# Lymphedema and Lymphedema Treatment



## liz (di-va)

I think there should be a thread about this! So I'm starting one. I know there are others besides me around here who might wish to talk about it or at least read about it.

By strange coincidence (I've been trying to explain what it is to people recently), there was an article about it in the _New York Times_ last week (pasted below). It mostly talks about lymphedema in the context of post-cancer treatment, but does a good general job of describing the way treatment works and its unusual demands.

[My story: I have lymphedema primarily in my lower left calf, the result in part--chicken? egg?--of a blood clot this past fall. I have had cellulitis. I'm currently in my c. 7th week of treatment and it seems to be going quite well overall. Although I am NOT to the nerdy compression stocking stage yet! That joy awaits. I will probably be there in 2-4 weeks.]

The thing that amazes me, that the article touches on, is how little the lymph system is understood. I had this condition for three years before anybody thought to diagnose me with it, and my calf was prodded a lot during the Clot Crisis. I am very very lucky that I live closeby to a good PT/lymphedema specialist and can get the treatment I need; there just aren't a lot of people doing it.

Anyhow, I would hope people might use this thread if necessary. I know I will be having more questions as I proceed with treatment!

Plus, I plan to post naughty photos of me in bandages . Stigmas suck!

- - - - - - - - - - - - - - - -

(This will probably be off the NYT site shortly)
Article

A Painful Lymph Illness Often Follows Cancer

By RONI CARYN RABIN
Published: June 5, 2007


Pat Malone had her lymph nodes removed as part of her breast cancer treatment, and for almost a decade she managed to keep her lymphedema, a chronic condition that causes swelling from an accumulation of fluid, under control. Then she decided to paint her kitchen.

Within days, the pain in her right shoulder was nearly unbearable, she said. She had chills and a fever of 105. Her arm was bright red and wicked looking.
Thank goodness I knew what signs to look for, said Ms. Malone, 53, who lives in Northport, N.Y., on Long Island. I went to the emergency room and I told them, Youve got to put me on intravenous antibiotics right away. I was in the hospital for seven days.

Many cancer survivors develop lymphedema, which can lead to serious infections like the one that landed Ms. Malone in the hospital over a year ago. Though it can occur without cancer, patients whose lymph nodes were removed during cancer treatment are particularly susceptible. Some studies suggest that 30 to 40 percent of breast cancer survivors develop lymphedema, sometimes years after surgery.

There is no cure for lymphedema. But while patients are still occasionally told that they must learn to live with it, experts say effective treatments are not only available but critically important, and the sooner patients get help, the better. An infection from a flare-up can be life-threatening, because the lymphatic system plays a major role in the immune system.

Every cell in your body is like a little manufacturing plant that makes debris, and the lymphatic system drains the trash and carries it away, said Dr. Alan Kimmel, medical director of the Lymphedema Center at the Greater Baltimore Medical Center.

The system ferries the debris to the lymph nodes, which Dr. Kimmel likened to Dumpsters. When you take that away, the fluid has no place to go, and it builds up. You can understand why infections occur.

The first step for a patient is getting the right diagnosis. That isnt always easy, because few physicians specialize in lymphedema and the swelling may be mistaken for other conditions, including heart, thyroid and kidney problems and deep vein thrombosis.

The lymphatic system is not taught in medical school, said Saskia Thiadens, executive director of the National Lymphedema Network, a nonprofit organization that is pressing to include more education about the system in physician training.

Even after diagnosis, it may be hard to get access to good treatment. The preferred therapy for lymphedema, called complete decongestive therapy, involves a time- and labor-intensive gentle massage technique to stimulate new pathways for the lymphatic fluid. Many insurance policies cover the therapy, which can cost thousands of dollars.

It is performed by certified lymphedema therapists, who have completed at least 135 hours of training. The National Lymphedema Networks Web site, www.lymphnet.org, has a directory of certified therapists that can be perused by state or region.

But some places are better served than others. Unless youre in a coastal urban area, its hard to find certified therapists, said Dr. Paula Stewart, the medical director of HealthSouths Lakeshore Rehabilitation Hospital in Birmingham, Ala. In small-town U.S.A., there is a big shortage.

And since a course of treatment lasts several weeks, patients may find themselves on waiting lists  or even have to relocate temporarily. In 1994, Jeanne B. Tassis of Prospect, Conn., finally got a diagnosis of lymphedema after almost eight years of symptoms. Mrs. Tassis, who has since founded the Circle of Hope Lymphedema Foundation, eventually moved into a hotel in Woodbury, N.Y., for a few weeks while undergoing treatment at the Lymphedema Therapy Center there.

Treatment involves three to four hours of therapy a day. Massage is just one part of it; afterward, the therapist wraps the affected limb in compression bandages, mummy-style. Ideally, the therapist will prescribe exercises and teach the patient to do self-care and manual drainage at home.

Because the treatment is so rigorous, some centers ask patients to sign an agreement in which they promise to adhere to it.

When treatment is completed, the patient is fitted for compression garments that are custom-made for the affected limb. The garments, which can cost $100 or more (seldom covered by insurance), must be worn during all waking hours and are replaced every four to six months as they become loose.

And keeping lymphedema under control is a lifelong struggle. To avoid injuries that lead to flare-ups, experts recommend using razors with care, wearing rubber gloves to wash dishes, applying insect repellent (bites can become infected) and even not having the cuticles cut during a manicure.

Exercise should be done in moderation, and patients should wear loose-fitting jewelry and clothing and avoid extremes of cold or heat. If the legs are affected, people should not cross them, and compression garments are recommended for all patients during airplane travel. The National Lymphedema Network sells bracelets that say Lymphedema Alert: No blood pressure and no needles into this arm.

Anyone with a history of the disorder should be on the alert for warning signs like a slight swelling or redness, a feeling that their rings or watches are getting tight or a heavy feeling in a limb.

Pat Malone changed her ways after her scare last year; she is more careful about putting pressure on her arm, and she wears compression garments religiously.

I dont baby the arm  but I had overdone it painting the kitchen, she said. Ive worn compression garments 24 hours a day ever since. You have to do it.

Its a small price to pay to keep your arm mobile.


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## DeniseW

I have it in my lower left calf also, my left leg always looks a little bigger than my right. I have a history of cellulitis although I haven't had it for a while since I lost some weight and started moving more. I think no matter how much I lose, my leg will always be the way it is now but I find it does get better when I drink a lot of water and when I wake up in the morning, it almost looks normal but during the day, it gets bigger. I've never wrapped it or anything or used stockings, I guess I just accepted that this is the way it is.


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## liz (di-va)

DeniseW said:


> I have it in my lower left calf also, my left leg always looks a little bigger than my right. I have a history of cellulitis although I haven't had it for a while since I lost some weight and started moving more. I think no matter how much I lose, my leg will always be the way it is now but I find it does get better when I drink a lot of water and when I wake up in the morning, it almost looks normal but during the day, it gets bigger. I've never wrapped it or anything or used stockings, I guess I just accepted that this is the way it is.



Well, yeah, there's no cure for lymphedema, so if you've got it, you've got it for life. And just to make sure the thread gets started on the right note, for many people there is no option of just accepting it, nor should there be, since they are in danger of life-threatening infection, or can't move around, or a lot of other problems. In my case, increased exercise didn't make it go away; I ended up with a second bout of cellulitis. The combination of exercise and treatment together have helped, though, due to the way the body performs when it's under compression like that. Which is great.


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## SummerG

Liz! This is a great idea for a thread. I actually have pictures of the bandaging process I went through every morning and again at night during the intensive part of my treatment. I still bandage when I feel like my legs are getting too big, because the compression garments and sleeves don't do quite as good of a job as the bandages. ok... here's some fun pics


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## liz (di-va)

- Tubi-Grip?? Do tell.

- Were these pix from the intensive part of treatment then? (or later?) - couldn't quite tell from what you said.

Thanks for posting photos!! How long were you in treatment again, overall, if you don't mind saying?



SummerG said:


> Liz! This is a great idea for a thread. I actually have pictures of the bandaging process I went through every morning and again at night during the intensive part of my treatment. I still bandage when I feel like my legs are getting too big, because the compression garments and sleeves don't do quite as good of a job as the bandages. ok... here's some fun pics


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## SummerG

liz (di-va) said:


> - Tubi-Grip?? Do tell.
> 
> - Were these pix from the intensive part of treatment then? (or later?) - couldn't quite tell from what you said.
> 
> Thanks for posting photos!! How long were you in treatment again, overall, if you don't mind saying?


 
The Tubi-grip is a super stretchy sleeve that goes on as the last layer. It sort of holds everything together, even though everything is all tight anyway. I think it's main purpose is to cover the short stretch bandages because if they rub against another part of the body (like the back of the thigh) they can cause some chafing. Another purpose is to cover the metal clips that hold the ends of the short stretch bandage to itself. Those little suckers can hurt if they snap back at ya. 

Those photos were taken during the intensive treatment. I was in bandages 22-23 hours a day. For about 3 months my schedule would be: 

1. Wake up, take bandages off 
2. Take bath 
3. Bandage 
4a. Physical therapist's office for MLD (Manual Lymph Drainage) (massage & bandage) 
OR 
4b. Go to work in the bandages feeling like a tool. 
5. In the evening the bandages would be falling down, so another re-bandage would be necessary. 

At the end of the 3 months we ordered a night time compression boot and daytime stockings to help me maintain the progress made. The boot was terrible... never fit right and made me anxious as all get out. I changed over to night time sleeves that were less compression, but much more comfortable and easy to travel with.


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## Flyin Lilac

I've been a klutz all my life, so falls where I landed on my knees or shins were nothing out of the ordinary. Plus there was the time I shut my leg in the car door, oh and that time I was going down some basement stairs and one of the steps split in two and one side jammed into my calf, and the time someone fired a soccer ball directly into my bare thigh. So yeah, you can see where this is going ...

If I knew then what I know now --- Years of these injuries triggered bouts of cellulitis in my left leg that at the time were investigated as thromboses or diganosed as tendinitis or "muscle strain." The next to last (and worst) round of cellulitis back in 1998 or '99 damn near landed me in the hospital (it traveled from left leg to right, then up into my abdomen and around one side of my waist), but I dodged that by promising to spend an entire week in bed and taking a rugged course of Cipro. Got past it, went on my merry way ... then I got an ulcer on my left calf that spent about a year being self-treated and then misdiagnosed once I finally showed it to a doctor. Off to the wound treatment center I went for two or three months of wraps and debriding (and had to ride out one more small bout of cellulitis), and then finally, FINALLY someone said "lymphedema." Gee, ya think?????

I don't recall exactly how many months I was treated at the lymph clinic at my local hospital, but I do remember being extremely depressed and feeling like life as I knew it was over. And it was, to a degree, but not as dramatically as I had feared. Yes I had the daily wrapping hell just like Summer describes in her post, and a few times they hooked me up to a compression pump for an hour at a time. It just left me needing to pee real bad, basically. And then somewhere along the way things just kind of slowed down. They said they had done all they could do, they got me measured for compression stockings for both legs (my left leg is the worst, but I have it in my right too), and they sent me on my way. I thought, Um ... Ok ... NOW what do I do? Just hope for the best?

The stockings NEVER fit exactly right and can often cause more harm than good when they roll or slip and start cutting into your leg, but they're far better than nothing. The wraps are even worse, for all the reasons Summer described and more (I can totally empathize with the "going to work feeling like a tool" aspect). But near the end of my visits to the lymph clinic they got me the compression boots --- they remind me of big gawmy snowboots with velcro straps strategically placed up the length of the boot. I wear them in bed at night and around the house during the day, and I have to say they've offered me the best relief from the swelling, as long as I'm careful about how tight I yank the straps (many nights I've gotten numbfoot or charley horses because I had them cinched too much). One added bonus is they're very warm and toasty on a cold winter's night. On the other hand, they're hellatious on a hot sticky humid summer's night lol.

Anyway, for me personally, I'm content with the combination of the boots at night and the stockings during the day. There are even some days where I can go with nothing at all just to give my legs a break and "air out" my skin a little. I admit I'm not as diligent as I should be, especially with bug bites or tanning or shaving, but I'm getting better. I've gone about 5 or 6 years now without incident (no cellulitis and pretty decent maintainence of my swelling), so I really can't complain.

But I'm going to, about the service/insurance aspect of living with lymphedema. It blows, to put it bluntly. My lymph clinic wasn't particularly aggressive in helping me with my gear, and my insurance company through work seems to operate on whim when it comes to coverage for the boots and stockings. I haven't had to pay out of pocket yet, thank god, but they've sure made it difficult to procure replacement materials, as the stockings wear out in a matter of months and the boots are rated to last no more than a year. I'm overdue for both, and I'm dreading the inevitable phone tag among primary care, lymph clinic and insurance. Especially since a few days ago my primary informed me that my lymph clinic doesn't even have its therapist anymore, so I have to see a whole new one at the other hospital in my city. Ugh. I can already guess they won't even have my records from the 1st clinic, how much ya wanna bet?

