Are Fibromyalgia Wars & Rheumatoid Arthritis Related? | Rheumatoid Arthritis Warrior

Are Fibromyalgia Wars & Rheumatoid Arthritis Related?

This past weekend, I spent several hours catching up on what’s called the “Fibromyalgia Wars.” Many Rheumatoid Arthritis patients do state that they have been diagnosed with fibromyalgia. This is the first post on Rheumatoid Arthritis Warrior on the topic of fibromyalgia. Deep breath. 

What are Fibromyalgia Wars?

There is argument from a number of doctors and researchers that the term fibromyalgia is not a helpful label for a grouping of symptoms which usually includes “widespread pain, fatigue, sleep disturbance, depressive symptoms, cognitive problems, irritable bowel syndrome, multiple somatic symptoms, and a single partially objective sign — tenderness on palpation” according to an article called Fibromyalgia Wars by Fred Wolfe, MD. Dr. Wolfe does not argue that the symptoms do not exist, but that there is still no proof of a single cause for what is now referred to as fibromyalgia syndrome (FMS). [If you have trouble opening the last link, click here and scroll to bottom to "References.” Then click "FULL Free Text” on number 2.]

If you are wondering how FMS came to be called that or treated in the way it is today, I recommend you read the article. Note the warning at the bottom of the page: “The content of this site is intended for health care professionals”. That never scared me away – remember what I said about keeping patients at the back of the information bus? However, the article was written for and by doctors, so the discussion may be a bit uncomfortable to patients.

If you get through the detailed recent history in Fibromyalgia Wars, there are several other articles referenced and footnoted in that article. There is also a criticism of Fibromyalgia Wars called War Is Over. Give Peace a Chance (with apologies to the late John Lennon) by M. Harth and W. Nielson. Dr. Wolfe has replied with Fibromyalgia Wars – II Dr. Wolfe Replies.

Also interesting is Fibromyalgia and the Fallacy of Pain from Nowhere by J. Sarkozi. Dr. Sarkozi has some theories about what origins of FMS symptoms may be and how they may be better treated by rheumatologists. So far, treatment results for FMS have been miserable. Dr. Sarkozi has a recent book called The Missing Pieces of the Fibromyalgia Puzzle. I will report back to you after I have read it.

Rheumatoid Arthritis patients and fibromyalgia

Observing Rheumatoid Arthritis materials the last couple of years, I’ve noticed quite a few doctors who do not sound like they believe that fibromyalgia is a disease. Technically, FMS is a “syndrome” – a word to describe a collection of symptoms. It is generally treated as a diagnosis of exclusion which means that if a doctor cannot find any other explanation for a group of symptoms, then he may label them in this way.  Even doctors who do not believe it is a justifiable diagnosis will use it. Remember the example of the notorious Dr. Dorothy Sherwood in the video on the post called E-patient’s Role in Healthcare Social Media: Do Doctors Hate Blogs?

Maybe she misunderstood Dr. Wolfe’s fibromyalgia perspective – or maybe I do. He wrote, “…sometimes patients ask the physician, ‘Do I have fibromyalgia?’ The answer might be, ‘Some doctors call your problems FM. FM is the name we give to such problems, not the cause of the problems.’”  I didn’t think he meant that doctors ought to just humor patients by diagnosing FMS. It sounds like Dr. Wolfe advises that the issue is not whether the symptoms exist, but how we label them. How should we study and treat them?

One of the most surprising things to me was that so far in my reading the Fibromyalgia Wars, there was little or no mention of Rheumatoid Arthritis. I have met quite a few Rheumatoid Arthritis patients who were initially diagnosed with fibromyalgia before it was established they had RA. I have also met many RA patients who are diagnosed with FMS when the use of disease modifying drugs (DMARDs) helped put their lab work into remission, but not all of their symptoms. Rheumatologists who see inflammation markers as the only evidence of active Rheumatoid Arthritis are frustrated by patients who continue to complain that RA symptoms are uncontrolled when their ESR or CRP or Rf or whatever favorite level is within a normal range.

What is your experience with Rheumatoid Arthritis and Fibromyalgia?

Some of the most surprising things about RA and FMS that I’ve heard are the different comments rheumatologists make to RA patients about fibromyalgia. These are real examples: “Your RA inflammation shows remission, so this must be fibro”; “Has your Biologic helped your fibro?”; “The only way to treat the fibro is with prednisone.”

What is your experience? If a rheumatology specialist has ever commented to you that you have FMS, was that before or after an RA diagnosis? Did he/she prescribe something to treat FMS? What did you think about it?

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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118 thoughts on “Are Fibromyalgia Wars & Rheumatoid Arthritis Related?

  • April 26, 2010 at 7:48 am
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    My doctor feels my RA is still uncontrolled based upon my symptoms of ongoing pain, and swelling, fatigue , and ongoing lowgrade fevers; despite normal or near normal inflammatory markers. And I was under the impression the fibro is not treated with biologics or prednisone. It’s not autoimmune so why would docs treat it with that class of drugs?

    Reply
  • April 26, 2010 at 7:57 am
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    I was dx with RA first. Two years later, I was in the worse flare up of my life. Went to the rheummy and of course my blood work is under control. So he dx me with FMS. He said all patients with RA will get FMS they conciede with each other. Now I have tried the FMS drugs. They do not work for me. But I am still told my RA is under control, it is all the FMS. Well, I believe the FM dosn’t affect my toes, knees, hips and fingers. But all of those joints are very painful, but it is still dx as FMS…..

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    • April 27, 2010 at 5:33 pm
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      Thanks for the input. It helps others to compare. And I agree with you by the way.

      Reply
    • June 16, 2011 at 12:03 pm
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      FM/CFS cannot really be diagnosed. If I may add those with similar symptoms ( it seems to effect diff. people in diff. ways and at diff. times) as well as flare ups. It does effect
      all parts of the body.

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    • June 16, 2011 at 12:14 pm
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      When you say tried FMS drugs, I would be interested in what drugs you were given that would be known as FMS drugs? I have never really heard of specific FMS drugs. Thank you.

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  • April 26, 2010 at 8:25 am
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    “Your RA inflammation shows remission, so this must be fibro” – this is almost exactly what was said to me a week ago at my last rheumy appointment. I’m getting very frustrated with my rheumy. At a previous appointment, I told her that the Effexor I was prescribed has really helped my fibro and I can now tell the difference between RA pain and Fibro pain. She said that was great, and that if I got the okay from the infectious diseases doctor, I could start Actemra since I can’t take TNF-blockers anymore. Then last week, I told her I got the okay and she said “Well all of your inflammation markers are okay, it looks like your RA is under control, so I’m not going to put you on Actemra right now. I think the pain you’re still experiencing is from Fibro.” WHAT??? So what was the point of spending half a day the week before that at the other doctor’s office? She knows that I rarely swell and my blood work has always been normal, so why the change in treatment plan? I’m home from work today because every joint hurts so badly I can’t walk. But my RA is under control?

    Sorry for going on, but, as usual, this post struck a chord with me.

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    • April 27, 2010 at 5:38 pm
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      Dear Aubrey, as you know, I’ve been keeping up with your story through FB, etc. Thank you for putting it down here for others to see and compare as they try to solve this puzzle too. So, what will you do now? A 2nd opinion?

      Reply
      • April 29, 2010 at 10:22 pm
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        I’m sorry I’m just getting back to this Kelly. I do want to find another rheumy, but, for various reasons I’m putting it off for a little while until some big decisions are made in our family. Either way, I hope to have a new one by the end of the summer.

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  • April 26, 2010 at 8:57 am
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    I have had RA for about 5 years and was recently told I have a bit of FMS by my rheumy. She changed my Effexor to Cymbalta because it might help with pain. I just figure I’m going to live with pain the rest of my life, no matter what they call it.

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    • April 27, 2010 at 5:39 pm
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      hi Sue. I really hope you don’t. Lots of people do get remissions. I’m still hoping for one for you and for me.:-)

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  • April 26, 2010 at 9:19 am
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    My Rheumy clearly believes that fibromyalgia is real; in fact, I’m taking Gapapentin to calm down my nerve impulses now–it’s not RA that’s the problem now. The Rhuemy says that patients who experience remission based on all their clinical measurements still feel achy and crap a lot of the time. Honestly, steriods can’t fix this problem–but Gapapentin has worked for me.

