# Fibromyalgia



## saucywench (Jun 7, 2008)

Ow. Ow ow ow.

I'm not even sure why I'm starting this thread, maybe only to commiserate with others (like Tina) who share this ailment, or to help others who are suffering who have yet to be diagnosed. I did a search on the term on this forum and didn't see a specific thread on it, although there were a few references to it in other threads.

I am having a fibromyalgia flareup, and it's very painful. Very. I guess I haven't shared much about this problem because, although I was diagnosed 12 years ago, I was able to get it under control fairly quickly. The flareups since then have been relatively mild, up until now.

I "caught" fibromyalgia suddenly. The date was November 6, 1996. Why do I remember the date so specifically? It was the day after Bill Clinton's 2nd presidential win. The night before, I had wandered downtown alone to take in the election festivities. I listened to Tony Bennett and Nicolette Larson (R.I.P.) sing at the amphitheater, then stood in the middle of the street in front of the Old State House while Clinton gave his victory speech. Around 11pm I made it back home and crawled into bed. The following morning I could barely crawl _out_ of bed.

The weeks that followed were absolute misery. At the time I was trying to wrap up my degree requirements and had rearranged my work schedule in order to take an afternoon class. As day after day of constant aching and flu-like symptoms wore on, I found myself leaving work and heading home and to bed instead of class. I didn't know what was wrong with me and I was frightened by the unknown. Eventually I saw my PCP, who then referred me to a rheumatologist, who made the diagnosis. She set me up on a regimen of Naprosyn 3 times daily, Flexeril to be taken in the early evening prior to bedtime, and Tylenol 3 PRN. After a few weeks of that I noticed my symptoms were alleviated, and I began cutting back on the Naprosyn, eventually taking it just once daily, and was taking both the Flexeril and Tylenol 3 PRN. I continued with the Naprosyn until I developed an allergic reaction, then took Vioxx effectively until that was taken off the market. I then took OTC Alleve until I began to worry about it, and up until recently was simply taking good old-fashioned aspirin PRN. 

It's hard to say exactly when the fibromyalgia kicked in again. I had surgery for a herniated disk (L5, S1 laminectomy/discectomy) back in 1990 and have recently had facet joint inflammation in that area. This has caused me to have to take the Tylenol 3 on a daily basis for at least the past 3 weeks. I have only been aware of the fibromyalgia symptoms along with this for the past week but, with the all-over body aches and pains, there is no mistaking that I am suffering from a fibro flare-up in addition to the lower back inflammation. I had gone to my PCP about the lower back pain. An x-ray at that time revealed the inflammation and further review by a radiologist revealed some L1 compression. This was followed up by a bone density scan this week for possible osteoporosis, but results showed no signs of that (the visit did, however, upon pre-scan measurement, reveal that I have lost TWO inches in height.)

I have been up for three hours now. I go to bed in pain and wake up in pain. I took a Tylenol 3 about an hour ago and have felt little relief from it. After the initial diagnosis 12 years ago, after I had gotten it under control, it was often difficult for me to recognize a fibro flare-up, as far as distinguishing it from general aches and pains. I would often overdo things as far as chores and stuff, doing too much when I had a lot of energy, which would often be followed by achiness for 2-3 days or longerbut, with some rest and self-care, I would usually rebound back to normal from that. This time is different, though, in that the all-over achiness I feel puts me back 12 years ago to when I first felt like this. Its very disconcerting to have this feeling of helplessness about ones body, especially when the aches and pains become chronic.


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## Risible (Jun 7, 2008)

I don't have the fibromyalgia, Saucy, but I do have OA, end stage in the knees. It's difficult to get sleep some nights because of pain in the knees; I toss and turn, trying to get relief from that pain. So I can empathize with you.

Like you, I can remember the date and the place of my first flare-up, which also lasted for weeks before I could get it under control. I work now on keeping it under control, while keeping the NSAIDs to a minimum.

I'm sorry, Saucy, to hear of your pain; I hope this episode passes quickly.


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## kathynoon (Jun 7, 2008)

I have fibromyalgia. I see no pattern to when it will flare-up. The worst is when it gets to my neck and makes it painful for me to hold my head up. When I was diagnosed, I was nto given any medicine. I was told to come back if I ever felt it was needed. I avoid medicine like the plaque, so I have never gone back. So far I have been able to tough it out.