Do I sometimes feel limited and get depressed about dealing with lymphedema? Absolutely. I don't wear shorts in public because I can't handle any more stares and questions about why my legs are so misshapen and discolored. Some days my legs are so tired and heavy feeling that I want to cry. But in retrospect, the worst is behind me (fingers crossed) and I've learned to adapt quite well and remain keenly aware of the slightest change or odd feeling in either leg so that I won't go through the worst again.

No real point to my post except to just tell my story. Sorry it has been so lengthy. I only hope anyone who sees themselves in my experiences will not make the same mistakes I did by not aggressively pursuing the CORRECT diagnosis. Most people with lymphedema suffer far longer than necessary because doctors just don't know to look for it. Let's hope that improves.


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## Tina

liz (di-va) said:


> Well, yeah, there's no cure for lymphedema, so if you've got it, you've got it for life.


Au contraire! If one has stage one or two, it can be cured, particularly if it's stage one. Stage three is considered incurable, though it is possible that the lymph glands can begin working again, it's just unlikely.


> And just to make sure the thread gets started on the right note, for many people there is no option of just accepting it, nor should there be, since they are in danger of life-threatening infection, or can't move around, or a lot of other problems.


I've seen this sort of attitude before, and I cannot relate to it. To have it and remain untreated (even when the person is aware that treatment is out there) is just unfathomable to me, but it happens.

This is probably the most important website on the net, IMO, as it is where treatment can be found. Since many doctors still do not understand lymphedema, and even fewer understand what proper treatment should be, this place is like gold when it comes to finding help.


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## liz (di-va)

Tina said:


> Au contraire! If one has stage one or two, it can be cured, particularly if it's stage one. Stage three is considered incurable, though it is possible that the lymph glands can begin working again, it's just unlikely.



I think this might be an issue of semantics...? Over and over in every resource (medical dictionaries, LE treatment guides) is the phrase: "lymphedema is not curable" (including the article above). What resources all also say, though (in addition to lymphedema being "not curable, but manageable/controllable/treatable"), is that it's sometimes "reversible," which is part of the description of stage one. I think "reversed" is technically different from "cured," although that seems like hairsplittin from my patient POV. 

I did find one resource that said, "Lymphedema is treatable, but rarely curable"--perhaps that's most accurate? Not sure.

I'd guess a few other contributing factors to all this might be 1) the fact that even people who work in LE don't entirely understand causes at times and can talk only in terms of risk reduction, not cures 2) the fact that LE is often associated with venous breakdown, which is irreversible, as are (obviously) the loss of lymph nodes and 3) trying to scare patients into compliance! since most of the time it is a chronic condition, and to be managed.

Anyhow, the point is, it's worth doing something about it! As you say.


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## liz (di-va)

Flyin Lilac said:


> Sorry it has been so lengthy. I only hope anyone who sees themselves in my experiences will not make the same mistakes I did by not aggressively pursuing the CORRECT diagnosis. Most people with lymphedema suffer far longer than necessary because doctors just don't know to look for it. Let's hope that improves.



It was great to read your story--I'm not happy it happened to you, but I found it really helpful to read. Like you, I went through an enormous amount of crap before I even got a diagnosis. I hope it changes too!


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## liz (di-va)

I am in the middle of intensive treatment right now...that all sounds pretty familiar, Summer! Although Tubi-Grip...sweet. My PT doesn't use any metal clips (just tape), maybe that's why she hasn't used it, but it sounds rockin!



SummerG said:


> At the end of the 3 months we ordered a night time compression boot and daytime stockings to help me maintain the progress made. The boot was terrible... never fit right and made me anxious as all get out. I changed over to night time sleeves that were less compression, but much more comfortable and easy to travel with.



Interesting...sounds like you and Lilac had different reactions to the boot...?


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## Zandoz

No Lymphedema here, but I do have it's cousin Venous stasis...similar leg swelling due to fluid accumulation, with skin ulcers that tend to developed cellulites, and at least in part, similar treatments...the multi layer compression wraps, and for maintenance, the "nerdy compression stocking" (in my case, stockings).

I just wanted to make a couple comments about the stockings. First off, I've found that there is a BIG difference in brands and design of stockings. The first ones I had were horrid torture devices, even with about 1/3 the compression I now have, that I could not wear for more than 8 hours due to the sheer torture. The ones I have now are great. They are made by the Swiss company Ganzoni Sigvaris. They are not what I would call socks...they are more of a contoured open-at-both-ends tube, that goes from the arch of the foot to knee level. I can routinely wear them 16-18 hours with no serious discomfort, and I have on a couple occasions wore them 36+ hours before the "I gotta get these things off now" feeling sets in. My biggest complaint about them is that they are a bit toasty in hot weather, but not excessively so. 

This is my first summer with them (but I should have had them 3 years ago, but my doc opted for the monthly WLS lecture as the treatment of choice, even though the problem in my case is hereditary). I was not looking forward to "shorts weather", because in the past, I basically lived the summer months in them. As I told my wife, "I look goofy enough naturally, I'm not going to make matters worse". Our first warm stretch, I suffered for vanity, wearing jeans or sweats every day. Then one day something snapped. I was getting dressed and yelled "Screw it!"...and put on my shorts.....Ahhhhhhh...I've been wearing them ever since. Yeah, I get looks, but ya know what? My comfort is worth more than their looks will ever amount to....Screw em!


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## liz (di-va)

Zandoz said:


> Then one day something snapped. I was getting dressed and yelled "Screw it!"...and put on my shorts.....Ahhhhhhh...I've been wearing them ever since. Yeah, I get looks, but ya know what? My comfort is worth more than their looks will ever amount to....Screw em!



good for you!!


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## Miss Vickie

Gosh, you guys, I just can't imagine going through all that, especially in summer. You have my empathy and admiration to keep at it. 

We reaaaally need to get some better treatments for lymphedema. You just shouldn't have to go through all this.


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## Sandie S-R

Flyin Lilac said:


> .....snip.....
> 
> But I'm going to, about the service/insurance aspect of living with lymphedema. It blows, to put it bluntly. My lymph clinic wasn't particularly aggressive in helping me with my gear, and my insurance company through work seems to operate on whim when it comes to coverage for the boots and stockings. I haven't had to pay out of pocket yet, thank god, but they've sure made it difficult to procure replacement materials, as the stockings wear out in a matter of months and the boots are rated to last no more than a year. I'm overdue for both, and I'm dreading the inevitable phone tag among primary care, lymph clinic and insurance. Especially since a few days ago my primary informed me that my lymph clinic doesn't even have its therapist anymore, so I have to see a whole new one at the other hospital in my city. Ugh. I can already guess they won't even have my records from the 1st clinic, how much ya wanna bet?
> 
> Do I sometimes feel limited and get depressed about dealing with lymphedema? Absolutely. I don't wear shorts in public because I can't handle any more stares and questions about why my legs are so misshapen and discolored. Some days my legs are so tired and heavy feeling that I want to cry. But in retrospect, the worst is behind me (fingers crossed) and I've learned to adapt quite well and remain keenly aware of the slightest change or odd feeling in either leg so that I won't go through the worst again.
> 
> No real point to my post except to just tell my story. Sorry it has been so lengthy. I only hope anyone who sees themselves in my experiences will not make the same mistakes I did by not aggressively pursuing the CORRECT diagnosis. Most people with lymphedema suffer far longer than necessary because doctors just don't know to look for it. Let's hope that improves.




Please, please consider telling your story here.....

http://www.dimensionsmagazine.com/forums/showthread.php?t=24323

It is so important that we fight for better health care, and now that it is at the attention of the media and public (because of the Michael Moore movie) it is even more important.

PM me if you need any help with this.


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## liz (di-va)

Miss Vickie said:


> Gosh, you guys, I just can't imagine going through all that, especially in summer. You have my empathy and admiration to keep at it.
> We reaaaally need to get some better treatments for lymphedema. You just shouldn't have to go through all this.



Yah know...I dunno what that'd be! Treatment *is* pretty medeival, and slow, and labor-intensive, but it has the great virtues of doing no harm, providing excellent side-effects (from the massage, the touch, the daily care) and having pretty good-- even great--results. I don't have a clue, though, about what else is actually possible to do.

I'm getting ready for Stockings and although I feel chipper, I also feel miserable at the thought of summer in stockings. Stockings, which I never wear, even in *winter*... Blech. How am I gonna do this? I refuse to wear those tan, "skin tone" ones. Miserable.

From the "a little learning is a dangerous thing" files: When my lymph bandages came off yesterday we discovered a small infected spot from an ingrown hair. Which to me looked just awful. All 3 PTs stood around peering down at my leg while I freaked and said, "it looks NECROTIC!" only to have them all kinda look at me like...hushup, girl. Which was kinda hilarious and embarrassing (where did "necrotic" come from? I just blurted it out) and I shut up. Oh did it look gnarly, though! I was just a lil freaked to see an infected spot be revealed... Scary!

*the hockey goalie*


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## SummerG

liz (di-va) said:


> Yah know...I dunno what that'd be! Treatment *is* pretty medeival, and slow, and labor-intensive, but it has the great virtues of doing no harm, providing excellent side-effects (from the massage, the touch, the daily care) and having pretty good-- even great--results. I don't have a clue, though, about what else is actually possible to do.
> 
> I'm getting ready for Stockings and although I feel chipper, I also feel miserable at the thought of summer in stockings. Stockings, which I never wear, even in *winter*... Blech. How am I gonna do this? I refuse to wear those tan, "skin tone" ones. Miserable.
> 
> From the "a little learning is a dangerous thing" files: When my lymph bandages came off yesterday we discovered a small infected spot from an ingrown hair. Which to me looked just awful. All 3 PTs stood around peering down at my leg while I freaked and said, "it looks NECROTIC!" only to have them all kinda look at me like...hushup, girl. Which was kinda hilarious and embarrassing (where did "necrotic" come from? I just blurted it out) and I shut up. Oh did it look gnarly, though! I was just a lil freaked to see an infected spot be revealed... Scary!
> 
> *the hockey goalie*



re:stockings... yeah.. it's a tough thing to get used to... i remember the first few times putting them on, i nearly threw out my back... even with the rubber gloves it was a struggle because of the excess skin i have around my ankles. my legs are still very large, and when i saw the stockings i was like... you wanna squeeze these into that?! i went with bright purple stocking for my first pair... i think the girls at the PT office got a kick out of it, because they are so used to people picking out the flesh tone. this last time though i went with navy and... flesh tone! lol.. because i have some idea in my head that i might show some leg or something and it might look close to normal, lol. 

about the infected spot... i think with the lymphedema it causes all sorts of whackiness with hair growth... where my legs were affected the worse... i don't even grow hair anymore. and on the parts of my legs that get the squishiest i find ingrown hairs frequently. I'm terrible though, because i dig those suckers out and slap some neosporin on. i know.. not really the best idea.. but i'm compulsive with things like that. :doh:


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## Cinda

I had a swollen left leg for YEARS. It was twice the size of my right leg.  Whenever I went to the doctor I would ask can't we do anything to help this? I was always ignored and then the doctor would start with the wls spiel. My leg was swollen when I had insurance and then later when I lost my job and had no insurance my doctor did only the bare minimum of care for me due to my having to pay for everything myself. 

When I fell and broke my ankle I even refused to let the EMS guys take me to the ER, since I couldn't afford it, (I figured my ankle was only sprained). Funny thing is my ankle healed just fine; but as soon as I tried to start my regular routine grocery shopping, cellulitis attacked and they had to operate 3times to drain out the infection. To make a shorter story, after 2 1/2 months of shuffling from hospital to nursing home to hospital I was sent to a wound care center where my surgeon worked which was part of the hospital .

Luckily right next door was a Lymphedema clinic. My surgeon talked the hospital into not charging me for the wound care or lymphedema care. whoo hoo. Thank God, 'cuz I could never have afforded it. They squeezed about 3liters of excess fluid from my left leg. They had a free coupon for a thing called a farow(sp) wrap which was essentially heavy duty stocking material like with 5 velcro straps. It went from my foot to my knee. They thought I could use it easier than a stocking but actually I found a stocking easier.

Unfortunately, shortly after I returned home, the darn farow wrap opened my barely healed scar and I had to stop using the wrap and the stockings to get it healed. Naturally my leg puffed right back up with fluid  . If only I had had a friend or S.O. to be trained on wrapping my leg and massage I could be managing my lymphedema but I just can't afford more lymphedema care. They had a waiting list a mile long too they were so good.


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## Tina

Cinda, I'm sorry you have had such difficulty being treated. It's so frustrating to have legs that just seem to balloon up and become painful and not be able to treat them.


liz (di-va) said:


> I'm getting ready for Stockings and although I feel chipper, I also feel miserable at the thought of summer in stockings. Stockings, which I never wear, even in *winter*... Blech. How am I gonna do this? I refuse to wear those tan, "skin tone" ones. Miserable.