    My mother-in-law takes low-dose Amytriptilne for her fibromyalgia and it’s working very well.

    Clearly, fibromyalgia is another disease process in addition to RA.

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  • April 26, 2010 at 9:38 am
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    A few years back I picked up a magazine. On the cover it stated one of the articles was “How can I have a disease I don’t even believe in”. I knew without looking it had to be about Fibro.

    In 1993 I suffered a horrid flare. I ended quitting work, and leaving Phoenix after 15 years to return to the flatlands of the north. A good local Rheum Doc hit on all 18 tender points, my overwhelming fatigue and diagnosed Fibro. However I believe had he gone after almost any point on my body, other than the standard 18, he would have gotten the same response. Another local doc then put me on a different NAISD (keprofen) and Effexor, an antidepressant. Within 3 months I was off disability and back to work.

    A couple years later I went through the Mayo Fibro clinic and had exactly one tender point. Although I felt as sick as I did before.

    In my opinion only there is a strong connection, as in my case, between mind and body. I think we with RA are under more constant pressure than the brain and body can take. I feel the same way about my CFS, diagnosed at Mayo. I don’t even talk about these syndromes really anymore, with my new doc., I don’t need “the look”, it just gives me more stress.

    I have empathy for those with a single diagnosis of Fibro or CFS, you can drive yourself nuts looking for answers. I did the Lyrica and Cymbalta thing, no luck, wierd, nasty side effects.

    An old doc who used to do my trigger point injections, may he RIP, explained that when you have a certain collection of symptoms in a certain number of patients it’s lumped into a syndrome. It doesn’t mean there’s any real treatment for it. It’s just another humongous pain in the butt. Once again I’m speaking for me only and mean no offense to those who struggle with syndromes that leave us so wide open to quackery and the whims of Big Pharma.

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  • April 26, 2010 at 9:43 am
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    I have RA and FM, on Cimzia for RA and Lyrica for the FM. I think both medications have helped to some extent, there are times when nothing helps, as you know. My CRP and ESR are never “normal”, always too high but I guess that will always be. I also take 5mg. prednisone daily, plaquenil 3oomg, 3x daily, Cymbalta & Xanaflex. So I feel like I should rattle when I walk but the combination seems to be working, so there! It did take 4 years after the diagnosis of FM to get the diagnosis of RA, and survival is tough at times. Try not to take too much acteaminophen, cause it is tough on your liver and the medications they eventually give you for your RA are also tough on your liver, and you want it to be healthy for them!!! Mine wasn’t, so I got started on Enbrel and then got an irritated liver and that is the sickest sick you can get!! 🙁 Hope this information helps someone during their tough journey through RA & FM. jane

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  • April 26, 2010 at 9:43 am
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    I agree RA and FM are two seperate diseases, but do usually go hand in hand. I think what the problem is—is that they don’t know where the FM begins and ends and where the RA begins and ends. I had to fight tooth and nail with my dr. nothing was helping the pain of RA. I kept after him till he finally listened to me!! Now I have been taking Lyrica for over a year now. It helps to an extent to where I am able to routine chores around the house. I still get very fatigued, especially if I vary from my daily routine. I am doing better and I take it one day at a time. Enbrel so far has helped the best with the RA. I do still take Prednisone for quite a few years now, can’t get off them but at least its the maintenance dose of 10 mgs. I also do Vicodin, can’t skip them either. My feet, toes, hands, wrists, knees are the worst. Hips bother me too, but only when stepping on or off a curb, sleeping too long on one side. Things like that. The fatigue is a major issue with me. I do believe I have developed nerve damage on the bottom of my feet. Thanks for listening!! Anyone from RI????

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    • June 16, 2011 at 12:34 pm
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      I must agree. All through the pain can be unbearable at times. I find the fatigue is constant and the most debilitating. I am sorry I don’t know if RA causes severe fatigue and brain fog. I must do more research but can barely finish this.

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  • April 26, 2010 at 9:51 am
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    Note: keprofen = Ketoprofen. Too early, not enough coffee and brain fogged to the max. Oh, happy day 😛

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  • April 26, 2010 at 10:10 am
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    Back in 1992, I was diagnosed by the head Rheumatologist at Lahey Clinic in Boston area with Fibro. When I moved to Florida, I had to find a Rheumatologist here in Florida, and he confirmed Fibro…but always tested me for lupus and RA. He treated me for years as fibro with muscle relaxers and Malic Acid, and some other things we would try, but don’t remember. He had always suspected though that I would end up with RA or Lupus. He once told me that if I took the prednisone and I felt better than it was more than likely RA, if Fibro it would not really help it. I saw him for about 5 years and then i started feeling better, was in sort of a remission for years until a year ago when I went back because of severe joint pain, tested positive for RA, found erosion in xray. Just like he predicted years ago. But not much he could do about it back then because I mainly had muscle aches and pain and not as much joint pain. Now it’s bad joint pain, as we all have. Oh well, I guess was destined for RA…I would rather be destined for greatness. LOL

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  • April 26, 2010 at 10:11 am
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    Sheila: I’m like you in that the fatigue has never gone away, it started in 1971 with the RA onset. I’m also on Prednisone, narcs, Humira and Arava and NSAIDS. It’s a disgusting combination just to kind of stay on my feet. Especially with very serious Osteoporosis. The only drugs that kicked the fatigue were Prozac and Effexor. Yes, I’m aware there’s a level of fatigue in depression, but that can’t all be it. Unfortunately neither of these drugs work anymore. I shopped for groceries the other day and had the store deliver them. Result? Spent 2 days in bed, exhausted beyond reason.

    I have a question for you or anyone. *Do any of you have serious allergies?* I have cat and ragweed allergies++. When the ragweed starts here I might as well be comatose. When I got rid of my last cat, a heartbreaking decision, I got rid of constant sinus infections, 20 years worth. But allergy season provokes muscle pain unlike any other I’ve had, the kind that makes you lie down and bawl like a baby. I think the last allergy season in Phoenix, a horrible one, is what kicked off Fibro type symptoms. Of course this could also be my over thinking it to death, searching for causes and answers I may never find. I ran as fast as I could from my RA, but it finally caught me.

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  • April 26, 2010 at 10:35 am
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    I was diagnosed with FM before the RA back in 1987. Back then it seemed to be new phenomena. Two years later the doc diagnosed RA and apologized saying it was probably RA all along. I am seronegative but have an SLE marker that manifests as RA. I take a low dose antidepressant at night to regulate sleep and that has taken care of the FM for the most part. In all the years I have had these 2 diseases my doc has never thought they were anything but 2 distinct and separate conditions and he treats them as such.

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    • April 27, 2010 at 5:44 pm
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      Mary, thanks for sharing that info. It is helpful to the discussion.

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  • April 26, 2010 at 11:41 am
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    This is a very pertinent issue, b/c God knows I have been up and down and all around this issue.

    I was both diagnosed with FMS before I had RA, and after RA swelling was put in remission with biologics, but my pain levels did not remit.

    However, I am proud to say that I think I have made even my rheumatologist, a firm believer in the existence of FMS question its presence. She has tried several times to give me the FMS diagnosis, and each time she admits that she isn’t buying it with me. She will not say exactly why, but I think it has something to do with the fact that I show no depressive nor any cognitive symptoms. And in the beginning, I was the one not choosing to accept the diagnosis. I would state, “I don’t believe in FMS. I believe the symptoms are real, but I believe it is a term drs. give patients b/c they can’t figure out what is wrong.”

    I notice she didn’t argue with me there.

    (And btw, she was not the one who tried sticking me with the FMS diagnosis in the beginning, it was a male doc. I moved on from him and got diagnosed by two different docs as having RA.)

    But I have noted several times that when RA sufferers complain about too much pain, even after the swelling has decreased significantly, drs. will scratch their heads and come up with the “It must be FMS.”

    I think most people are just happy to have someone put a label to their symtpoms.

    Not me. I know I don’t fit the bill for FMS, and I KNOW my pain is joint pain, not muscular. The times when my muscles do hurt is only during a very bad flare when it is radiating pain. And if you look at the list of symptoms for RA, muscle pain is listed.

    So as I said, I’m proud to know I have caused my doc to look at RA and decreased swelling in a new way.

    I will read these articles, Kelly. Thank you.