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## mariac1966 (Jun 7, 2008)

I certainly can sympathize with you, Saucy. I, too, have fibromyalgia, as well as severe osteoarthritis in every joint in my body. I was diagnosed many years ago with the fibromyalgia. I do find that when I am stressed or over-due my activities, the fibro is much worse. But I can have a flare-up at anytime, and for no specific reason. 

From my research on Fibro, it is based on a serotonin imbalance and find that SSRIs (Selective serotonin reuptake inhibitors) are helpful in alleviating some of the pain. I also take Lyrica, which helps with the muscle pain and the restless feeling that inhibits them at times. Muscle relaxers did not help me at all. I cannot take any NSAIDs because I had a stomach bleed, so I am limited to Tylenol or Tylenol 3 PRN. 

Here are a few websites with information that I hope you can find useful. 

http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp
http://www.fmaware.org
http://www.rheumatology.org/public/factsheets/fibromya_new.asp

I hope you get this recent flare-up under control soon. I know being in pain constantly is no fun and can be, at times, depressing.


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## Tina (Jun 8, 2008)

(((((((Cin))))))) I'm so sorry you're having another flare-up. I do understand how broadly it can affect one's life. I've been having an almost continuous flare-up for months of the fibro and CF, and it's hard to say what's causing mine, too. I know I would help myself by getting my inflammitory issues better under control, and I'm going to work on that, by increasing my magnesium intake. Supposedly, this stuff is supposed to be the best. I'm trying to figure out how to swing, but I'd like to. I know there's more I could do, including exercise, which does help both CF and fibro, but as you know, it's so hard to get started when you're so profoundly sore and tired.

My son used to talk semi-jokingly about inventing me a zero gravity suit so it would be easier and less painful for me to get around, bless his heart.


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## saucywench (Jun 8, 2008)

((((((((Tina)))))))), and thank you to everyone else who has responded.

I have been up for about 45 minutes [OK, make that over two hours since starting this post.] My fingers hurt just to type this, but I hate to just sit (or lie down) and just do nothing.

I think I may have mentioned that I took a Tylenol 3 yesterday morning after I had been awake and up for a little bit. I got very little relieft from that. After I had been up for about 5 hours I got a hot bath, which helped just a little bit. I knew I needed to take care of myself, which meant I was going to be pretty much useless for the day, so I grabbed a book to read and stayed in bed mostly all day. I drug out my heating pad from under the bed and plugged it in and laid (?) on that the rest of the afternoon and through my sleep last night. The only constructive things I did yesterday were that I mopped part of my kitchen floor and managed to make some lunch and dinner. Doing even simple things feels like such a monumental effort.

By evening I felt worse instead of better. Although I had ached all over, my legs were feeling more and more stiff, as though I was turning to stone. My mother had cautioned me about taking too much medication, but--hello? I am always reluctant to take pain medication, but that's what it's _for_. I have been in pain daily for about three weeks now, so, yes, I'm taking pain medicine daily. Anyway, as I had already had one Tylenol 3 yesterday, I decided to mix things up a bit, so I took two 325mg Bayer aspirin and a Flexeril before bed--and woke up feeling essentially the same as I did yesterday. There may be some mild improvement, but hardly enough to be measurable.

What's really aggravating about having a flare-up at this time is that I am moving my mother in with me, and we hope to have this done by July 1. Painters began work on the exterior of my house on May 29 and they just wrapped up last weekend. I'm sure that painting my front porch (floor) myself last Saturday didn't help, in fact, it probably contributed largely to this flare-up. But there is _sooo _much to do--my mother and I are both packrats and we have a lot of crud to sift through and dispose of before we meld two lives together. Physical space is at a premium in my small house and I'm trying to come up with creative storage solutions. This front room that will become her bedroom needs to be painted...she has already picked out the color, and the paint is sitting here waiting to be slapped on. 

I have arranged to have all of next week off and here I sit, unable to do..._anything_. My sister called last night and said that she would be over this week to help, and I just wanted to cry. I had planned to do most of this myself and hate feeling that someone has to come in and "rescue" me simply because I am unable to. I hate this feeling of helplessness. I only hope that I can recover enough, by resting again yet one more day, to begin to tackle some of the things that await me.