Liz, I'm on my third pair of compression stockings. My first two pair were black, and my third is dark brown. They are all full-toe thigh highs, which I love. I absolutely refuse to get the full to-the-waist ones.

It's funny, but my legs feel SO much better when they're on. Without them for too long and I have those nerve type of pains. It's no picnic in summer, and so often wish I could wear a summer dress with just bare legs, but if I have to choose between being able to do that and not having treatment for my legs, I'll choose treatment every time; it has helped to reduce my legs so very much -- as has the pump.

Do any of you ever have problems with your legs keeping you up at night? Way too often I cannot sleep because I get this weird sort of painful numbness (that's the best way I can describe it), and then my legs also at times feel like the muscles need to be stretched out, so I have to keep stretching my legs. It drives me nuts. I also have fibro, so I'm not sure if that has anything to do with it or not.


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## liz (di-va)

Cinda said:


> I had a swollen left leg for YEARS. It was twice the size of my right leg.  Whenever I went to the doctor I would ask can't we do anything to help this? I was always ignored and then the doctor would start with the wls spiel. My leg was swollen when I had insurance and then later when I lost my job and had no insurance my doctor did only the bare minimum of care for me due to my having to pay for everything myself. ....
> Unfortunately, shortly after I returned home, the darn farow wrap opened my barely healed scar and I had to stop using the wrap and the stockings to get it healed. Naturally my leg puffed right back up with fluid  . If only I had had a friend or S.O. to be trained on wrapping my leg and massage I could be managing my lymphedema but I just can't afford more lymphedema care. They had a waiting list a mile long too they were so good.



Oh Cinda, that is such a hard story...I am really sorry you had such a sucky time getting diagnosed--at the expense of a life-threatening infection, no less (THAT is the part that makes me wonder what the (*&)(*^)#*(@) doctors are thinkin--If they understand cellulitis, why not....that?) I hope you can get the care you need, somehow. At least you know what works now.


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## liz (di-va)

Tina said:


> Liz, I'm on my third pair of compression stockings. My first two pair were black, and my third is dark brown. They are all full-toe thigh highs, which I love. I absolutely refuse to get the full to-the-waist ones.
> It's funny, but my legs feel SO much better when they're on. Without them for too long and I have those nerve type of pains. It's no picnic in summer, and so often wish I could wear a summer dress with just bare legs, but if I have to choose between being able to do that and not having treatment for my legs, I'll choose treatment every time; it has helped to reduce my legs so very much -- as has the pump.
> Do any of you ever have problems with your legs keeping you up at night? Way too often I cannot sleep because I get this weird sort of painful numbness (that's the best way I can describe it), and then my legs also at times feel like the muscles need to be stretched out, so I have to keep stretching my legs. It drives me nuts. I also have fibro, so I'm not sure if that has anything to do with it or not.



I'm so glad to hear your take on things, T--to hear that they/how they work for you. If stockings can do that then....heck, yeah, I'll put up with them. (One thing I've discovered in all this--maybe you have too--is that doctors and nurses actually wear them themselves sometimes! Who don't have lymphedema, I mean. Just because they're on their feet all the time. Which tells you something about what they must be able to do for people.)

* You find that the thigh-highs stay up? I was recommended to not get them, since they "roll down all the time." But I'd MUCH rather wear them than pantyhose. Maybe I could pair them with bicycle shorts to stay up?

* I do have that kind of stretchy/nerve/jumpy pain in my legs sometimes, of varying kinds. If these help...then awlright.

(I'm so glad we've been able to have some discussion of all this here. It makes me sad and furious that an initial lack of diagnosis seems to be an inevitable part of the process for almost everybody, but just hearing other people's stories has been a really helpful tool for understanding the possibilities for how all this works.)


----------



## Tina

I'm with you, Liz, about the lack of general knowledge in the med. community about lymphedema. It's pathetic that it's now more well-known than when I diagnosed myself (!!) after seeing pictures and reading accounts of others who had it, and STILL most doctors have no idea what it is. Many of them who do, think of it only in connection to women who have had vasectomies. 

My doc at the time, who was a sweetie, had no idea. He was prescribing me water pills, and was looking up various skin conditions, and though he tried and I don't hold it against him, he had no clue.

The next doc was even worse, though when I told him that that is what I believed I had, he sent me to a dermatologist whose only suggestion was to get into a pool every day. I told him I had cellulitis, for which he prescribed a round of antibiotics, and then I had to tell him it wouldn't be enough. This all started in 1998 and I went without treatment until 2004 -- all that time swelling out of control, and moving from stage 1 to stage 2 to stage 3, feeling helpless and in constant pain. Pathetic, infuriating -- just so many feelings of frustration around this subject for me.

The process of being bandaged after the lymph drainage massage, when really needed, and having the pump and sleeves at home, and then wearing the stockings every day keeps me mostly reduced. I don't pump my legs nearly as often as I should, though.  


liz (di-va) said:


> * You find that the thigh-highs stay up? I was recommended to not get them, since they "roll down all the time." But I'd MUCH rather wear them than pantyhose. Maybe I could pair them with bicycle shorts to stay up?


Yes, they stay up just fine, especially if I use this special adhesive which holds them up and rinses off with water. I've been doing it this way for 3 years, through 3 pair, and wouldn't do it any other way. They do not roll down if they are fitted properly and held up with the roll-on adhesive. Being measured accurately is a real bitch. Your numbers will change depending upon whether you're standing up or laying down, but since time spent with the stockings on is time sitting or standing, have them measure you while you're standing.


> * I do have that kind of stretchy/nerve/jumpy pain in my legs sometimes, of varying kinds. If these help...then awlright.


I can't say that the stockings help much with the nighttime stuff. I mean, they help in that legs that are left to swell are more uncomfortable/painful overal, day or night, but you don't really wear them at night, so it's not a factor.


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## SummerG

Tina said:


> Many of them who do, think of it only in connection to women who have had vasectomies.


 

hehehe, this gave me a giggle... i know what you meant though  

my lymphedema therapist told me she was shocked that my obgyn didn't realize i had lymphedema, because they tend to be familiar with it because of their patients who have had breast cancer. 

during my 2nd bout of cellulitis on my calves i had this dialogue with my PCP: 

me: have you ever heard of lymphedema? 
dr: yes. 
me: i think i have it. 
dr: you do. 
me: well, don't you think you should have informed me? 
dr: well, there is no treatment for it, and it will spread to the rest of you body if you don't lose weight. 
me: that is ridiculous, and there is treatment. (handed him print outs from my research) 
dr: ok, i'll write you a prescription for physical therapy. 

talk about a WTF moment! 

oh yeah.. there are several schools of thoughts on night time compression, pumps,and stockings. my particular therapist has me in stockings during the day and wanted me to use the reid sleeve at night, but it really was too bulky and never fit properly, so i went with the contour which is easier and less expensive. I'm not supposed to wear the stockings overnight.. as i'm supposed to use the less binding night garments. However, I had read that some people wear stockings at night without problem, so I've been doing that, and then bandaging every couple weeks and i use the contours for when i travel and don't have someone with me to wrap me up like a mummy. i've also heard that some therapists recommend nothing at night. so, i think it's all a matter working out what you can deal with.


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## Tina

OMG, I really wrote that, didn't I? Good Lord, put me out of my misery! Obviously, I meant mastectomies.   

Summer, I have a pair of stockings that are fairly worn out. They have some compression left in them, but sometimes when I get my legs bandaged I wear them underneath, when they only bandage to my knees. They say never to wear the ones that have high compression to bed. Dunno why.


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## liz (di-va)

RANT (hang on): I've really been thinkin about all this (lymph) recently...the lack of appropriate diagnoses; the lack of medical info; the great harm done patients by people who don't understand any better. It really makes me heartbroken and mad. ESPECIALLY when it seems like there's the most moronic kind of fatphobia woven into the process. I mean, there was clearly something wrong with my leg--even if you'd never seen a fat person before in your life, a limb which is twice the size of the other might set off a few bells--but I have this horrible feeling that it was all just..."fat" in their eyes. Generalized bigness, even though it hardly seems possible. That is just shameful.

I know that doctors barely understand lymphedema when it comes in forms they're expecting, such as post-cancer, so what do you expect, but I am just in the process of being mad. I feel like it was a combination of sheer dumb luck and sheer dumb tenacity that got me the right care, and that is all. No, I know that's it. And I was LUCKY! 

When I read other people's stories (Tina, Cina, Lilac, Summer, everybody), I get even more exponentially furious. Impressed with our tenacity, and freaking furious. Hrmph. </rantyrant>

I did some forum searching and didn't find much; has there ever been much discussion here that y'all know of about the very complicating/related situation of lipodema and lymphedema? I apparently have that too, although it's not like the treatment's any different; you just do the same thing. It has certainly made me think a little differently about fat distribution and its meanings! I am not one of those people who's always had it; it's a function maybe of hormonal strangeness. Diagnosing this is another reason why I love my PTs and not my doctor; they took one look at my legs and asked if anybody had ever said I had it. It wasn't all just generalized fat to them... Anyhow, if you have 'big leg' or 'heavy leg' syndrome and a body size that's becoming/always has been different on the bottom than the top (accompanied by any other symptoms) tis worth lookin at, look there's my kinda lame-O PSA.

Thanks so much for the hints about measuring & thigh-highs, Tina, plus telling your story more. 

Yah, I've been told not to wear my stockings at night. I'm fine with that! My skin is excited about the fresh air .

I'm still new to all of this (obviously) so scuse if I'm all...talky in newbie ways . Just drinkin it all in. Still can't believe y'all had to self-diagnose like that! (T & S)


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## Tina

You definitely have a right to your rant, Liz. Everything you say has pretty much been true for me, too. 


liz (di-va) said:


> I did some forum searching and didn't find much; has there ever been much discussion here that y'all know of about the very complicating/related situation of lipodema and lymphedema?


Nope. I really should look into it more, but I don't think anything can be done about it. I have it, too, and honestly, it's worse than the lymphedema, because while treatment can make the lymphatic fluid move, the lipodema doesn't do much of anything. It also hurts like a bitch, and is the reason why my PT has to be very careful not to bandage me even a little too tightly. If it's definitely too tight from the start, she has to hurry up and unwrap the offending area until it's not too tight. If it's not way too tight, but somewhat too tight, which is the kind of too tight that builds, then I'll have to unwrap myself within hours.


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## LillyBBBW

Tina said:


> OMG, I really wrote that, didn't I? Good Lord, put me out of my misery! Obviously, I meant mastectomies.
> 
> Summer, I have a pair of stockings that are fairly worn out. They have some compression left in them, but sometimes when I get my legs bandaged I wear them underneath, when they only bandage to my knees. *They say never to wear the ones that have high compression to bed. Dunno why.*



I believe it is because they have the potential to cut off circulation and cause blood clots. I'm pretty sure that's what I was told. I've had mild lymphedema for about 13 years now. I havent' done anything about it except to wear socks and/or boots which keep the swelling down in my feet and ankles and to take excellent care of my skin. I tried the compression stockings but they seemed to do very little to keep inflamation down when just a plain ole pair of men's black ankle socks seem to do the job better. At least in my ankles anyway. I find that for a week each month I have no swelling at all, usually right after my period. I'm with Liz in that I feel doctors could know and do so much more if they cared enough to look into it but to do so needs funding. Frankly they don't think edema is as important as penile disfunction.


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## Zandoz

The first time I was wrapped for my venous stasis, they got it too tight...it was the most excruciating 36 hours of my life...I was literally bed-bound writhing in agony the whole time. Finally I got up at 2:00am and had my wife cut the wrapping off. The next day when I called the wound clinic to tell them, I got a lecture for taking it off.


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## Tina

LillyBBBW said:


> I'm with Liz in that I feel doctors could know and do so much more if they cared enough to look into it but to do so needs funding. Frankly they don't think edema is as important as penile disfunction.


Amen and it sucks. I'm sure it doesn't have anything to do with the fact that most (not all, but most) of the people who get lymphedema are women --and fat women at that.


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## Sandie S-R

liz (di-va) said:


> I'm so glad to hear your take on things, T--to hear that they/how they work for you. If stockings can do that then....heck, yeah, I'll put up with them. (One thing I've discovered in all this--maybe you have too--is that doctors and nurses actually wear them themselves sometimes! Who don't have lymphedema, I mean. Just because they're on their feet all the time. Which tells you something about what they must be able to do for people.)
> 
> * You find that the thigh-highs stay up? I was recommended to not get them, since they "roll down all the time." But I'd MUCH rather wear them than pantyhose. Maybe I could pair them with bicycle shorts to stay up?
> 
> * I do have that kind of stretchy/nerve/jumpy pain in my legs sometimes, of varying kinds. If these help...then awlright.
> 
> (I'm so glad we've been able to have some discussion of all this here. It makes me sad and furious that an initial lack of diagnosis seems to be an inevitable part of the process for almost everybody, but just hearing other people's stories has been a really helpful tool for understanding the possibilities for how all this works.)