    – RA SB

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  • April 26, 2010 at 11:46 am
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    P.S. I had thought that docs were starting to understand that the biologics only reduce certain symptoms in many patients, but do not stop the pain, nor even all of the disease progresion b/c I don’t know about everyone else, but my joints show signs of deformation even as no swelling is present, as do my x-rays.

    But after reading these comments, I see that many docs still think that biologics solve everything and we just have FMS on top of RA.

    When will the medical community learn to listen to us?

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  • April 26, 2010 at 12:08 pm
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    When I was first diagnosed with RA, I asked my rheumy about FMS and he said that he didn’t believe it was a real disease, so I didn’t ask again. Fast forward four years to me and a new doctor. The new doctor checks for FMS, says I only fit 9 out of 18 tender points (but some of the points he pressed I am completely numb in those areas). He won’t “label” me with FMS, but will treat me as if I have it. I’ll be seeing him again tomorrow to discuss it further.

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    • June 16, 2011 at 12:47 pm
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      I am sorry but sometimes those 11or 18 points just make me upset as being part of some kind of dx. All though those points might be tender. You can poke me in 100 ( symbolic – maybe) and they would be tender.

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  • April 26, 2010 at 12:29 pm
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    My naturopath steered me away from an FMS diagnosis. I had all of the symptoms, was borderline on the tender point test with additional points not on the test, and we were heading toward FMS as a diagnosis. He said something didn’t feel right and sent me to a different rheumatologist (I’d been monitored by a rheumy for a couple of years due to an elevated rheumatoid factor, but she would never make a diagnosis). The new rheumy (Dr. M) ruled out fibro and diagnosed me with RA and/or psoriatic arthritis.

    Dr M says the fact that a steroid injection (systemic) completely cleared my symptoms confirmed it’s not FMS. He believes FMS doesn’t respond to steroids. He also said that whichever kind of arthritis I have, it can account for the muscle pain and fatigue. Both have been helped by the methotrexate. Still having some issues, primarily with joint pain, so they are adjusting my dose and maybe adding Enbrel or Humira.

    Interesting to hear other’s experiences with docs being overly invested in inflammatory markers. Mine have always been normal, but Dr. M says that’s often the case with psoriatic arthritis. So thankfully, I haven’t had to fight that battle.

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    • April 27, 2010 at 5:49 pm
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      Thank you for that input, Kris. Sounds like you have a good doc.

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  • April 26, 2010 at 7:42 pm
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    Over the winter my dr became frustrated with my AS symptoms and said it’s almost like I have Fibro. I think that he said it out of frustration. All of my symptoms are related to my AS though. I think the frustration came because he could not get the symptoms under control. I think that it is important no matter what diagnosis we have, always get a second opinion. Also research, learn and understand what the diagnosis is and means. KNOWLEDGE IS POWER 🙂

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  • April 26, 2010 at 9:38 pm
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    What I have learned is to never ever say the words Fybromyalgia if I’m in an ER. I was once taken by ambulance for what later turned out to be life threatening tachycardia and was stupid enough to utter the words FM. Of course with tachycardia, the attack usually only lasted a few minutes before my heart normalized and the docs in the ER just told me I had an anxiety attack and sent me home. Just once I got lucky and got a great Cardio guy who did the appropriate test (2 week monitor) and arranged for heart ablation. I have learned my lesson. It has been said by my Rheumi that it is the disease du jour and is sometimes used to get out of working and onto disability…ciao

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  • April 27, 2010 at 12:39 am
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    I was just told it appears I have Fibromyalgia. I was told that because there was no swelling present (esp. in some of the places that I was complaining about: knees, elbows, hips and neck), I apparently have several of the “pressure points” of Fibromyalgia, and even though my RF count is elevated the more “important” test for RA remains negative, it appears I have Fibro. Now mind you I have been on Prednisone since Nov 09 and Naproxen, Mtx, and Folic Acid since Jan of this year. Maybe that’s why the inflammation was not showing itself? I was all together frustrated when he presented me w/this potential diagnosis because it really takes a lot to swallow the diagnosis of RA and now what? I don’t have RA now (why am I taking these horrible meds??)? I have Fibro? I have both? What do I have? Well he’s not “selling the farm” (his words, not mine) on either. What??? I am now still on Mtx, dropped the Naproxen due to it making me ILL and he halfed my Prednisone. Guess what? Inflammation is coming back… I’ve adopted a new attitude however, it is what it is and will eventually show itself. I think. I’m going to go with the wait-n-see and see what happens at my next appt. I do think I probably have both. The info he gave me to read does sound a lot like me but I don’t believe Fibro covers my hand and feet issues or the fact that I got Pericardial Effusion and Pleural Effusion w/a collapsed lung last Nov which started this whole roller coaster ride. Unfortunately I do think that there is still RA present. Well, unless it’s really bad Osteoarthritis cuz he did tell me I have that as well – in the top joints of my fingers. Wow. Like I said it was quite the appt.

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    • April 27, 2010 at 5:56 pm
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      Hey Julie, those are all RA symptoms you mention. Did he mention increasing your mtx or adding another dmard eventually? Here’s an idea: take a photo of any swelling if you can’t get in to show it to the doc. Some seem to put a lot of weight on seeing that with their own eyes. Good luck to you.

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  • April 27, 2010 at 4:01 pm
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    I think at this point I’d still have to agree with both Wolfe and Sarkozi. The symptoms do exist, but they have been “medicalized” into a huge profit making sub-industry for many steakholders.

    I think perhaps Sarkozi has hit on it when he states:
    “Thus, FM polypain is all about osteoarthritis, degenerative disc disease, tendinitis, bursitis, and fasciitis. These are unquestionably rheumatologic disease conditions that should always be diagnosed and managed by a rheumatologist. In the face of this, the recommendation by Shir and Fitzcharles for rheumatologists to abandon their care of patients with FM1 should itself be abandoned. Moreover, the Polypain Model should reinvigorate rheumatologists to better define themselves as the most qualified specialists to diagnose, treat, and otherwise manage the musculoskeletal and pain components of chronic widespread musculoskeletal pain. To further enhance the central role rheumatologists play in FM polypain, it is vital to reassert and expand the role of rheumatologists in managing the preeminent component of chronic musculoskeletal pain: the pain and its source.

    JEFF SARKOZI, MD, FRCPC
    + Author Affiliations

    Fibromyalgia Polypain Arthritis Center, 801 North Tustin Avenue, Suite 503, Santa Ana, California 92705, USA.
    Address correspondence to Dr. Sarkozi. E-mail: (email address deleted)”

    Wolfe said in his reply that RA (amongst other things) are irrelevant to the whole discussion, so I presume that’s why he didn’t address RA in his articles.

    And sleep problems and coping mechanisms, among other things individual and societal, can still affect/exacerbate these conditions I’m sure, but it doesn’t mean we’re just a bunch of mal-adaptive idiots or that we don’t deserve research into how to deal with all of these conditions. The research needs to go in another direction.

    What I do think this whole thing does is make it painfully obvious that a HELLOFALOTOF more research needs to be done on OSTEOARTHRITIS – in addition to much more research needing to be done on BURSITIS, TENDONITIS, FASCIITIS, and DJD (is DJD different than osteoarthritis?).

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  • April 27, 2010 at 6:00 pm
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    Note: the above quote is from one of the articles linked to in the post. I know it would take your valuable time guys, but if this topic is important to you, I hope you will take time to read the articles when you get a chance. I did not quote them extensively because I would rather you read the comments in context since some on are pretty inflamed over this issue (ie: “Wars” ).

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  • April 27, 2010 at 9:36 pm
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    😀 I’ve read the majority of these and some other papers. I realize there is a ‘war’ going on, and I’ve indicated where I currently stand on the issue with the reading I’ve done to date – which you s-e-e-m to be insuating is the wrong stance somehow, and that it’s at least in part because I’m not educated enough on the subject yet according to your standards, whatever they may be. But I’m still waiting for you to indicate what your position is on fibromyalgia Kel. You’ve been skirting it pretty well. Are you thinking that it doesn’t exist, at least in RA patients and that RA patients with ‘fibromyalginess’ symptoms are all due solely to RA, or what? That fibro is the beginning of RA or what? What have you got to lose by stating what YOUR thoughts currently are on the subject based on the reading you’ve done to date? Are you waiting on the results of some pending study that’s going to produce landmark findings one way or another? If you waited for everyone to read every paper and abstract on the subject before allowing comment and hoping they all come to the same conclusion as you, you wouldn’t get many comments. So enlighten me a little more. Give me the benefit of your education (instead of insuating I’m wrong but not telling me how you think so).