Maria, thank you for the links, and Tina, thank you for the link you provided about magnesium--I will look into that. I have a folder of information about fibro that I've collected over the years--things from online, from magazines and journals, brochures from doctors' offices--but I haven't looked at them recently because I have not had a bad flare-up until now. And Tina, you are so right about the exercise--I would gladly do such things that would help, if only it weren't so painful to simply _move _right now.

You know, what I think would be beneficial for those of us who suffer from inflammatory diseases--heck, anyone in general who reaches a certain age or state where our health is greatly impacted--is to keep a daily journal. I keep telling myself I will do that, yet put it off. But I think it would be helpful to us, and our healthcare practitioners, to have a log of what we do physically, what we eat, our environmental factors, what we do to combat physical suffering, how effective that is in our self-treatment...things of that nature. Despite all that is known about medicine and science, there is still so much more out there yet to be discovered.


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## Miss Vickie (Jun 8, 2008)

((((((((((Saucy))))))))))

Oh, how I can relate. I don't have Fibro but I do have Sarcoidosis, and my flare ups always seem to happen at the worst times. I hate, more than anything, just sitting there unable to do ANYTHING. It makes me nuts. So yeah, I feel your pain. I'm so sorry you're going through this. 

What helps my pain, more than T3's (although Ultram worked fairly well for me), is anti-inflammatories. I loved Vioxx while it lasted, but even Motrin was a Godsend. Forgive me if I missed this, but are you still taking anti-inflammatories regularly? And remember, if one doesn't work, try another. We're all built differently and while for some Naprosen, as an example, is great for others (like me) it does diddly. And Acetaminophen has never worked for my pain. I'm definitely a Motrin kind of gal. Keep trying until you find something that works for you. Also, with narcotics like codeine, we can build up a tolerance quickly so it doesn't surprise me that the T3's aren't cutting it. It may be time to try something else.

Poor duckie.  I hope you're able to get yourself out of this cycle quickly.


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## saucywench (Jun 8, 2008)

((((((( Vickie ))))))))

I knew that you had _something_, but couldn't at the time of my post remember exactly what it was.

I am trying to remember what I have used to help. After I developed the allergic reaction to the Naprosyn (I broke out in hives literally from head to toe, even my face and lips were swollen), my doc put me on some old-school stuff (Voltaren, maybe?) Well, half an hour after taking the first one of those, I proceeded to puke my guts out all day long. It may have been only a coincidence, but the violent wretching made me not want to chance going through that again, so I never took it again. I know I've taken Motrin in the past, but I think, when I tried it again, I developed an allergy to it, also. Vioxx did work quite well for me, for a long time (ooh, the danger of that, I think I took it daily for 3-4 years or so), and then I just decided to skip the expense of the prescription drugs and went to Alleve. I took that for quite a while until I became worried about the risks of that. It was then that I resorted to good ol' aspirin (Bayer and Excedrin, usually--whatever I have a coupon for). Acetominaphen has never been very effective with me, so it must be the codeine in the T3 that helps me so much. I guess the aspirin works OK, but surely not as well as the NSAIDS did. I may try ibuprofen one more time...if I only knew how long I could take it before I developed a toxicity to it, I could switch to something else before that happened. Maybe I could try a 3-months-on, 3-months-off rotation or something.

I am feeling physically better this afternoon, after a hot bath and a T3. I wasn't expecting to, though, but I got up and around because my sister had said she was coming over to bring me anything I needed, and I didn't really want that. While I do love my sister, she has become increasingly negative over the years, to the point that she is often unpleasant to be around or listen to. Although there is so much to be done in preparation to move our mother in with me, I didn't really (until my sister's intervention) feel any undue stress about it all. But she had decided that she and our aunt would come over this week while I am off and "help"--I don't need that kind of help, as it will only make things worse. I just hung up on her because she was ranting incessantly. And now I am worried in ways that I wasn't before. I don't need any poison in my life.


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## mariac1966 (Jun 8, 2008)

Whenever you are taking NSAIDs, make sure that you eat with them. If you don't eat, they will burn the lining of your stomach and cause a stomach bleed.


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