Liz,

I don't have lymphedema, but am proned to some swelling, so I wear support stockings a lot too. I buy my own. I use the Mediven Plus brand because they have an extra wide calf. I wear their size VII Petite, open toe, beige, and they are knee highs. They really do help me avoid swelling. I wear them when ever we go out, and/or when I know I have to sit in my wheelchair for a long time. If I do not wear them, I puff up badly. The swelling does go away over night, but avoiding swelling in the first place is important.


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## Sandie S-R

Tina said:


> I'm with you, Liz, about the lack of general knowledge in the med. community about lymphedema. It's pathetic that it's now more well-known than when I diagnosed myself (!!) after seeing pictures and reading accounts of others who had it, and STILL most doctors have no idea what it is. Many of them who do, think of it only in connection to women who have had vasectomies.
> 
> My doc at the time, who was a sweetie, had no idea. He was prescribing me water pills, and was looking up various skin conditions, and though he tried and I don't hold it against him, he had no clue.
> 
> The next doc was even worse, though when I told him that that is what I believed I had, he sent me to a dermatologist whose only suggestion was to get into a pool every day. I told him I had cellulitis, for which he prescribed a round of antibiotics, and then I had to tell him it wouldn't be enough. This all started in 1998 and I went without treatment until 2004 -- all that time swelling out of control, and moving from stage 1 to stage 2 to stage 3, feeling helpless and in constant pain. Pathetic, infuriating -- just so many feelings of frustration around this subject for me.
> 
> The process of being bandaged after the lymph drainage massage, when really needed, and having the pump and sleeves at home, and then wearing the stockings every day keeps me mostly reduced. I don't pump my legs nearly as often as I should, though.
> 
> Yes, they stay up just fine, especially if I use this special adhesive which holds them up and rinses off with water. I've been doing it this way for 3 years, through 3 pair, and wouldn't do it any other way. They do not roll down if they are fitted properly and held up with the roll-on adhesive. Being measured accurately is a real bitch. Your numbers will change depending upon whether you're standing up or laying down, but since time spent with the stockings on is time sitting or standing, have them measure you while you're standing.
> 
> I can't say that the stockings help much with the nighttime stuff. I mean, they help in that legs that are left to swell are more uncomfortable/painful overal, day or night, but you don't really wear them at night, so it's not a factor.



The stocking glue is called "It Stays". And believe me it does. I use it with my stockings and they do not roll, do not go anywhere. You can google the stuff, but most places that sell stocking also sell the body glue.


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## Sandie_Zitkus

I use compression stockings. My doc told me to wear them all the time. I do tend to take them off at least once a day to give my legs a break. They have helped me tremendously.


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## MLadyJ

Maybe we need to form a club..lol..I didn't realize that so many of us have the same problems. My lymphedema was diagnosed by an ultra-sound tech..imagine that..My Dr. sent me in to have a test because I had cellulitis and she wanted to be sure there was no blood clot. Well I went into treatment and have been wearing Jobst, elevarex, compression garments (knee high) for about 4 years. Recently I developed spots of lymphedema on my thighs. This has been a real b**ch because my thighs rub together and can be painful at times. So once again I am undergoing MLD and will be fitted for new compression garments (looks it will be ..ready for this..waist high bike capris with knee high underneath..yuk!!) Thank gawd that being through menopause I am now cold most of the time..they shouldn't be too bad...yeah right!!

Thanks to all who have shared their stories. It may not be "curable" but at least you can share your thoughts/feelings with others.


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## liz (di-va)

Sandie S-R said:


> The stocking glue is called "It Stays". And believe me it does. I use it with my stockings and they do not roll, do not go anywhere. You can google the stuff, but most places that sell stocking also sell the body glue.



Thanks for the tip--also about buying your own (sounds like off-the-rack, even, not custom made?).

I was measured for stockings yesterday. And was really unimpressed with the service I got--I asked the dude crucial questions about whether they recommended the thigh-highs or panty hose and he had no idea. He had no idea about anything, really, and didn't want to say he didn't know, so he was defensive and cranky. He didn't even know, for instance that they made any colors other than "flesh-tone." Ah. I actually got a huge whiff of fatphobia from the dude--I wasn't lookin for it, but he didn't seem capable of reconciling being a sensate and informed patient and being fat.

It was mostly frustrating because these stockings are so important, such a huge next step. I've given the last three months of my life to managing this condition, getting better, and committing to stockings forever is a huge issue. It was like he couldn't care less but didn't understand it anyhow. Anyhow, all in all a discouraging appt., but if it gets me stockings that fit I will be glad. Who KNOWS, though. Hrmph.


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## ssbbwQT

Thank goodness for your post! Although I have been a frequent Dims reader, I was always too embarrassed to talk about my lymphedema. I was born with it and only at the age of 34 was diagnosed with it. I went through the therapy...ahh those compression wraps...toes to groin for 3 months, 23 hours a day! I am now in compression stockings and my husband wraps me a few times a week. It's a very depressing and frusterating condition. Doctors think that by telling you to lose weight, you will be miraculously healed and most insurance companies don't cover a penny towards treatment or stockings... $400 4x a year out of pocket for something that is a dire need for your health is an awful lot of money! Not to mention, my 1st month of therapy cost over $6,000.00! Thank goodness my insurance at that time covered it! And the looks and stares, the friends and sometimes family that are lost because of ignorance...I could go on and on! Anyway, thanks for your post...it's good to know there are "others like me" out there! 

View attachment of=50,295,4431.jpg


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## SummerG

liz (di-va) said:


> Thanks for the tip--also about buying your own (sounds like off-the-rack, even, not custom made?).
> 
> I was measured for stockings yesterday. And was really unimpressed with the service I got--I asked the dude crucial questions about whether they recommended the thigh-highs or panty hose and he had no idea. He had no idea about anything, really, and didn't want to say he didn't know, so he was defensive and cranky. He didn't even know, for instance that they made any colors other than "flesh-tone." Ah. I actually got a huge whiff of fatphobia from the dude--I wasn't lookin for it, but he didn't seem capable of reconciling being a sensate and informed patient and being fat.
> 
> It was mostly frustrating because these stockings are so important, such a huge next step. I've given the last three months of my life to managing this condition, getting better, and committing to stockings forever is a huge issue. It was like he couldn't care less but didn't understand it anyhow. Anyhow, all in all a discouraging appt., but if it gets me stockings that fit I will be glad. Who KNOWS, though. Hrmph.



oh, this reminds me of my experience with my cpap machine, and the "technician" they sent from the durable medical supply company. he very much did not enjoy my questions or gentle contradictions. 

as far as the stockings go, my PT office also double dips as a durable medical supply company, so my PT does all my measuring which makes things much easier, and more comfortable. i wonder if this is common, or if the place i go to saw the need and jumped on it to further line their pockets. I say this, because I use a special lotion called lymphoderm, and they charge close to $25 for a rather small bottle (maybe 12 oz) and i called the company that makes it.. and in bulk (12 bottles or more) they are $7 each. a huge markup! 

does anyone here have special lotions or soaps they use on their affected limbs?


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## liz (di-va)

SummerG said:


> as far as the stockings go, my PT office also double dips as a durable medical supply company, so my PT does all my measuring which makes things much easier, and more comfortable. i wonder if this is common, or if the place i go to saw the need and jumped on it to further line their pockets. I say this, because I use a special lotion called lymphoderm, and they charge close to $25 for a rather small bottle (maybe 12 oz) and i called the company that makes it.. and in bulk (12 bottles or more) they are $7 each. a huge markup!
> does anyone here have special lotions or soaps they use on their affected limbs?



Boy, I *wish* my PT did the measuring. She's so much more familiar with my body than this schmo...

I use homeopathiac psoriasis cream (very spendy, from Whole Foods, active ingredient is Oregon Grape Root) on the patches on the front of my calves where I had statis dermatitis, but other than that...my PT uses just Cetaphil or Eucerin, nothing fancy.

What's in Lymphoderm? What's the specialness? And...what do you wanna bet it's something you could get via different, less spendy routes?


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## liz (di-va)

Hello to people telling their stories (ssbbwQT & MLadyJ) and posting on this thread! The more info, the better. I'm reading everyone's tales avidly! With much commiseration.

Yes, and thank God for insurance! So far I haven't paid one penny for PT.


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## SummerG

liz (di-va) said:


> Boy, I *wish* my PT did the measuring. She's so much more familiar with my body than this schmo...
> 
> I use homeopathiac psoriasis cream (very spendy, from Whole Foods, active ingredient is Oregon Grape Root) on the patches on the front of my calves where I had statis dermatitis, but other than that...my PT uses just Cetaphil or Eucerin, nothing fancy.
> 
> What's in Lymphoderm? What's the specialness? And...what do you wanna bet it's something you could get via different, less spendy routes?



i'm so taking the easy road on this one (plus i don't have the bottle here at work) http://lymphoderm.com/healing.html

it looks like they may have opened up direct purchasing, which would definitely save me a few bucks.


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## liz (di-va)

SummerG said:


> i'm so taking the easy road on this one (plus i don't have the bottle here at work) http://lymphoderm.com/healing.html
> 
> it looks like they may have opened up direct purchasing, which would definitely save me a few bucks.



That stuff looks pretty great, actually! Maybe it's just marketing, but I'd probably want to try it. Do you feel like it works better than regular lotion?


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## SummerG

liz (di-va) said:


> That stuff looks pretty great, actually! Maybe it's just marketing, but I'd probably want to try it. Do you feel like it works better than regular lotion?


 
well, i adore the smell of it(citrusy, but not orangey)... and it makes me feel a little more confidant that it has antiseptic qualities to protect me from germies. it feels, though, to me like most other lotions. maybe i can find a small container to bring a sample with me to naafa for you to try


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## ssbbwQT

My PT told me to go to the drug store and buy a moisturizing cream for extra dry skin with NO fragrance. She recommended Eucerin, which you can buy the store brand of. As long as you get something that is FRAGRANCE-FREE, you should be ok. As for soap, something fragrance-free with lots of moisturizers...Olay is a good one. Also, I use the fragrance-free baby wipes to clean in the folds of my skin unstead of using soap. My skin breaks down when I use soap in the folds of the skin. Hope this helps!


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## liz (di-va)

Here are my bandages right now, btw, toward the end of my treatment process. You can see where they've bunched around me knees, as per usual! You can't tell from this crappy iSight photo (it looks the opposite), but the left leg will always be bigger than the right, sigh, due to the vein that got damaged with the blood clot. I didn't feel like showing off my saddle bags, quite, but you can see them at the tops of my legs...that's the lipodema. Anyhow, progress! I wish we could get more squozed out, but we did pretty good. I went down at least a liter in both legs, I think maybe more in the really congested one.


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## liz (di-va)

SummerG said:


> well, i adore the smell of it(citrusy, but not orangey)... and it makes me feel a little more confidant that it has antiseptic qualities to protect me from germies. it feels, though, to me like most other lotions. maybe i can find a small container to bring a sample with me to naafa for you to try



golly, that's nice of you! please don't feel like you have to!!



ssbbwQT said:


> My PT told me to go to the drug store and buy a moisturizing cream for extra dry skin with NO fragrance. She recommended Eucerin, which you can buy the store brand of. As long as you get something that is FRAGRANCE-FREE, you should be ok. As for soap, something fragrance-free with lots of moisturizers...Olay is a good one. Also, I use the fragrance-free baby wipes to clean in the folds of my skin unstead of using soap. My skin breaks down when I use soap in the folds of the skin. Hope this helps!



thanks for the tips!


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## Isa

Sandie S-R said:


> Liz,
> 
> I don't have lymphedema, but am proned to some swelling, so I wear support stockings a lot too. I buy my own. I use the Mediven Plus brand because they have an extra wide calf. I wear their size VII Petite, open toe, beige, and they are knee highs. They really do help me avoid swelling. I wear them when ever we go out, and/or when I know I have to sit in my wheelchair for a long time. If I do not wear them, I puff up badly. The swelling does go away over night, but avoiding swelling in the first place is important.



You know Sandie I'm the same way. My doctor wrote a script for support stockings after testing showed there was no medical reason for my swelling. The attitude at the first DME provider I visited was less than helpful and turned me off from trying to locate some that would fit. Maybe it's time I try again. I'm limited in the places I can use due to insurance constraints so hopefully there's a local provider that carries Mediven Plus.


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## Tina

Yeah, Summer, some of that stuff is needlessly expensive. I needed new stockings but couldn't afford them. My PT needed a website. She bought me stockings, and I designed her a website.



SummerG said:


> does anyone here have special lotions or soaps they use on their affected limbs?