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  • April 28, 2010 at 12:29 am
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    Changes noted, so I assume you won’t post that other comment. I’m still curious though.

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  • April 28, 2010 at 6:26 am
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    I was diagnosed with Fibromyalgia by a rheumatologist, 9 years ago. I had 11 (out of 18) pressure points on my body that were affected. It was painful. On some days, I could not put a hairbrush through my hair, or have a turtleneck sweater touch my neck. The headaches were similar to migraines, but hit in the back of my head & neck. The muscle spasms were the worst … starting in my lower back and rippling down my legs in a domino-effect … every muscle would lock in overwhelming pain.

    Before I was diagnosed, I had a normal routine of waking at 5 a.m. and doing 5-10 miles on an exercise bike. With FM, there were literally some things I could not do with my body, i.e. sitting legs crossed, exercise bike, golf, any activity with a lot of walking (goodbye malls). It would cause those horrific muscle spasms. The symptoms were always worse, in the winter. So, it was almost like having FM for 4-6 months out of the year. In warm weather, life was almost normal — a little stiffness and pain, but rarely a muscle spasm. My doctor prescribed Parafon Forte DSC and Daypro. In winter, Tramadol HCL was added to the mix. With the exception of tweeking dosage (more in winter, less in summer), it took care of me for 9 years. Then, I was stricken with RA.

    About 6 weeks ago, I woke up feeling like a had a bout of flu from hell. I never confused it with the FM, because it was nothing like Fibromyalgia. The stiffness was much more pronounced than anything I had felt in the past. The pain was suddenly hitting my joints (not my soft tissue like FM). I began running 101 degrees of fever. Within 10 days, I knew it couldn’t be the flu. By then, I was losing strength in my arms (I could not lift a sheet over my body in bed). My fingers swelled and I could not open/close my hands. Tramadol didn’t faze the pain. The minute my rheumatologist saw me, he feared it was RA … ran the tests … gave the confirmation. He immediately started me on Methotrexate (kept the other medications as well).

    Six weeks later, I have some stiffness. I am regaining my arm strength, but still weak. I can close my left hand, but not tightly. I can only cup my right hand. But, thank God, I have improved. I am not in the horrific pain that I was first in when the RA hit. I have, almost overnight, become sensitive to cold. I have the AC off, or on 72 degrees. I wear sweaters & hoodies. When the RA struck, I was fighting hot flashes in menopause. Not now. I haven’t had 1 hot flash, since the RA began.

    I am still in the discovery phase, but … THERE IS A HUGE DIFFERENCE BETWEEN FIBROMYALGIA AND RA!

    Reply
  • April 28, 2010 at 2:35 pm
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    This is just in response to posts #21 and #23,#24 by “Chelsea”. While we are free to give our opinions, it should be done respectfully and not insulting to others.

    Chelsea,Kelly has never treated anyone’s opinion with anything but the utmost of respect and grace. It upsets me that you seem to be so rough on her in your comments. She has done so much good for SO many. The information she has so thoroughly researched, and the place she provides for others to learn and gain support, are both absolutely priceless for countless of us afflicted with RA. It’s also an invaluable resource for our friends and families seeking further understanding. So many of us appreciate her dedication, thoroughness, and determination in doing such a great job with the website.

    Her website is more than full time job in itself. That’s in addition to being a wife and mother, and fighting RA herself. You don’t seem to appreciate much about Kelly or the RA Warrior website , so why do you even log onto it???

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  • April 28, 2010 at 7:29 pm
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    Thanks for this post Kelly. I read the links you presented. It certainly is a war in whether Fibromyalgia exists and why and how. I am listening to all sides at the moment. I feel that deciding either way, until there is more proof, would just be an uneducated decision. The history of medicine proves this over and over, such as when RA was considered a psychosomatic illness. I like this quote “All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as self-evident”-Arthur Schopenhauer. If it’s not truth than I guess it will be thrown out. I read a rheumatologist’s blog (All Joints Considered) in which a post about FM had 98 comments from other doctors. Most were so negative and opinionated, I thought it was sad. If I have FM, I would have a hard time admitting it because of the ridicule it gets. My rheumatologist carelessly diagnosed me since I still had pain when my ESR and CRP were in normal range(albeit barely). In spite of that, he started me on Enbrel and I had more improvement in my pain and fatigue level as well as my blood tests. I do not accept the FM diagnosis at this time for many reasons. I am in the process of switching to a new doctor. I got copies of the old doctor’s notes, there were many discrepancies, including that he stated I had 18 of 18 tender points positive. In fact all he did was squeeze my left shoulder and right elbow, that doesn’t add up to 18 in my book. I would have never thought I could get copies of doctors notes until I read it here Kelly. Thanks. My new doctor wrote a book on FM, so when I see him in May I expect I’ll get a more thorough and careful diagnosis if I have FM.

    Reply
  • April 29, 2010 at 12:17 am
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    Julie, I do appreciate the time and effort Kelly puts into this site. Perhaps we don’t agree on everything, and that’s o.k. as long as it’s handled with civility. I can’t tell in relation to FM, because she’s decided to not let us know where her current thoughts on the subject are, perhaps because it is so contentious. Regardless, she went in and edited her response to my original comment to make it sound like it wasn’t so specifically directed to my original comment – which at first it was. I caught the changes before she allowed my second post to go through and sent another in the hopes then that she would not put my subsequent comment up – but for whatever reason, she decided to let it go through. Perhaps she has a personal problem with me? I don’t know. Regardless, it is her site, to do with as she pleases. She is very read in the field, so I cannot understand why she yet chooses to not indicate what her feelings on the subject of FM, or FM and RA are. I think most of here understand it is still a very evolving area and that things could really change. I did see somewhere that the ACR has proposed new guidelines for diagnosing FM, but that some FM patients don’t feel these goes far enough yet. I also see that Sarkozi doc’s web site seems to be all about selling his book. Wonder what Kelly will think about it when she gets done reading it. One thing I’m thinking is that we certainly are products of our society in many ways.

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    • April 29, 2010 at 8:50 am
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      Chelsea,
      I have not and will not argue with every remark you say to me that I find unfair. However, for the sake of readers it is important that I address the accusations which imply any dishonesty or disingenuousness on my part.

      The fact is that this is the first comment directed to you on this post. As I was headed out the door for the evening to a Boy Scout event, I sat and quickly responded to a few comments. Then I made a general comment about your long pasted quote, once again encouraging the readers to read the whole article. I typed as quickly as possible & took off with my kids. When we got back, my daughter and I were moderating comments and noticed your angry one. I said aloud, “What is she mad about?” My daughter said, “I think she thinks you were talking to her.” I argued with her that that would make no sense in the context of what was said. For example, it was obvious that Chelsea had read the articles, so why would I recommend that? Plus there is the fact that I have never taken a sarcastic or rude tone with anyone on this blog ever. Then there is the fact that I nearly always begin my direct replies by using the person’s name. Then there is the fact that I used the comment link and not the reply link.

      I argued with my daughter, but I needed to get busy working on my post since it was already late, so I decided she might be right and added the word “guys” to my comment and would get back to the matter later. Then I spent several hours working and a few sleeping, posting all the comments when I came back online. I noticed you made another comment, which sounded like an accusation that I had dumped your angry one. I do not dump comments. I’ve been over that. I know other bloggers do since I’ve been dumped. There are 5,000 comments here. Of course I don’t agree with them all. But I respect others enough to not delete their comments unless inappropriate.

      So much more could be said to correct the wrong assumptions or implications about me or the blog, but I really must focus my time the best I can. Every day, I spend hours replying to emails, comments, and messages. I am a full time mom and teacher, too. Often, I write late at night or early in the a.m. to post the blog almost daily. I have no employees except the occasional help from my teenagers. Someone may spend weeks preparing an academic paper – I have only a couple of hours to digest it & then provide an introduction to it to my readers. It is what I choose to do because I believe it is important. The point is: I always do this in a tired & hurried manner. So, I may make mistakes like any reporter. But accusing me of dishonesty had to be addressed.

      Reply
    • April 29, 2010 at 9:10 am
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      Chelsea, I neglected to mention: There is still a several page long comment from you which consists of pasted material sitting in my “pending”. It is not deleted either, but it has been in pending for several weeks because you wrote “FOR KELLY” at the top and then filled it w/ pasted material from other sites / articles. It seemed you did not want it posted, but only me to read the content you were leaving. I view it daily when I moderate comments. I copied the content into a Word doc. to read when I have time, but I have not deleted the comment since I only delete spam.

      Reply
  • April 29, 2010 at 9:55 pm
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    I was diagnosed with FMS a couple of years before the RA diagnosis. My rheumy treats them individually and acknowledges them as REAL & separate health issues. I can tell the difference in pain between the two. I fell so blessed to have the rheumy that I do and that she does recognize the differences in FMS & RA.

    Reply
  • May 4, 2010 at 5:16 am
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    Apparently, FM patients just need more exercise, better nutrition, good friends, and lots of good se_, which will lead to more restorative sleep. Link to article

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    • June 16, 2011 at 1:26 pm
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      I wish it was really that simple.

      Reply
  • June 12, 2010 at 10:27 pm
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    I was diagnosed with FMS 4 yrs. ago. I was treated with prednisone. I got a different pcp and he became concerned that I had visible joint swelling, blood clots,reynaud’s syndrome, oral lesions, IBS, Inter stitial cystitis, ect… He told me that these symptoms were not FMS he just did not know what they were. All my blood work would come back negative. I would have periods of no symptoms and then periods were everything would flare up all at once. I just saw a rheumy last Wednesday and he told me he believed it was Palindromic Rhuematism. It was a relief because the Dr. who diagnosed FMS would laugh and call me his mystery patient and put me on drugs like coumaudin, lasiks, prednisone, and about 12 other scripts that I took daily or monthly. Currently I am taking a baby aspirin, Hydroxychloroquine, and Aleve. I am just trying to learn more about PR now.

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    • June 12, 2010 at 10:40 pm
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      Hi Sara, there are a couple of PR posts here – Did already you find them? I’m glad you found this new rheum doc. Sounds like you are on the right track now. That’s important because some say half of PR diagnoses become full blown RA. Mine did. I hope it doesn’t!

      Reply
  • July 8, 2010 at 11:44 pm
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    Hello, I only just discovered this site today. I was searching because I was discusted with myself for not being able to force myself out of bed and to work today.

    I began having physical difficulties about 15 years ago. First it was my hips and back. I had sciatic nerve pain that made walking extremely difficult and lasted off and on for about 2 years. An MRI of my back shown degenerative disc disease throughout most of the spine. A bone density test revealed mild to moderate loss. A Chiropractor helped both conditions a great deal as well as modifying a physically strenous type of work. I learned to live with and ignor pain to a certain level and managed well unless I ‘overdid’ myself physically. What I did develop was a lot of cracking and poping of most of my joints.
    By happenstanse in 2005, while I was in a chiropractors office with my sister for her visit, the Dr. heard my back pop from across the room when I stood up and bacame immediatly concerned. He looked me over for a few moments and asked if I would see the medical Dr. tht worked in his building. I agreed and the Dr. ran some blood tests and phoned me saying it was urgent that I see a Rhumatologist immediatly because I had RA. I did not know what that was at the time.
    I saw a rhumatologist and he ran blood tests again and put me on plaquanil and B12 injections. I took the meds for about 6 months and kept the flu or a cold most of the time. I decided that I had been misdiagnosed because I didn’t have any problems with my fingers like I had heard that was what RA affected and was sick of being sick taking the meds so I stopped. I could tell no difference except that I didn’t have the flu anymore. I would occationaly have severe onsets of pain in different parts of my body that would render it usless for several days at a time, like unexplained sholder pain or elbow pain and my feet always hurt. About a year and a half later I saw a med Dr. for a physical and then she asked me to see a rhumatologist. I reluctantly agreed and the rhumatologist went through all the blood tests again. I told her that I did not think I had RA just because my RA factor was high. She told me that not only did she test my RA factor which was high but a new test for RA testing CPP1 was also extremely high and would only come back like that if I had RA. She put me back on plaqunil and B12 injections. I only saw her for about 3 months and then my medical insurance ran out. I was ok though. I could do normal activities, excersize, dance etc. Now I can’t. I am tired all the time. I can’t walk like I used to because my feet hurt too bad and swell. My hip feels like it’s comming apart most days. my wrists and knees hurt and swell sometimes. It’s all I can do just to work everyday. Household chores suffer…….
    It took me a year and a half to get to see a rhumatologist again because I still have no medical insurance. She ran all the blood tests again… RA high CPP1 very high ANA high again. But because my joints in my fingers are not deformed and swollen….she said it was confusing and she called it fibromialgia because I have so much soft tissue pain and said she did not want to put me on any type of treatment right now. After spending about 3 nights overnight in the hospital with my Mom who has cancer a couple of weeks ago, I am still not recovered from the sleep loss and pain of cat napping in the recliner in her hospital room. And even the threat of becomming homeless again, which is a real possibility if I miss more than 3 days of work a month because my budget is so tight, couldn’t get me out of bed today. I don’t understand what is wrong with me and I don’t know What to do?
    I am glad I found your site today. Now I know I’m not alone or just crazy.

    Reply
    • July 8, 2010 at 11:56 pm
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      Hi Jewel, I’m really tired, but I’m glad you found us too!! You don’t sound crazy at all to me. 🙂

      I hope there is some way you can get a second opinion. You are right that CCP test is very specific to RA. Good luck to you and your mom.

      Reply
  • July 24, 2010 at 1:14 am
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    I went to a RA specialist. Waited 2 mo for the appt. She looked at me and felt some areas of my body and said you have fibromalgia. Didn’t even say anything about RA. I asked about my swelling she said something like its not in your joints its underneath or something like that. She sends me off with a prescription for Savella. Now waiting for my next appt to the RA to discuss my blood work and get x-rays and ultra sound. Savella didn’t help my fatigue or my swelling or joint pain. All it did is upset my stomach and make me dizzy. So frustrating.

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  • July 29, 2010 at 1:28 pm
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    Thank you very much for the infomation Kelly.My story is my rheumy told me i have RA first and just 2 days ago that i have Fibro.He also said that alot of people with RA will get fibro,that for some people they seem to go hand and hand.I also was prescribed muscle relaxers.I do have severe swelling with my RA and was haveing a bad flare up when i went to the doctor.He said the swelling was my RA and the painfull muscles was Fibro after he tested the pressure points,and asked some questions.Thanks as allways Kelly.

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    • July 29, 2010 at 2:34 pm
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      In some ways this is odd because all of the lists I’ve seen include muscle pain and spasms, etc as RA symptoms. This is part of the reason this puzzles me. :O

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  • July 30, 2010 at 12:55 am
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    It’s funny. I’m reading a book on RA that was written in the late 1800’s. Many of the comments are still written today about potential remission, etc. Which really makes it funny. Sure some of the ideas are outdated, but so many are just re-hashed BS. The section I was reading last had to do with the muscle degeneration in RA.

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  • September 20, 2010 at 7:25 am
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    Hi Kelly
    Thanks for all that you are doing. It’s been a great help to read about folk who truly understand the horror that is RA but at the same time are determined to live.
    My question is about Polymyalgia Rheumatica (PMS) and it’s this – when you speak of fibromyalgia is this the same in your thinking? I was diagnosed with polymyalgic onset Rheumatoid Arthritis. Have you come across this in your research?
    Blessings
    Trevor

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    • September 20, 2010 at 10:35 am
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      Honestly, I don’t know if it’s the same. And from the definitions available online, it sounds like it does not mean the same thing to everyone. Your diagnosis is an interesting label. I have heard various phrases added to the dx of RA, but I have not researched it.

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    • September 20, 2010 at 10:39 am
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      No, I do not know if they are the same. From the definitions available online, they do not seem to mean the same to everyone. That is an interesting label attached to your RA diagnosis. I have not reasearched that. I wonder how many doctors use that label?