I use AMLactin lotion. I get the best price on it at Costco. I like it because it has lactic acid in it, which sloughs off the dry layers of skin, but I'm also convinced that regular use keeps cellulitis away (in my experience). I think the acid in it makes my skin an unfriendly host for various forms of bacteria and cellulitis.

As for soap, for some areas I use Trader Joe's castille soap, because it rinses off very easily, and othewise I use something from the Body Shop, that a friend bought me, or something from Lush.

This is the only shot I have of my legs nekkid, I think. It was taken a couple of years ago. They vary in size, depending on various factors, but never too much one way or the other. As you can see, I have it from feet to upper thigh.


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## Flyin Lilac

First off, thanks Summer for the tip about Lymphoderm. I had absolutely no idea that special lotions for lymphedema even existed. I've been using fragrance-free Lubriderm and/or Vaseline cocoa butter/vitamin E lotion. I'll have to investigate these other lotions further. Between old injuries, venous stasis and cellulitis on my rap sheet before I was finally diagnosed with lymphedema, both legs are "stained" and discolored. Plus I have frequent bouts of rash, dryness and itching on my shins where the discoloration is worst. Maybe Lymphoderm or some other specialized lotion will alleviate that.

Now to the point of my post, and I apologize for the length but it appropriately symbolizes the rigmarole we all go through between diagnosis, treatment, supplies and maintenance. No to mention the actual "pain and suffering" aspect.

I have been overdue for new compression stockings, and I have dreaded contacting my lymph clinic about it because I just didn't want to deal with appointments and the insurance hoops and blah blah blah. Conversely I'm not in the mood to get a raging case of cellulitis or worse because I didn't upgrade my stockings. About a month ago I told my primary care doc that I needed a referral to the lymph clinic to go order new stockings. The referral girl called me a week or 2 later to inform me: "That clinic currently doesn't have a therapist, so we'll have to find someplace that does, that your insurance will cover." Great. She found one at the impersonal ginormous megacorp hospital in my city (my regular clinic was part of the nice little Catholic hospital that even treated agnostics like me) and said she'd make an appointment. Didn't hear anything for a couple weeks, went about my business.
A couple of weeks ago I had to get an ultrasound at my friendly little Catholic hospital for an unrelated matter. While I was there I went up to the lymph clinic to see what the deal was. A woman who is apparently the manager of the lymph and wound care clinics (they have fused into one department, turns out) very kindly invited me into her office and listened to my questions. She explained that the previous therapist (whom I really liked) had left and they were currently looking for a new one, but until then they weren't really serving anyone except extreme cases. I said that was fine, that I wasn't in any trouble; I merely needed new stockings and could they re-order some for me. Answer: Since they're not really serving patients right now, they couldn't, but here's the business card for the supplier (50 miles away) who can fix you up with stockings. Oh and we don't know if your insurance will cover it or not, but call him anyway. I replied "Great, but I need a record of my measurements last taken here so he'll know what size stockings to get me, right?" She said, "Well our records are stored off-campus, so I'll have to try to track them down, but I'll do that today or tomorrow and contact you."

Haven't heard a word from her. Surprise surprise.

Meanwhile, I called the man on the business card and explained my situation. He was very friendly and eager to help me, and without my records was able to determine what size I needed (numbers on the tag inside my old stockings, duh). Then came the inevitable insurance question. I told him what company my employer uses, and OF COURSE that's one whose network he is not a member of. *sigh* I said "Well I'll just have to pay out of pocket, because I can't go without them. Seems to me the cost of a hospital stay for cellulitis would be a bit more pricey than the 76 bucks these stockings will cost." Long story short, I placed the order and resigned myself to paying upfront, but told the guy I'd call my HR person at work to find out what my insurance will do.

No sooner did I hang up the phone than my primary care referral girl called to set up an appointment at MegaHospital. No thanks, said I ... I don't NEED therapy --- I just need stockings. So there's one appointment I don't have to make or keep.

Now ... my next move was to call the HR person at work to let her know the situation. A few days and a few phone calls later, she assured me that yes insurance would cover him even though he's not "in network." However, I will indeed have to pay upfront, but he then will forward the receipt/payment info to the insurer and I will be reimbursed. So says the HR woman. We'll see.

Is it me or does this seem to be an inordinate amount of hoop-jumping and red tape and aggravation just to try to avoid a hospital stay, amputation or even death? At times I'm so frustrated that I could just cry; other times I'm just plain pissed off.

At any rate, my fresh new stockings should be here any day now. They'll even be "sexy" black instead of those horrid beige ones that just scream "INVALID."

Two last questions, and I'm sorry if I missed an earlier explanation. 
1. Summer, what are the "contour" things you mentioned a few posts ago? Something different from compression socks or the Reid sleeve "snowboots"? 
2. What is lipodema?


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## liz (di-va)

Tina said:


> I use AMLactin lotion. I get the best price on it at Costco. I like it because it has lactic acid in it, which sloughs off the dry layers of skin, but I'm also convinced that regular use keeps cellulitis away (in my experience). I think the acid in it makes my skin an unfriendly host for various forms of bacteria and cellulitis.



Interestin! That's the stuff I use on my feet  hehe. It seems too strong for my regular skin...it stings. But maybe I should think about using it occasionally...I mean, is it supposed to sting? Hhmmmm. Interesting!! Can see how that might work.

Great website !


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## liz (di-va)

Flyin Lilac said:


> Is it me or does this seem to be an inordinate amount of hoop-jumping and red tape and aggravation just to try to avoid a hospital stay, amputation or even death?



Yup, yes, yup. I have written something similar here before and ranted about it alot offline. I feel yer anger! I don't understand how doctors can be well-versed in/aware of/looking out for/quick to treat celullitis--that they're so fucking deadly serious about--but NOT what causes it! Even slightly, sometimes. Remotely. Is it because it's nothing they can get paid for? All the treatment occurs in the land of PTs and longer-term care and not-pills and not-surgery...


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## MLadyJ

This thread is filled with so much good information...hoohaa to whomever started it!!
A few months ago I started having very itchy skin on my legs (both have varying degrees of lymphedema) I was using Eucerin lotion recommended by initial therapist (something about maintaining ph levels). Nothing was working and the itching was driving me CRAZY..my dh decided to try Jergen's Ultra Healing lotion and whoa...it stopped the itching in hours. We figured out that the Eucerin just wasn't putting (and keeping) enough moisture on my legs..maybe in part due to the fact that I was very heavy weight compression stockings. My current therapist recommended the generic brand of Cetaphil (which you can get at K-mart and/or Wal-Mart).

To any and all who are planning on attending the convention there will be a workshop on Lymphedema put on by Nancy Ledeoux. She and I talk regularly about lymphedema and she has been great source of information to me.


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## Tina

liz (di-va) said:


> Interestin! That's the stuff I use on my feet  hehe. It seems too strong for my regular skin...it stings. But maybe I should think about using it occasionally...I mean, is it supposed to sting? Hhmmmm. Interesting!! Can see how that might work.
> 
> Great website !


Yeah, I use it all over, but not on my face or neck. It stings at first and then your skin gets used to it. But read the site and see if any of the contraindications would apply to you. I've never had any problem with it at all, and only had cellulitis once, when I was first diagnosed. Do wash your hands after, because you really, really do not want to get it in your eyes!


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## LillyBBBW

I don't have swelling terribly bad. I shower with loofah hand gloves, use a soap for sensitive skin and I moisturize with a generic form of Cetaphil body cream. I bought a tub of Eucerin just to try it out and didn't like the consistancy. I felt like it just coated my skin like Crisco and didn't moisturize very well. For the past week or so I've been using Neutrogena Body Oil and I love it. Problem is that it is messy and gets all over the floor and the tub, but it has been excellent for my skin.


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## Cinda

Lily be very careful with that oil, you dont want to slip on the residue left on your floor or shower/tub after washing.

I have itchy skin on my legs that drives me nuts. I have tried all kinds of lotions, oils, vaseline, etc and nothing works so far--guess I'll try Tina's stuff. Hope it works. Thanks for all the good info girls...


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## LillyBBBW

Cinda said:


> Lily be very careful with that oil, you dont want to slip on the residue left on your floor or shower/tub after washing.
> 
> I have itchy skin on my legs that drives me nuts. I have tried all kinds of lotions, oils, vaseline, etc and nothing works so far--guess I'll try Tina's stuff. Hope it works. Thanks for all the good info girls...



Think it might be the soap Cinda? I used to use Suave brand body washes and noticed that my skin tends to shed dead skin a bit more with it than with other things. Turns out that there's some ingredient or detergent in it that my skin reacts to causing it to peel and promote bacterial/fungal growth - no matter what moisturizer I used. I'm sensitive to a lot of the body washes on the market today so I have to be careful. Maybe try a gentler soap or a baby wash for a while and see if that helps?


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## Cinda

LillyBBBW said:


> Think it might be the soap Cinda? I used to use Suave brand body washes and noticed that my skin tends to shed dead skin a bit more with it than with other things. Turns out that there's some ingredient or detergent in it that my skin reacts to causing it to peel and promote bacterial/fungal growth - no matter what moisturizer I used. I'm sensitive to a lot of the body washes on the market today so I have to be careful. Maybe try a gentler soap or a baby wash for a while and see if that helps?



Well I am allergic to soap, therefore , except for shampoo I don't use any. I know that sounds like I am dirty but I really am not. I have tried nonsoap washes but everything irritates my skin. (I even had a bf once whose touch irritated my skin, lol). I think its probably a comination of shampoo residue and some other allergen. I also find that laundry detergent and fabric softners irritate me sometimes. I just do the best I can. Cortisone is useless so I just try to keep my skin moist and not scratch cuz who needs cellulitis right? Sometimes I think I'm allergic to myself....:shocked:


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## Tina

Oh, man, that really makes things difficult, Cinda. I'm guessing you've tried castille soap? I use the liquid stuff that trader joe's makes and it's very mild and leaves no residue. But if you're that allergic, maybe it wouldn't matter how mild it is.


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## LillyBBBW

Cinda said:


> Well I am allergic to soap, therefore , except for shampoo I don't use any. I know that sounds like I am dirty but I really am not. I have tried nonsoap washes but everything irritates my skin. (I even had a bf once whose touch irritated my skin, lol). I think its probably a comination of shampoo residue and some other allergen. I also find that laundry detergent and fabric softners irritate me sometimes. I just do the best I can. Cortisone is useless so I just try to keep my skin moist and not scratch cuz who needs cellulitis right? Sometimes I think I'm allergic to myself....:shocked:



Cinda, there is an item that Mary Kay used to put out but they have since discontinued it. It's called 'Calming Influence' and it's a clear gel to sooth itch and irritation. Works better than calamine, better than Benedryl it is the BEST stuff on earth!!! Mary stopped selling it because frankly they sold a little 4 oz bottle for 25 or 30 dollars. NOBODY wanted to pay for it so it didn't sell very well but it's the only stuff I've ever found that actually does what it says. I've been buying them up on ebay to stock up, I don't know what I'm going to do when the earth's supply runs out.  And I kid you not the stuff even stops mosquito bites from itching, has no sting or tingle to it - It's fantastic!


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## ssbbwQT

ahhhh, the good ole' days! lol! been there and done that...i still use the bandages too when my legs feel like they are getting too big. although the compression stockings aren't a walk in the park, they are sooo much cooler and comfortable than the bandages! thanks for the fun pics!!


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## liz (di-va)

I've been a-listening in to lotion chat--great to hear the info. It's helpful to know how people deal with things _individually_. My PT recommends lower Ph stuff like Eucerin, but you really have to go with what works! And everyone's skin is different.

BTW, one thing that continues to help my skin is taking acidopholus! Not surprisingly, my body was battling thrush hard after that recent round of gnarly antibiotics for cellulitis in April/May. The acidopholus helped clear up any fungal wanna-be-ness in skin folds, etc.


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## LillyBBBW

Has anybody tried doing those inverted leg exercises? I've got heavy legs and weak abs so I dothem with a scarf. Just lie on your back, straighten your legs up in the air and do some knee bends up and down into the air, or do a cycling move. The scarf offers good traction and support. I've been doing them in an effort to keep my edema from getting worse. Has anyone tired it or had any success with it?


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## Sandie S-R

Isa said:


> You know Sandie I'm the same way. My doctor wrote a script for support stockings after testing showed there was no medical reason for my swelling. The attitude at the first DME provider I visited was less than helpful and turned me off from trying to locate some that would fit. Maybe it's time I try again. I'm limited in the places I can use due to insurance constraints so hopefully there's a local provider that carries Mediven Plus.



Isa...

You don't need a local provider. Google Mediven Plus, and find a web site that suits you. There are quite a few. Have a friend or relative help you measure your leg, (calf, ankle and length), and then order the correct size. That is what I did, and it has worked well. I usually order 3 pair at a time now and I get a discount, but first time out, just try one pair to see if it works for you. Do not forget a pair of "It Stays" body glue. You will need it.


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## liz (di-va)

Tina said:


> Nope. I really should look into it more, but I don't think anything can be done about it. I have it, too, and honestly, it's worse than the lymphedema, because while treatment can make the lymphatic fluid move, the lipodema doesn't do much of anything. It also hurts like a bitch, and is the reason why my PT has to be very careful not to bandage me even a little too tightly. If it's definitely too tight from the start, she has to hurry up and unwrap the offending area until it's not too tight. If it's not way too tight, but somewhat too tight, which is the kind of too tight that builds, then I'll have to unwrap myself within hours.



I've been doing more reading about lipodema...my PTs are convinced that's from whence springs my lymphedema, and you're right, there's really nothng you can do about it. Except wear compression garments around the heavy areas and swim. Which I'm gettin geared up to do. But it explains so much, including the leg pain I've had the last few years, the saddle bags that showed up in my puberty, even though they've gotte much bigger in recent years, obviously...

I also think it's fascinating that this is an area where diet's don't work. I don't mean that in the usual way, I mean you could starve on a desert island your legs wouldn't get thinner. It's like (reading twixt medical lines) the Fat That's Not Yer Fault. Hah. 

Well, anyhow, just musing. Since the beginning my PTs have wanted to wrap my hips in a spica, but I can't imagine living life with one of those. Logistically impossible. So pantyhose compression stockings for me...


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## Tina

What is spica, Liz? Never heard of it.

I, too, have saddle bags, though the one on my right leg is bigger than the one on the left. My legs have always been big (large arms and legs are hereditary on my mom's side of the family, and I take after my mom's side, while my sister, the younger one, takes after my father's side). So you can see that I still had big legs and big knees, big ankles (though they don't show in that), even as a child. I was about 12 there.

I would love to have daily use of a pool!


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## MissToodles

Just curious, does anyone have good doctors/pt that they can recommend in ny? I'm pretty sure I have lymphaedema, but my last doctor told me to "lose weight". I want to post a photo of my legs, but feel self concious of doing so. I have a heavy feeling in my right leg and is slightly larger than the left one.


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## liz (di-va)

Tina said:


> What is spica, Liz? Never heard of it.
> I, too, have saddle bags, though the one on my right leg is bigger than the one on the left. My legs have always been big (large arms and legs are hereditary on my mom's side of the family, and I take after my mom's side, while my sister, the younger one, takes after my father's side). So you can see that I still had big legs and big knees, big ankles (though they don't show in that), even as a child. I was about 12 there.
> I would love to have daily use of a pool!



Interestin',T. It sounds like lipodema has really strong hereditary component, from what I read. And as ever with stuff in this thread, totally misunderstood. I mean, I don't understand it either, but I can see enough of the effects to know that not diagnosing it causes a lot of harm!

My saddle bags were pretty small--yet indefatigably there--until last 3-5 years, when all this got worse.

A hip spica as my PT uses the term is compression wrapping that goes all around one or both hips, thus compressin' the old saddlebags. Spicas seem to be a helpful tool as long as you never: menstruate, have sex, sweat, pee, poop, or in fact do anything other than stand at attention like a nutcracker, including getting in and out of bed. No way! So I'm supposed to wear compression bike shorts when I don't wear compression pantyhose. Oyungh.

I would LOVE (logistically easy) daily use of a pool, too! Love...LOVE! Am seriously thinking about gearing future life decisions around pools.  Pools, hottubs and whirlpools. I am lucky to have a gym nearby with one, but I suppose I am greedy. They're just so good for all this...


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## LinCanDo66

I've been reading this thread and not sure what I have! For probably 9 months now I've noticed the back of my right thigh looks more swollen than my left thigh. I have always had big thighs, and the times I have lost weight they've gone down too. But now I've noticed the back of my right thigh bulges a bit more than the left one. I measured in the same spot and there is a 3" difference. The skin there does get itchy but I try not to scratch it as this will cause sores. Anyone have any ideas as to what this is?

Thank you for the freedom to ask these questions without being embarrassed!


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## Tina

Lin, does it pit when you press it with a finger tip for a few seconds? It's doubtful that it's muscle, though you can flex and see if it is. Is the skin any different there then on the rest of your legs? Bumps or a different texture?


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## Sandie S-R

Tina said:


> Lin, does it pit when you press it with a finger tip for a few seconds? It's doubtful that it's muscle, though you can flex and see if it is. Is the skin any different there then on the rest of your legs? Bumps or a different texture?



You know it would be very helpful for those who are questioning if they might have Lymphadema, if there were a list of specific symtoms (maybe with pics) of what to look for.

Tina what you mentioned here is good, but maybe even more. You mention "bumps". What kind of bumps? Postpxplstnks. 

If we have this here, then people can compare their symptoms and if they see similarities it would suggest a trip to the Doctor is in order. This would be very good info for us all to have, since this seems to be more common than we have been aware of.


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## Sandie_Zitkus

Lilly try this place:

www.touchofpinkcosmetics.com

It's where I buy my MK - prices are good and if you need something they don't have, e-mail the owner and she will do her best to find it for you. 




LillyBBBW said:


> Cinda, there is an item that Mary Kay used to put out but they have since discontinued it. It's called 'Calming Influence' and it's a clear gel to sooth itch and irritation. Works better than calamine, better than Benedryl it is the BEST stuff on earth!!! Mary stopped selling it because frankly they sold a little 4 oz bottle for 25 or 30 dollars. NOBODY wanted to pay for it so it didn't sell very well but it's the only stuff I've ever found that actually does what it says. I've been buying them up on ebay to stock up, I don't know what I'm going to do when the earth's supply runs out.  And I kid you not the stuff even stops mosquito bites from itching, has no sting or tingle to it - It's fantastic!


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## LinCanDo66

Well, it's on the back of my thigh so it's hard for me to really see. I can't really tell if it pits or not. It's almost as though it's a mass of fat just above my knee on the back of my thigh. Sometimes the skin looks a little reddish and almost looks like a "hump" back there when I look in a mirror. I have a sense that sometimes it's more swollen than other times. I guess I'm going to have to ask the doctor to look at it. Time to suck it up and take it like a fat girl!


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## Tina

*Lin*, I think you definitely should see the doc, but also make sure s/he is well-versed in lymphedema. Otherwise, I would ask to a referral to a specialist for an accurate diagnosis.

Here is the website for my original, and fabulous!, lymphedema therapist, Leslyn. It has info on there, as well as resources. The National Lymphedema Network is invaluable, and has a listing, by area, of respected lymphedema therapists -- it's how Vickie found Leslyn for me when I couldn't find anyone and was desperately in need of help. kiss2: Vickie :wubu: )
*
Sandie*, I don't really have photos of the bumps, just the one of my legs, above somewhere. If you look here, and scroll down to "After day one treatment" and look at the photo on the right, you can kind of see those bumps. They just look like skin with bumps, not pustules, but what it is is lymphatic fluid trying to get out so it forms bumps on the skin. Legs with advanced lymphedema can also actually leak lymphatic fluid, which looks just like water but isn't. That is a good page for anyone who wants to see what very advanced lymphedema looks like, and what it looks like when it's treated before and after. Those photos can also be scary, though, and remember that if you are in the early stages, that does not have to be you, if you get treatment and take care of yourself.

These places below are very helpful:

-- Lymphatic Research Foundation
-- National Lymphedema Network
-- Lymph Notes
-- Circle of Hope, Lymphedema Foundation


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## liz (di-va)

I need to flomp down in the Lymph Lounge and note that I am wearing my new stockings for the very first time and they SUCK. They're just not quite right, so I have that draggy-crotch feeling pantyhose can give you (you know, from trying to fit over a tum but then back under, then out again), but with a factor of like...10 bizillion. Am trying not to get completely homicidal over this, as it is just a first pass, but gawd. I swear bandages were easier than this. Plus when I left the office it was a comfy 95 degrees outside, so you know...grrr. Not a cute grrr, just GRRRRR! Anyhow, more as it comes. Perhaps they will loosen up just enough to be just right. Or the tweaks the orthotics co. do will really work. Oy!

TOODLES - I don't know anybody in NY, but I could ask my PT if you'd like. Have you had any luck?

ETA: PS and my fingertips are super-sore from trying to drag these stupid things on. Oh the noises I made?! Has anybody ever made a video for FAs of fat chicks trying to put on compression stockings? Total gimme. 15 minutes of grunty groany (misery for da chick but maybe) fun for the Appreciator. Hah.


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## Tina

Honey, those rubber cleaning gloves are your best friend. Without them you cannot get traction, and you could even end up making a hole in them if you have nails.





Also, who made your stockings? My first pair were the full on 'tights' style and I hated them, with a passion. The crotch dragged and they didn't fit right, so my orthotics guy sent them back to Jobst and told them to make thigh-highs with them at my request. I've never looked back and cannot imagine having the full-on pantyhose thing goin' on.


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## ssbbwQT

liz (di-va) said:


> I need to flomp down in the Lymph Lounge and note that I am wearing my new stockings for the very first time and they SUCK. They're just not quite right, so I have that draggy-crotch feeling pantyhose can give you (you know, from trying to fit over a tum but then back under, then out again), but with a factor of like...10 bizillion. Am trying not to get completely homicidal over this, as it is just a first pass, but gawd. I swear bandages were easier than this. Plus when I left the office it was a comfy 95 degrees outside, so you know...grrr. Not a cute grrr, just GRRRRR! Anyhow, more as it comes. Perhaps they will loosen up just enough to be just right. Or the tweaks the orthotics co. do will really work. Oy!
> 
> ETA: PS and my fingertips are super-sore from trying to drag these stupid things on.




Don't worry, it gets easier, believe me! I've been wearing full pantyhose compression stockings for years and once they soften up (give it a few weeks and a few washings) you should be comfy. It definitely takes some getting used to, but the funny thing is, I'm so used to them that I don't like how I feel without them! Although the summers are dreadful, I find the stockings are alot cooler than those awful wraps! Anyhoo...use the grip rubber gloves to help get them on. After some practice, you'll be getting them on in no time! Good luck and don't give up!


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## liz (di-va)

This thread rocks, it really does. This whole lymph. experience has really been hard for me--esp this part of the transition has been miserable--and I really appreciate people's thoughtful, experienced responses.

Thanks also, Sam, Tina, for settin the right tone in here. 

Tina: Duly noted about the gloves (fingers are killing me). And I have an appt on Thurs to order knee-highs and thigh-highs. The only reason I'm also looking at 2x/week wearing the stockings too is the lipodema...sigh. Otherwise I wouldn't be bothering. I have definitely been encouraged by what you've said about thigh-highs! It's partly why I'm giving them a chance (my PT hadn't had such good luck, but I said--hang on a mo! ). I'm also going to a pharmacy/med supply place tomorrow to try to get off-the-rack knee-highs in the right size (cross yer fingers).

SSBBWQT: Thanks for the encouragement. I bet this will get better. I wasn't even sure if I should post yesterday, I was so miserable, but I guess that's just how this stuff goes! Helpful to hear how things have gone for you!

Thanks again--


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## Miss Vickie

Liz, I had to wear thigh high compression stockings after my varicose vein fixin' surgery, and I have to tell you that I was amazed at how well they held up. I was able to wear them during 12 hour shifts running around a bunch and even THEN they stayed up. Amazing. I think the key is getting the right fit, as well as the fact that they have little rubber nubbies on them that help them stay up. Tina also said that there's a roll on adhesive that helps, too. I didn't have to try that but it's good to know it's out there.

I'm so glad that this thread -- heck, this entire forum -- exists so that people can help each other out and provide resources. It rocks -- as does Sammie, who's doing a great job moderating it.


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## liz (di-va)

Just checkin in here, kidlets--been meaning to for a while. Thread momentum got derailed a bit by trolldom, but fabulous ops kicked ass as usual.

More about my own interactions with the big L: I had my custom-made full lengths re-made, and they're fittin' much better. They are, however, hella itchy after about...3/4 hours. I mean, the parts on which I sit (bum, backs of legs). IT's like that itchy feeling you get sitting in a wet bathing suit, only worse! Yerk! I have ordered thigh highs, though, and a few more knee-highs in nonfugly black. Wahoo!

I've noticed that the compression from the stockings, now that I'm out of bandaging, is good, but that my legs really miss the good massage. They seem a little "hard"/thicker. I think they'd soften up/stay better decongested with a better massage than the ones I give. May try to incorporate more into regular routine somehow.

I'm flyin to Vegas Thursday...anybody have any flying advice? I will look through this thread/the DVT thread to see if anything seems relevant.

Anyhow, just bumpin the thread! Hallo!


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## Tina

Hey Liz. 

I had a physical therapist tell me that a good thing to do when traveling is the start with the feet and work all the way up to the buttocks, clenching for a count of five and releasing for a count of five. Getting up and walking when you can is good, too, but IME, the narrow aisles in airplanes don't exactly encourage that sort of thing for us big girls.