      Reply
  • September 20, 2010 at 1:52 pm
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    This is my first post to this site but I read on your site daily Kelly and have learned so much from you and others. Thank you Kelly for your hard work and everyone for their contribution. I just turned 52 a couple of days ago and I was diagnosed with FMS in 1998 and about about a year ago finally diagnosed with Rheumatism NOS, because I am not fitting into the little box my rheumy has for RA yet. My symptoms are progressing in the hands and feet as well as hips shoulders and elbows but I don’t have a huge amount of visible swelling. a year ago he tested for parvo and checked my ESR and one other test I can’t remember right now and all came back negative. RA, reynaud’s syndrome, and other immune disease run in my mom and dad’s family. I am convinced I have RA and have had it for some time. I am more convinced every day that FMS is the beginning of RA. Thx for this topic. I haven’t read all everything on this post as I am at lunch at work and will read it all later. Thank you all.

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    • September 20, 2010 at 2:05 pm
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      Thanks Judy. It’s good to hear from you. I’m curious why the doc thinks not “RA yet” – is it related to the swelling you mentioned? Did you see the swelling post – it’s under February? Or see my latest video? Swelling seems to be a catch for some doctors.

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  • September 27, 2010 at 11:21 am
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    Hi!
    I strayed onto this site recently from Rheumablog and have been very interested with what I am reading. This recent comment by Trevor prompts me to add my pennyworth!

    I was diagnosed last year as having polymyalgia rheumatica. The symptoms had been around for about 5 years but since I had no abnormal blood values and was “too young” PMR was never considered despite the clinical picture being typical: hip and shoulder stiffness, severe pain in major muscle groups (eg thigh muscles and biceps), morning stiffness, night sweats, proximal joint pain etc. The rheumatologist I was referred to also disputed the idea, wanting to dx another form of inflammatory arthritis even though he had tried me on 15mg/day prednisolone and the symptoms responded within 24 hours – there was some improvement within 6 hours! They returned within 28 hours of stopping the steroids. A member of my GP practice was convinced enough of the diagnosis to allow me to continue with pred.

    Whilst I have done a lot of research on PMR, I am amazed and so impressed by Kelly’s work and can only congratulate her! In the sense of this thread, I wanted to say that I have begun to think that fibromyalgia, chronic fatigue syndrome and PMR are possibly all points on a wide-ranging continuum of signs and symptoms, both are descriptive names for syndromes which have not yet been assigned a cause other than “maybe of autoimmune origin” and which merely baffle the doctors we see. I gather it is not uncommon for people to have dx’s of either and later be diagnosed with RA – possibly because it is a seronegative RA or there seems to be some thought that they may be precursors of the RA. It was considered briefly in my case.

    However – when I voiced the thought about a continuum I was pounced on hard by doctors involved in PMR research, it was not helpful to confuse the two as that might devalue or confuse the PMR diagnosis. I only know that there were so many things that ticked boxes on all of them and, in fact, more than 30 years ago I had something that really does tick most of the boxes on a ME/CFS sheet which resolved after 3 or 4 years. It started with a severe flu-like illness which left me unable to stand for more than 5 mins, unable to walk up stairs unaided, fatigued, nauseated etc and accompanied by abnormal liver function tests and the effects lasted for about six months before starting to improve before I was able to see a specialist who said “some strange virus probably”. Over the years, I had repeated episodes of the fatigue and constant back problems which have resolved almost completely since I started taking the steroids.

    It seems to me that a wider consideration of these illnesses is asked for – but I suspect that the medics are too much like politicians. Each is too convinced of their own version so that they cannot listen to each other. I will look forward to more thoughts here,
    Eileen

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    • September 27, 2010 at 11:47 am
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      That is a funny analogy Eileen.
      Also, I hear it a lot, but I don’t understand the “too young to be diagnosed” – Children are diagnosed w/ various forms of autoimmune arthritis. Dx peaks before age 40 from what I can tell. I just don’t understand doctors who say that.

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    • September 27, 2010 at 11:39 pm
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      I’ve wondered at times about PMR, perhaps along with the RA in myself. But yes, “too young for that!” Eileen, of course the docs would respond as such. For one it would be too hard to methodically study, and it would undo the self-sustaining funding of the academic and pharmecuetical research industry.

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      • September 28, 2010 at 5:29 am
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        The other thing I’m becoming increasingly convinced about is the assurance by many doctors that “PMR burns itself out in a couple of years” has less to do with the PMR disappearing than with the patients disappearing!! There are repeated assertions that you don’t get it until late 50s – the average age of the patients at onset is claimed to be 74! Those of us who suffer with something at a younger age that doesn’t provide a lab value they can latch onto are soon filed in the “hysteria, depression, somatism” drawer. It is well known that anyone who has an autoimmune problem of one sort is more likely to demonstrate another at some time – so why is there this ostrich attitude to these things that present so similarly and could quite well be connected?

        Chelsea – you are so right about Big Pharma. I refused to take the alendronic acid anti-osteoporosis drug (Fosomax) because my conclusion was that the clever marketing by the company has created a market amongst the “not yet ill” which will possibly turn out to have a sting in the tail. It won’t be the first time! Now it is in massive use this is appearing to be the case – how long before the doctors who have been telling us “the opinion is that prevention is better than cure when it comes to diminished bone density” are going to have to admit that the risk of oesophogeal cancer makes it a drug to be used with care not just handed out like sweeties?

        It is that clever marketing that has led to demands by pressure groups for a drug that costs tens of thousands of pounds to be dished out to everyone with a certain cancer because a study suggested the patient might live for a few weeks more. You only have to look at the Lockerbie bomber to see how unreliable assessments of life expectation can be. That aside though – maybe I’m just too old but I regret the fact that affordable health care has been made an almost unattainable dream due to greedy big finance :-X Sigh!!
        all the best, Eileen

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    • June 16, 2011 at 1:41 pm
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      Very well said. It iss very sad it is that way a large portion of the time.

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  • October 1, 2010 at 12:47 pm
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    So glad to have found this post. I was diagnosed recently with OA and the Dr persists with wanting to diagnose FMS. He hasn’t tested me for tenderpoints and the only muscle pain I have is due to cervical facet arthrosis. But he thoroughly tested me for all of the inflammatory markers, RF, etc. All normal.The strange thing is my ortho had given me a Medrol pack for chronic neck pain due to the arthrosis and within 24 hrs I felt wonderful! After I finished the medication I am back to the same pain neck, hands, feet etc. It makes me suspicious of RA but I probably only have a score of 5 with the new criteria so…….When I asked the Rheumatologist about the steroids he said “that’s strange because you don’t have inflammatory arthritis maybe you should start Lyrica (I guess for the FMS I don’t have?)

    Reply
      • October 1, 2010 at 6:43 pm
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        Kelly you are a gem! I did read all of those and YOU have given me a lot of inspiration to not give up until I get a diagnosis that fits. I absolutely know I don’t have Fibro (I fit very few of the criteria) and it worries me that the rheum doc is sticking on it. I know I have arthritis (bonescan and x-rays are positive) and my joints are stiff and painful bilaterally mostly hands and feet. But if it is premature onset OA and/or RA…. I just want the correct diagnosis so I can get a treatment that works!

        I think I could have sub-clinical inflammatory arthritis. When the ortho gave me the medrol, I thought “this isn’t going to work because all of my labs say inflammation isn’t the problem. Medrol is a steroid dose pack. Taking that was like a miracle! Within 24 hrs I hand almost no pain, normal energy and I lost 4 lbs! I just keep longing for the relief that that 6 day pack brought me! It was so wonderful and it’s really almost cruel now not to have it. If I don’t have inflammation why did the steroids have that effect?

        So in my case, I think it is a great example of Diagnosing FMS as an assumption, a garbage can diagnosis. I don’t meet the criteria but because…… I am a 42 year old woman, who isn’t responding to OA drugs, and I cried in his office when he wanted to try me on a Mobic/Flexeril combo. I cried out of frustration because I had been taking similar combos and physical therapy, for 9 mos with NO relief! I think he looks at me and says “You have mild OA you shouldn’t be in pain like this and the drugs should be working so you must have FMS especially since you are so emotional.”

        I really don’t know what the next step is for me.