I, too, miss good lymphatic massages. I can't really do them for myself, and even if I could, it just wouldn't work well. What I'd really love is a pool that I could use every day (one that's heated enough so that I don't freeze, as I get cold easily). THAT would be heaven.


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## Miss Vickie

Liz, what Tina suggested is great. Just concentrate on the various muscle groups in your legs and work your way up. Also, try pointing and then flexing your feet; that, too, stimulates the calf muscles. Obviously getting up and walking around is great if you can do it, although I know navigating those aisles is tough.

As for your itchy thigh highs I tried baby powder when I was wearing support hose after my (totally useless) vein surgery. I just put a little bit on before putting the stockings on and it made a world of difference. I get horribly itchy from them and can't even wear panty hose because of the itch.


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## ThatFatGirl

It's official. I have lymphedema per my new doctor. The only recommendation for treatment she gave is that I cut down on salt, drink more water, try to exercise more, get my feet elevated above my head daily and to wear compression stockings as much as possible. I am going to follow this advice for now and see what happens. I have an appointment to see her again in one month (follow-up on blood pressure meds) and will talk to her about further treatment if this doesn't seem to be making a difference. I wish I would've asked more questions. Frankly I was just kind of stunned by the diagnosis as my previous physician who I saw quite frequently for the reoccurring cellulitus in my lower left calf, never used the term lymphedema. 

I have been browsing the site Tina linked to early in this thread and believe I have stage one lymphedema because my leg usually looks nearly normal in size each morning when I wake. I have had cellulitus so many times in this spot, I've nearly lost count and the skin is quite damaged there. I have toeless knee-high compression stockings (medium and firm compressions) purchased from www.footsmart.com, but have issues with fit as they often crease around my ankles after a short time of wear, especially if I'm moving around a lot. Does anyone have any suggestions on where to get stockings that fit bbw calves without getting custom made ones? I think I might try cutting the feet off one pair and seeing if that helps. Also, I've tried to find an online source for custom made stockings where I might just send my measurements in, but had no luck there. Does such a place exist?


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## Tina

Laura, a few things:

Will your doc recommend you to a lymphedema therapist? That would be your best option, if you have a good one in your area (the operational word there being "good," as an inadequate one is worse than none at all). S/he can show you specific exercises and give you advice to help you from progressing with the lymphedema.

I use Lactaid lotion, and I believe that regular use, for me, has kept cellulitis at bay. I had it once, early on, and after that have used the lotion and never had it again. That was about 5 years ago, or so. It's made from lactic acid and I believe, though I have no proof, that the acidic environment it creates is unfriendly to bacteria. Makes your skin soft, too.  

Do the ankles of your stockings bind because they fall down, or because they are too tight?

Some suggestions:

If the ankles are too tight, you can take an smooth object that is bigger than your ankles and insert it where the ankles would be in order to stretch them so they don't bind.

If the stockings roll down, you can try using something like It Stays! to keep them up. It's sticky stuff, but it washes off with water. I use it on my thigh-highs.

Do not NOT cut out the feet of your stockings. Like electricity, lymphatic fluid takes the path of least resistance, and with the pull of gravity, your feet will swell incredibly. Also, once fluid swells a portion of the body, it will always want to go there again. So it is important to have your feet compressed so the fluid will travel back up your legs as you walk. If you exercise, walk, whatever, do it with your stockings on, as that compression combined with your muscles will get the fluid moving. You do not want to have any stockings that bind or that cause fluids to build up in other areas. The custom garments may be expensive, but believe me, if it would prevent you from moving to stages 2 and 3, they would be well worth it, dear. I would not want to see you progress.


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## ThatFatGirl

Tina said:


> Laura, a few things:
> 
> Will your doc recommend you to a lymphedema therapist? That would be your best option, if you have a good one in your area (the operational word there being "good," as an inadequate one is worse than none at all). S/he can show you specific exercises and give you advice to help you from progressing with the lymphedema.




My doctor didn't recommend seeing a therapist, but I think it is a good idea as you suggested to avoid further progression. I'll do some research and see what I can find or ask my doctor.



Tina said:


> I use Lactaid lotion, and I believe that regular use, for me, has kept cellulitis at bay. I had it once, early on, and after that have used the lotion and never had it again. That was about 5 years ago, or so. It's made from lactic acid and I believe, though I have no proof, that the acidic environment it creates is unfriendly to bacteria. Makes your skin soft, too.



Adding Lactaid lotion to my shopping list. I just seem to be clumsy and often knicking the skin in this area of my calf. I've developed the condition after a "love nibble" from my cat, walking into a slightly open filing cabinet at my old job, rubbing against the edge of a basement step, and the very first time I got it after shaving my legs.



Tina said:


> Do the ankles of your stockings bind because they fall down, or because they are too tight?




It's hard to say as the fit is just so off. My stockings are too long. I roll the top band down just below my knee and roll the toeless ends of the stockings back onto my feet as well. The ankles do feel tight, so I will try stretching them out. Thank you for warning me about what could happen by cutting off my stockings too. Yikes. Glad you saved me from experiencing what could happen there.

Thank you for the good advice, Tina. I greatly appreciate it!


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## Tina

You're welcome, honey. I don't want you to have to go through what I did, and in that vein, I'm glad you got it diagnosed now. You may have to push your doctor a bit, but it's worth it, and after all _he_ works for _you_. Sometimes they forget that...

Any binding is a bad thing, which includes if the part you're rolling down at your knee is binding. If you pull them up all the way, do they fit the parts you've pulled them up to? If so, rather than rolling, you're better off using the ItStays!, or something like it. The guy I buy my stockings from has one made by Jobst (the German manufacturers of my stockings). When you see your Lymph therapist, they should have some, or can get some for you, too. I'll bet you can also find it on Amazon, or some other place online. Just do avoid any binding, and get in the water whenever you can. Water is fabulous for lymphedema, as it provides constant and even pressure to your legs, so it gets the fluids moving. I would imagine that even a bath would help, though the best is a pool, so you can kick and water walk, to get the fluids moving even better by moving as you're being compressed.

And the AmLactin (I was tired and called it Lactaid -- which is milk for those who are lactose intolerant! Oy vey.) can be purchased at the best price, IME, at Costco. Twice a day is good, especially at first, and a good spray with Bactine on any area you have scratched from itching, the cat scratches, bumps, etc., immediately.

Hope I'm not talking your ear off, Laura. I'm concerned that you not progress any further. Lymphedema is no fun.


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## ThatFatGirl

Tina said:


> Hope I'm not talking your ear off, Laura. I'm concerned that you not progress any further.



Are you kidding? I am so very, very grateful to you for taking the time to give me all this information. Thank you so much. Also, thank you to Liz for getting this thread started and everyone else who has contributed to it.


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## liz (di-va)

Laura!

I'm sorry I didn't have a chance to respond to your posting until now. Has been bouncing around the back of my brain, though. And since I just came home from a fitting for my new compression thigh-highs, I feel well-jazzed to add a few things to what Tina's already said, also possibly repeat them, which I will try not to do! 

* THE KNEE-HIGHS/custom-mades/ETC.

I have had the *exact* same problem with knee highs you did, in both my first two styles. The problem is that they're too long (when they're wide enough), as you know, and the bunching below the knee is bad, sort of defeats the purpose, and then there's creasing at the foot, which HURTS and defeats the purpose too. Tina's right, DON'T cut off the toes of a pair of knee-highs. The rule of thumb is to have the compression extend one joint in either direction from the effected area, so ideally, your garments will cover your ankle (onto foot) and knee. As far as the ones you already have, you can put cotton around your ankle under your stocking, or otherwise protect them in the meantime, but here are the two different solutions I've sought: 

One is that it turns out that at least two common brands (Juzo and Mediven) sell knee-highs in the right width (in my case, anywhere from a size V to size VII) that are also proportioned "short" or "petite." So look for those. (Also: I couldn't get a good read on the ones on the Footsmart site, but the compression seems a little low (18-24)...I'd guess you might want 20-30. Maybe.) They might work for you, I'm hoping they will for me. 

The other thing I'm doing is going with custom-made knee-highs as well. I really like how the (custom-made) thigh-highs fit (THANKS Tina  for suggesting), and both the full-length and these thigh-highs have "creases" - seams - darting - built into your joint areas, so you both (1) know when they're on correctly because the seams are in the right spots behind your knee, at your ankle, etc. and 2) have some give/bendiness built-in the right spots. You might want to think about the thigh-highs too. I feel like the compression's better in my calf when it goes up over the knee, as it should, and my knees feel much more comfortable and supported.

I do all this through insurance, a firm that deals with the garment maker and helps me get fitted when they come in. Not sure about places that would make garments for you directly (measuring for these things is kind of complicated and would be hard to do yourself), but I'll ask my PT.

* My BP has been very directly effected by my lymphedema--that is, once it was treated, my high BP went away. Keep an eye on it, be prepared to notice how it is effected by things.

* I find the Lactaid lotion way too strong for my skin. It's great for my feet, but too much for the rest of my body (makes my skin more sensitive and red, stings). Everybody is different, though, esp. skin, so you should try what works. Just noting! It sounds like Tina's had great results with it.

* Tina is so right about the water. I am seriously thinkin a lot these days about how to get nearer to a pool! It's turning out to be really crucial to my legs' health. Cool water. Not hottubs, unfortunately, those are bad.

* I bought this product at my PTs instructions to use under stockings/wrapping when I had a little cut or something, or any skin opening, after it had been disinfected. It stays in place, helps things heal correctly.

* Tina's also right about this: if you have a diagnosis for lymphedema, then you should be able to get lymphedema treatment! Especially if you're in stage one, it sounds like...massage/wrapping could do a lot of good.

I wonder why no one thought you might have had this before? It's not normal to keep getting cellulitis in your leg like that. Not that it necessarily had to be lymphedema (although it would have made sense), but it's odd that nobody said something more! Or not. We all have our own stories about this.

Clearly, we all need a Big Fabulous Pool to be in all the time!  My leg has not been happy in recent weeks (it's up almost 10 cm) due to flying, stress and stockings problems, and I, for one, wish I were floatin in a pool right now!

Good luck. I hope I didn't repeat things too much! I think you're gonna have great results if you hop on this.


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## Tina

You're welcome, Laura, and the best to you. 


liz (di-va) said:


> I really like how the (custom-made) thigh-highs fit (THANKS Tina  for suggesting), and both the full-length and these thigh-highs have "creases" - seams - darting - built into your joint areas, so you both (1) know when they're on correctly because the seams are in the right spots behind your knee, at your ankle, etc. and 2) have some give/bendiness built-in the right spots. You might want to think about the thigh-highs too. I feel like the compression's better in my calf when it goes up over the knee, as it should, and my knees feel much more comfortable and supported.


You're welcome, Liz. Aren't they fabulous? I'd never go back. I've had them in black and chocolate brown and like each color. I've heard that some place does them in tye dye -- I think that would be groovy.  


> * I find the Lactaid lotion way too strong for my skin. It's great for my feet, but too much for the rest of my body (makes my skin more sensitive and red, stings). Everybody is different, though, esp. skin, so you should try what works. Just noting! It sounds like Tina's had great results with it.


Funny how that goes. I use it all over, breasts even, and it makes my skin so soft. Especially my legs, if I put it on before pumping, under leggings. The smell isn't vile but it's nothing to write home about, either, but yeah, it works for me. Sorry to hear it's too strong for you, Liz.


> Clearly, we all need a Big Fabulous Pool to be in all the time!  My leg has not been happy in recent weeks (it's up almost 10 cm) due to flying, stress and stockings problems, and I, for one, wish I were floatin in a pool right now!


Right on and amen!


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## rainyday

Just posting to share a compression garment success in case it helps someone else. 

I'm what I guess you could call an hourglass with a hefty helping of bonus butt and my lymphedema is only in my upper legs. In other words, my legs are normal from the knees down and the swelling is only from knee to groin. Because of this, getting a compression garment that fits has been a 4-year project. Yes, four years. At least four times I've been through the bandaging, got my legs reduced, got measured for a garment, then had it not fit or if it did fit, have it not stay up for more than 30 steps or so, making it worthless. Then my legs would re-swell while we remeasured, ordered a new one, and repeated the whole not-fitting process. The difference in my upper and lower legs is what causes the problem. Even if a garment provides complete coverage, the smaller circumference of my lower leg works with gravity to pull the garment down with each step.

I'm not even sure now how many garments I've ordered and tried over that time--I think it's probably six or seven. I've tried both the capris and the chap-style, which is a separate piece for each leg, joined by a belt. I've been so hard to fit that the PTs who were working with me kept trying to get me to just wear garments that didn't fit properly. :doh: It boggles my mind that a health care professional can actually expect you to wear a garment that you have to walk around holding up with one hand (and then have the temerity to scold you when you refuse). Hello? I'd like some kind of quality of life. I've been such a thorn in their side that three times they've made the garment rep come into the office to measure/fit me personally. Still didn't work.