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        • October 2, 2010 at 9:16 am
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          Hi Tracy – I thought I had posted a suggestion to you but either it has got lost or I put it in the wrong place or Kelly filed it in the trash (which I really don’t believe for a minute so we’ll put it down to lack of ability in the blogsphere!).
          I don’t have RA although it was considered briefly – I have something called polymyalgia rheumatica (PMR) and I got to Kelly’s great site more by accident than anything else. However – her stuff about fibromyalgia wars has spoken tons to me and I’ve found so much useful info! When I was researching my problems I realised that some of the symptoms were common to the early stages of RA, FMS and PMR. I have had it for at least 5 or 6 years, relatively mildly, and severely for about 18 months. Until more than 6 months after the severe stage started I went to doctors who said it couldn’t be anything bad as all my blood values were normal or even low. After a load of my own research I went back with a suggestion and – to cut a long story in half – was given a trial of 15mg/day prednisolone. Within 6 hours of the first dose I was able to walk downstairs like a normal person, not a toddler one step at a time. Within 24 hours the symptoms were at least 70% better and within a few weeks the majority of the problems were gone.
          The point of this story is that PMR causes stiffness and joint pain and most doctors believe is accompanied by raised ESR and CRP and only appears in persons over 55.
          The UK PMR/GCA patient support group is working to bring attention to the fact that much younger people can have it and that at least 20% of patients, especially the younger ones do not have abnormal bloods. And it is typical for PMR symptoms to respond dramatically to a challenge with prednisolone – none of the other forms of rheumatic disease that are helped by steroids show such a fast response, within hours often. Your description of your response to the Medrol jumps out at me and makes me ask – is it PMR??? If you google pmr-gcauk northeast support site you will find information including the rheumatologist’s association guidelines for diagnosis and treatment. I feel your frustration as I was there too but muscle and joint pain and “being emotional” are awfully common in PMR and I must have lost some weight as so much swelling disappeared when I started the steroids – my feet and ankles went back to a normal shape after years of being puffy and shoes being unwearable! I should also say that I know there are people who are diagnosed with PMR and who later go on to develop RA so confusion of the two is possible. But I think it might be a possible answer for you.
          Whatever happens – good luck.
          Eileen

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        • October 3, 2010 at 2:09 pm
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          Hmm. Wish I knew. For me, it was new a rheum doc search. They do NOT all dx or tx the same! Hoping for help soon.

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  • October 2, 2010 at 10:08 am
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    Thanks Eileen I read your post and I immediately related to that steroid effect. I will have to figure out how to approach this with the Rheum Dr.,. with out coming off as accusing. Or maybe I just need to go to someone else. I need to discuss the FMS with him and how he is coming up with that when I only have pain in one muscle! Trying to be patient but not passive!

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    • October 2, 2010 at 3:25 pm
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      There is an American site called arthritisinsight.com/forum and there is a very relevant thread on depo medrol there on the polymyalgia thread – plus lots of other info, threads and questions which you might find of interest. There seems to be a rather better handle on PMR in the UK though heaven knows it’s bad enough there but Rick who posts on both the arthritisinsight and the UK forum has lots of US-related info to pass on – he knows your system far better than I do and always has great advice.
      keep in touch and let us all know how you get on, Eileen

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      • October 2, 2010 at 8:37 pm
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        Thanks Eileen I will go there now ♥

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  • October 14, 2010 at 11:34 am
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    That is a powerful article. Kind of annoying, however, how it seems with the increased discussion of FMS, the pharma companies and the docs got together to make more money. At one point, after being diagnosed, I was on Neurontin/Cymbalta or Lyrica/Cymbalta and the last treatment I received was Sevala only. Most of the adverse affects I had from these were that I didn’t want to interact with people/family (especially my husband and children) and I found it unacceptable. I guess you can say it made me more depressed than I was before being diagnosed with depression in 1999. Depression runs in my family, so I don’t allow the doctors to include that in my symptoms, because it is hereditary on BOTH sides. I felt like a guinea pig for so many of the drugs prescribed….to “see if it would work”. Most of the time I would wait and wait and wait for them to work, with nothing but momentary relief. Not even the ambien I was prescribed helped any of the symptoms. I wasn’t sleeping well, because I was in pain. And I was always stiff in the mornings, trying to get OUT of bed was horrible.

    Do I believe FMS is real? I don’t know. I still there there HAS to be an answer, a reason for what is happening, for the pain. I have a high pain threshold. I do believe in mind over matter, so when I get the little aches and pains, I try to push through them, because I have 4 people who depend upon me, I can’t _not_ do what has to be done. So I guess that blows another FMS symptom out the window, because I’ve read that FMS individuals have a low tolerance for pain. My diagnosis of FMS came from a doctor who didn’t _want_ to look into my problems, wanted a quick fix, who would hit some website or program on his computer and ask questions from that prgram. His initial thought was arthritis of some sort. When I mentioned my chiropractor had thought of fibromyalgia, he jumped up from the computer (after looking it up), tested my tender points and said “Yep, here, let’s try Lyrica.”

    After that, I went to WebMD and did my own symptom entering and found that FM was closer to 10th on the list…at the top, arthritis, PsA and RA….and no one would listen to me after that diagnosis…they would only treat for FMS. For 6 years I suffered, was a test subject for various prescribed drugs and finally, found someone who erased the slate and ran new tests.

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    • October 14, 2010 at 11:48 am
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      Kat, you have such a scientific mind – I think you’d like reading the Sarkozi book although it’s too expensive. I haven’t published a full review on it yet, but his ideas do sound more legit than all that stabbing in the dark that’s going on.

      Is fms real? Symptoms are real & patients are real – It’s just a matter of whether diagnoses are accurate or treatments are effective toward the CAUSES of the symptoms & not just masking the symptoms. I think thats what it’s about for good docs. (Bad docs who role their eyes & think we are hysterical are not worth the time of day.)

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  • October 14, 2010 at 8:53 pm
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    My FMS diagnosis came after a long and varied history of aching muscles, severe pain in feet and ankles, mind-altering fatigue and “fog” that terrified me, IBS, and no relief from anywhere. I did have one doc, one very good internist, who said he believed I had RA despite all negative tests – this was back 30 years ago. My mother had recently died as a direct result of RA, and I didn’t want to hear it. I was treated with butazoladine, indocin, ibuprophen. Then my stomach rebelled, and I had to quit taking NSAIDS. I was not put on pred.
    I went 15 years with foot and leg pain, vague muscle aches, and horrible fatigue. I had off and on sweats – attributed to early-onset menopause. Of course! This is a FEMALE! She’s hysterical and menopausal! That’s the problem!
    My fatigue and migratory joint and muscle pain continued as I struggled to get a PhD. At the end, after graduation, I was just too tired to try to get a job. I had to rest for about 8 months before I had the energy to look. After finding a “dream job” that used all my background and education, I became too fatigued and in too much pain to work anymore.
    At this point, or somewhere around here, I was diagnosed by an excellent rheumatologist with FMS. That time period is a bit of a haze. I don’t remember what meds he wanted me on. I found an alternative therapy and tried it out. It seemed to work, or at least I felt a bit better on it.
    Eight years later, my right knee “blew up,” I had an MRI and some blood tests. Dx? RA!
    But all the RA drugs I have been on have not helped the muscle pain, nor all of the joint pain. They haven’t helped the IBS or the brain-fog. I have flares of RA and flares of fibro. They are distinct from each other – at least in my experience.
    I finally began to get some real help for the fibro when my rheum doc put me on Lyrica – but the side effects are miserable. At least I can sleep at night, though.
    So, in my not so humble opinion, fibro and RA are distinct, but overlapping, phenomena. They are experienced individually by each person. There may be idiosyncratic symptoms that are experienced by only a few.
    So, there you have it. FWIW.
    Cheerio!
    Elizabeth

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    • October 14, 2010 at 9:30 pm
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      I suppose I just got very synical about the entire FMS thing, mainly because not one doctor would ignore how the initial diagnosis came about (my suggestion because my chiropractor thought it sounded like it). Nothing else was ruled out, so I got treated with various drugs, some should never have been mixed together but they did it anyway. I detoxed myself after I found a doctor who would listen, with her adivce, and found out 2 weeks after seeing her that I wasn’t nuts, that I did have RA.