Since the second garment (about three years ago), I've been telling them that I wanted to try thigh highs because Tina has long told me that hers work well. Both PTs and the garment rep insisted over and over that they would never work on my body/leg shape and would just roll down. Since my insurance will only pay for a new pair every six months, wasting a shot at something they swore wouldn't work seemed impractical, and they refused to order it for me anyway. Finally a couple months ago I told them I was designing my own garment, that I was going to self pay and that they just needed to order it.

What I ordered was a thigh high that ends just below my knee for the upper leg and knee highs for the lower legs. The rep insisted she couldn't guarantee whether this set up would work because the company had never made a shortened thigh high like that before. Fine, just order it. Viola! When it arrived, for the first time I actually _almost_ had a garment that worked. Because the pieces aren't connected, the smaller lower leg doesn't tug the upper garment down with each step. I say almost because the left thigh piece was too large at the top and the right thigh piece, for some unknown reason, was about six inches shorter than what we'd ordered and didn't provide complete coverage. I took the left thigh piece to the a seamstress with a serger and had her sew a vertical dart into it. We reordered the right thigh piece and told them to make it longer. For some unknown reason they said they couldn't do it by machine so the thing had to be hand loomed, which took three weeks. When the replacement arrived, they'd made it longer but had mixed up the order and sent a chap style (!!!!!). Reordered again. Waited another three weeks. Finally last Thursday the right thigh piece came in. It's too long by about six inches (at this point I don't even ask why about these things anymore), so it will have to go to the seamstress for shortening, but both it and the left piece FIT and STAY UP!!! I need a drink. A tall one.

All this to say, *if you have a disparity between your upper and lower legs, consider trying a shortened thigh high plus a knee high*. It's the only thing that seems to work. I love the thigh highs, btw. I use a little of the ItStays on the outer thigh, which is where they tend to roll if they're going to at all, and it's good for all day. I've also worn my garments at night with no problem.

One other caveat to pass along--never wear a capri or other full-leg garment that doesn't come all the way up to the crotch. My very first garment was short by about six inches in the crotch. I was new to all this and when my PT told me to "try it just for the rest of the day anyway" I did. The lack of coverage at the top of my leg created a skin fold and bulge on one leg that has continued to swell ever since. (Idiot :doh:.) I reminded the PT several times afterward that that bad judgement created a permanent problem because I wanted to make damn sure she never recommended that to anyone else. Finally with the thigh high--which comes properly all the way to the crotch--that bulge is going away.

The whole treatment of lymphedema feels like it's stuck in the era of bleeding and leaches. And getting anyone to listen to you as you tell them what works for YOUR body is a constant uphill fight, at least in my experience. What a crazy, frustrating condition this is to have to try to treat.


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## Miss Vickie

Oh, honey. I'm so sorry to read about all your struggles. It's just crazy that it took so long to get this right.  I'm glad to hear, though, that you have something that works. I do have a question, though. Does the fact that you have two garments on each leg cause any kind of bulges at/around your knee? I'd worry that if a space developed there, you might get a bulge or swelling. Or does one cover the other?

Keep up the good work, and the awesome advocacy you're doing for yourself. I think we can all learn a lesson from your persistence.


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## liz (di-va)

oh blimey, Rainy....BLEAH! Vickie's right, your tenacity is a lesson here. About the nature of the disease, the weird world of healthcare for it, and how you are to be admired!



rainyday said:


> What I ordered was a thigh high that ends just below my knee for the upper leg and knee highs for the lower legs.



Okay, just so I understand...you basically now have like like bicycle shorts that come from top and knee highs that come from bottom? And overlap?



> One other caveat to pass along--never wear a capri or other full-leg garment that doesn't come all the way up to the crotch. My very first garment was short by about six inches in the crotch. I was new to all this and when my PT told me to "try it just for the rest of the day anyway" I did. The lack of coverage at the top of my leg created a skin fold and bulge on one leg that has continued to swell ever since. (Idiot :doh:.) I reminded the PT several times afterward that that bad judgement created a permanent problem because I wanted to make damn sure she never recommended that to anyone else. Finally with the thigh high--which comes properly all the way to the crotch--that bulge is going away.


I am finding this part of lymphedema much more inconvenient than I thought when everyone thought it was just in my lower extremities. I have it in my hips, my groin, my stomach...it is weird and mercurial that way, and definitely better--as you say!!!--when it's all squozed in. Also: I don't know about y'all, but I suffer from a huge amount of pain when it's bad in these areas. Walking is so miserable...

Congrats on getting something that works for you, R!!! You should be really proud of that. HOpe it continues to work well--


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## Tina

Liz, I think Rainy has the equivalent of thigh-highs, except that they are in two pieces, ending, and then starting again, at the knee.

Rainy, I am so thrilled that it's working for you. Life is miserable, IMO, when my legs are just filling uncontrollably. Makes walking harder and then the nerve pains. Been pumping my legs more and that helps, too.

It's just remarkable how inept these companies. They really need someone to give them a run for their money. Between the pricing and the ineptitude, I've often thought that if I had the dosh I'd like to start my own line of compression garments. You know, something SANE.

BTW, seems like your ins. co. can't really turn you down on that kind of garment now that you ALL know it works.


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## rainyday

Thanks Vick, Liz and Tina. No advocacy kudos deserved though--I really was a patsy for waiting this long to insist they listen to me. Being assertive is difficult though when you're standing in your undies under bright exam room lights and a stranger is crouched at crotch level wrapping stretchy strips around your leg. 



Miss Vickie said:


> I do have a question, though. Does the fact that you have two garments on each leg cause any kind of bulges at/around your knee? I'd worry that if a space developed there, you might get a bulge or swelling. Or does one cover the other?


No, the whole leg is covered. The thigh high overlaps the knee high by a few inches, though it's not as snug at that point as above, so the pressure isn't really doubled there. 



liz (di-va) said:


> Okay, just so I understand...you basically now have like like bicycle shorts that come from top and knee highs that come from bottom? And overlap?


No, not a short. As Tina said, it's an individual thigh high piece on each leg just like if you had on thigh high nylons. Only instead of going all the way down to the foot, they stop at just below the knee. And on the lower leg I wear a knee high.



liz (di-va) said:


> I have it in my hips, my groin, my stomach...it is weird and mercurial that way, and definitely better--as you say!!!--when it's all squozed in.


I've worried about getting it in the trunk because it seems like it'd be so hard to treat there. What do you do for it in the groin and stomach? I had it go into my lower belly once after being on the professional leg pump at too high a pressure. Fortunately it went away though and I haven't had any reoccurrence. 



liz (di-va) said:


> I don't know about y'all, but I suffer from a huge amount of pain when it's bad in these areas. Walking is so miserable...


Yes, when the swelling is bad, the only thing that really feels comfortable to me is lying down with my feet up. I was miserable in Vegas because the drive down without compression on my legs had made them swell so much. I also get sudden twinges of the nerve pain Tina mentioned. Now that my legs are going down though (I'm in the process of getting wrapped again) it's much more comfortable. Walking around is much easier too. Just the pressure from the compression garment feels good. Summer will probably be miserable, but right now with the current chilly weather they feel really good--like wearing a cozy pair of (black) tights.



Tina said:


> It's just remarkable how inept these companies. They really need someone to give them a run for their money. Between the pricing and the ineptitude, I've often thought that if I had the dosh I'd like to start my own line of compression garments. You know, something SANE.


Oh, amen. This industry is just ripe for someone to come along and make improvements. All along I've been stunned at just how unwilling, or maybe unable, the PTs have seemed to be at thinking outside the box to come up with solutions. What's really needed, in my opinion, is a simple way to get the equivalent of a bandage leg wrap at home, and in a way that doesn't require a second person to wrap you. I have a couple of ideas I may try to create just to use myself.


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## Tina

I'm so glad you have them, Rainy. It's just a terrible, terrible feeling to feel your legs filling out of control, and then of course, the discomfort and pain.

You know, were it not for Leslyn, I wouldn't have what I wanted, either. She is a remarkable advocate, very intelligent, and actually listens to her patients, feeling that we know our bodies best. Wish I could bottle her and send her out to everyone with lymphema who feels they aren't getting proper care or being listened to.


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## liz (di-va)

Question: are y'all good about doing massage faithfully? Self-massage, I mean. I am curious 



rainyday said:


> I've worried about getting it in the trunk because it seems like it'd be so hard to treat there. What do you do for it in the groin and stomach? I had it go into my lower belly once after being on the professional leg pump at too high a pressure. Fortunately it went away though and I haven't had any reoccurrence.



BIcycle shorts....boy shorts....girdles...compresssiony things. Layers, sometimes. 



> Oh, amen. This industry is just ripe for someone to come along and make improvements. All along I've been stunned at just how unwilling, or maybe unable, the PTs have seemed to be at thinking outside the box to come up with solutions. What's really needed, in my opinion, is a simple way to get the equivalent of a bandage leg wrap at home, and in a way that doesn't require a second person to wrap you. I have a couple of ideas I may try to create just to use myself.



I'd support that! I used to talk about ideas with my PTs but my chemical knowledge wasn't ever enough to get off the ground .


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## moore2me

I do not have lymphedema, but I was doing some research for a person on the subject and ran across this website http://www.lymphedema.com/about.htm

They advertise bandages for lymphedema that can be applied by one person (the patient) and have several styles available. Maybe some of you guys could take a look at what they offer and tell me what you think - I also noticed they have several locations and accept insurance. Thanks in advance for checking. Moore2me.


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## rainyday

moore2me said:


> Maybe some of you guys could take a look at what they offer and tell me what you think - I also noticed they have several locations and accept insurance. Thanks in advance for checking. Moore2me.



Moore, I'm not familiar with the Reid Sleeves shown at that site, but I did look at sleeves from a couple of other brands--CircAid and MedAssist--in person today.

It seemed to me that the MedAssist sleeve would be easier to use on a fat leg than a CircAid sleeve would, mostly because it looks like you can cinch it up with one hand rather than two. I think that would especially be true if the person has a large belly. Looks like the Reid Sleeves at the site you linked cinch up in a similar one-handed way. I just found out my insurance will pay for this kind of device, so I'm probably going to get a MedAssist sleeve just to wear at night. Once I have it in a few weeks I can give you more input.

Here's a link that shows you both of the brands I'm talking about:
http://www.unitedmedical.biz/products.php


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## Shosh

I am so glad that I found this thread. Christal told me that she has lymphedema, and I wanted to know what it was so that I could better understand it. I wish i could help her in some way, but I am so far away in Australia.


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## BigBeautifulMe

Bumping this thread because I was just diagnosed. Liz, Rainy, Tina, everyone else - thank you so much for sharing all this wonderful information. I just spent a few hours reading this thread and looking through the linked websites - T, that woman's blog you posted with pictures of her stage 3 lymphedema looks EXACTLY like me.  Well, at least now that I know what's going on, I can treat it - and I have a lot more hope now, because I understand a lot more of what that treatment is going to be like, thanks to you guys.  *Hugs for all of you*


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## Shosh

BigBeautifulMe said:


> Bumping this thread because I was just diagnosed. Liz, Rainy, Tina, everyone else - thank you so much for sharing all this wonderful information. I just spent a few hours reading this thread and looking through the linked websites - T, that woman's blog you posted with pictures of her stage 3 lymphedema looks EXACTLY like me.  Well, at least now that I know what's going on, I can treat it - and I have a lot more hope now, because I understand a lot more of what that treatment is going to be like, thanks to you guys.  *Hugs for all of you*



Sorry to hear this sweetie. My best wishes to you.


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## ChubbyBubbles

BigBeautifulMe said:


> Bumping this thread because I was just diagnosed. Liz, Rainy, Tina, everyone else - thank you so much for sharing all this wonderful information. I just spent a few hours reading this thread and looking through the linked websites - T, that woman's blog you posted with pictures of her stage 3 lymphedema looks EXACTLY like me.  Well, at least now that I know what's going on, I can treat it - and I have a lot more hope now, because I understand a lot more of what that treatment is going to be like, thanks to you guys.  *Hugs for all of you*



I'm so sorry hun! I, too, have stage 3 lymphedema. When I was 1st diagnosed I thought it was the end of the world. I thought that I was a freak and that my life would never be the same. It took me a while to get used to it...especially the therapy, wraps & stockings...but 4 years later it's as normal to me as breathing. Sure I still have my days of wishing I had legs "just like everyone else". And the summer's are a bitch for me with the increased swelling and having to wear those damn compression stockings, (talk about being HOT!!) but I look at it this way...at least I can walk, get around and move. Good luck to you, my friend. If there is anything you need or that I can help you with, please let me know. *HUGS*


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## ChubbyBubbles

Susannah said:


> I am so glad that I found this thread. Christal told me that she has lymphedema, and I wanted to know what it was so that I could better understand it. I wish i could help her in some way, but I am so far away in Australia.



Sweetie, you help me everyday with your words of encouragement and just for being my friend. I love ya Susannah! Thank you!


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