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  • January 27, 2011 at 7:45 pm
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    i was first diagnosed with ra in 1981 and since then have seen many changes. i was diagnosed with fibromylgia in 1995 and since then have seen many doctors. nothing worked untill i started taking gabapentin two years ago. it has made a real change in my life. unfornately i also have extreme spinal issues so am forced to also take pain medication. i also take visterall and amitrytplyn which when all used in conjunction have given me somewhat of a life. i dont want a diagnosis as much as a way to either cure or keep at bay

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  • February 7, 2011 at 9:46 pm
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    I have been diagnosed with Fibro, since 2005/2006. I am, however, thinking more and more that it may be a wrongful diagnoses.. I have raised concerns with my doctors for quite some time, about my fingers starting to turn in “weird” ways. I.e., my pinky fingers, are now bowed, looking like they’re growing towards my ring fingers, like they want to hug each other. I have several other conditions, some of which, to this day has been impossible to diagnose. I am one of the chronic pain patients, not only with joints and muscles, mostly my stomach. I have gained the knowledge after spending 17 years, in and out of hospitals. I’ve been treated like the worst heroine addict walking in off the streets, like someone not in pain at all, like a piece of crap!
    My husband has been with me for almost 9 years, seen my ups and downs. And the doc’s at the ER. They will not treat me badly when he’s around. When he isn’t, they will run over me like a piece of gum on the floor. When you’re in as much pain as many of us chronics are (and when we finally get our butts to the ER, realizing that we can’t deal with it ourselves anymore), we’re usually in no position to fight and argue. At that point it’s hard enough to try to move, talk and get pushed and prodded.
    Is this a common problem for many people? That you get ran over when you have to go in by yourself?? (we have a toddler and a pre-schooler at home, no family in the state. Don’t wanna use babysitters or friends every time I get a flare!)

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    • February 7, 2011 at 10:06 pm
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      Frida, you might like to read this post – click here – about the ER and the comments page with others’ experiences. There is also another FMS post in case you didn’t see it. I hope your doctor will take a look at your concerns about your hands.

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  • February 7, 2011 at 10:04 pm
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    sorry, wrote that response on the wrong topic.. =)

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    • February 7, 2011 at 10:43 pm
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      I think we were typing at the same time. I hope you see my reply.

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  • April 13, 2011 at 4:33 pm
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    I just came across this article last nite. Maybe a link from #Rheum twitter page?
    New York Times Article, “Drug Approved. Is Disease Real?”
    Published: January 14, 2008

    http://www.nytimes.com/2008/01/14/health/14pain.html?pagewanted=1&adxnnl=1&adxnnlx=1302681638-opOk75zS58c78oERCBi5iA

    Here are some thoughts from Dr. Wolfe mentioned in that article. He was one of the initial researchers who came up with the original (1990) research diagnosis guidelines for FMS. He also contributed to the updated 2010 guidelines. I guess he thinks FMS is not a disease unto itself but rather just a set of physical responses to life stressors and that it does fall on a continuum. He feels the set of symptoms has been “medicalized” by Big Pharm Industry just to make a buck.

    “Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

    “Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”…But physicians who are opposed to the fibromyalgia diagnosis say the new drugs will probably do little for patients. Over time, fibromyalgia patients tend to cycle among many different painkillers, sleep medicines and antidepressants, using each for a while until its benefit fades, Dr. Wolfe said.

    “The fundamental problem is that the improvement that you see, which is not really great in clinical trials, is not maintained,” Dr. Wolfe said.

    Still, Dr. Wolfe expects the drugs will be widely used. The companies, he said, are “going to make a fortune.”

    Another doc quoted in the article said this, “Most people “manage to get through life with some vicissitudes, but we adapt,” said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. “People with fibromyalgia do not adapt.””

    I read a different article the other day that said a researcher tried using a hormone in chronic pain patients (many who sounded like Fibro patients, many were overweight which is often noted of FMS pts.) that was allegedly quite succussful in treating their pain, although it was a small number of patients in the study. I think it was human growth factor or another human something hormone. I don’t have the link to that one.

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  • April 23, 2011 at 4:51 pm
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    Well, Kelly, I am another one who started out that way. After a mysterious insect bite, followed by a tiny red rash over my chest, neck and face, in 1996. We were visiting inlaws in S. Dakota,in June looking for property, and walking through tall grassy fields with herds of deer in them, we returned to Wa. state. Two months later, I woke one morning in the most agonizing, non-stop pain I have ever experienced. It was in every joint,and radiated through my whole body. the pain was constant, day abd night; I was only able to sleep a small part of every hour, at one point curled in a fetal position. My GP at the time had nothing to say except that to give me any kind of medication for pain would turn me into an addict. Can yoou believe he really believed that? Finally,in October, he referred me to a rheumatologist who did some bloodwork for Lyme Disease turns out, if it was lyme, I was in the 2nd or 3rd phase by that time, and the test would have been negative anyway, or so I have been told.
    He gave me a scrip for pain med., and one refill and told me to “Hang onto it—you probably won’t get any more…” My GP disagreed with everything the rheumatologist did, but it seemed the two of them never really communicated with each other. It was very confusing to say the least. He told me to see him again in a month. I did, and at that time he diagnosed FM, and accused me of trying to ‘turn him into my Primary Care Doctor.’ He again told me to return in a month. I sat in the parking lot in tears for a while before I was able to drive home that day. Later, I called to make the appointment, and his receptionist told me, “The Doctor does not want to see you again.” I explained that he had told me to return in one month, and she still insited that the Dr. did not want to see me again. After I asked if I could please speak to him, she said: “You owe him over $900 dollars, do you know that? Maybe you should change your politics.” Then, I realized what was going on; I am the dependent of a retired AF officer, and not able to get care at the base here. There was a concerted effort here at the time to refuse care to military dependents, among the local rheumatologists, and more than a few left the area. It was seven years before I found one—I did get the clinical notes from both doctors in which I discovered several mistakes which made me wonder if the rest of the charts were mine or another’s.(my age was 6 years older than I am)and the rheumatologist stated that I ws RA positive (after telling me “I do not, repeat, Not think you have RA). That statement found in my chart kept me from being eligible for insurance for assisted care in the future.
    The new GP has been very caring—keeping me on the Effexor and plaquenil on which I was started in ’96. An MRI was finally done in 1998 which showed ‘severe joint damage only seen in RA.’ I was then seen every 4-6 months, only allowed arthritis strength Tylenol for pain, which works pretty well for me, since the pain of that first four month period let up after the first of the year.Three years ago I had rods put in at L 4/5 for congenital narrowing of the spine, and arthritis damage in that area. No pain in that area since the surgery, but everywhere else continues to do its thing.
    I started Humira two years ago, and after one year of weekly injections, I developed a rash and myeloma on my forehead (I had been told years before it was ‘just an age spot’)which was successfully removed.
    The new rheumatgologist has decided to treat the FM before attacking the RA, and I started on Lyrica two days ago. I feeel very good about this Dr. and hope I will not be let down.

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  • June 15, 2011 at 8:16 pm
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    Getting a FM dx has been awful, not because I don’t have it, but because now everything else is chalked up to fibro. Even when I have clear and obvious physical symptoms. I was sent home from the ER in a full gall bladder and pancreas attack despite clinical findings of a grossly distended abdomen and swelling, as well as liver spasms. But because fibro is on my chart and I occasionally take narcotics for spinal arthritis, gee, I must be a hypochondriac pill seeker.

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    • June 15, 2011 at 9:23 pm
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      hate to say, I HEAR THIS stuff a lot. :/ Sorry It does become a scapegoat to every symptom becuase it is such an undefined diagnosis. What Wolfe describes has happened: it starts to work backward with blaming symptoms on the diagnosis as if the diagnosis of exclusion is suddenly a “cause.”

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  • June 16, 2011 at 11:43 am
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    Medically I am not qualified, but treatment by Doctors, physically , mentally, emotionally and relationship wise we can very much relate.

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  • July 16, 2011 at 9:01 pm
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    I was diagnosed with RA 7 yrs ago, FM and RLS 4 yrs ago. 2 yrs ago I broke out with Psoriasis in my scalp. I have taken Cymbalta now for 4 yrs. It does help, but I feel “flu like” every single day. I have tried Methotrexate (RA), many types of vitamins, Mirapex (RLS), Prednisone (RA), Methadone for pain, Elavil (FM), Ambien to help sleep (temporarily), Flexoril, etc…. Currently am only taking the Cymbalta. I am miserable. The general area I reside in seems “ignorant” to the FM. I know the “war” is going on, but it doesn’t help the misery of suffering day in and day out. I attempted to stop my Cymbalta recently, on my own, I was unable to walk. Ended up at the dr. to get a new script. I am just tired of taking meds, sick, and wish their was more out there to help deal. Sorry, just not having a great….decade, lol..

    Reply
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