The Post

Comments (118)


118 Responses to “Are Fibromyalgia Wars & Rheumatoid Arthritis Related?”

    1. Susan Galyon says:

      I found out I was also diagnosed with FMS from the check-out form given me by my rheumy years ago. He had written 4 codes on the sheet and when I arrived at the check out window, I watched the clerk write down the dx for each code. RA, Pervasive, OA, FMS were the 4 codes. I stood in stunned silence. At my next visit, I talked to rheumy about the 4 codes and he explained the concept of RA present in large, med large and small joints and spine leading to the pervasive code. The OA was significant from a life as an athlete. And rheumy said my pain and tenderness over trigger points were classis FMS. He also noted my blood work rarely remitted so he considered me to be escalating. I asked if he thought it significant for me to know those things, and he replied he thought I was doing better than any of my medical data indicated and that he hoped my knowledge of the dx would not change things. I remarked that he sounded like he was predicting psychosomatic illness. He defended himself by saying that I was often in denial and maybe denial was not such a bad place to be. Hmmmm we had issues for years over that episode. With all the negative press about FMS though, I never report it as a dx or even share with anyone that I have it.

    2. Bev says:

      Hi I just had to reply to the question regarding fibromyalgia and rheumatoid arthritis. I have had various ‘complaints’ for years, I am now 50 and I was diagnosed with breast cancer 2 years ago which after treatment is now in remission. At the time of discovering that I had BC I had also gone to my GP with chest/rib pain which was excruciating. I was diagnosed with costochondritis. I had also previously been diagnosed with planter fasciitis. During my chemotherapy for BC I had a severe outbreak of pustular psoriasis on the soles of my feet and the palms of my hands. The chest pain had now moved and seemed to be more in my shoulders, hips and lower back…I returned to my GP who thought that I might have something called polymyalgia rhuematica! He told me that as I was having chemo he couldnt prescribe steroids, which is the usual treatment for this condition. I was given painkillers and sent away. The pain was indescribable and as I didnt really know what it was I was terrified. However I did notice that when I went for my chemo (every three weeks) I felt better and had some relief from the pain. Before a chemo session you are injected with steroids which are much stronger than predisilone. Ah ha I thought maybe it is PMR. Anyway to cut a long story short I finally got my gp to prescribe prednisilone and I felt great! So when I had finished chemo and the subsequent radiotherapy I expected all my syptoms to go away as I felt that whatever I had, had been exacerbated by my cancer treatment. This was not the case, and I kept returning to my gp with other ailments until in the end he referred me to a rhuematologist. The rheumatologist did a brief physical examination and then told me to reduce my steriods and to return in 3 months. I found it very difficult to reduce my dose of prednisilone as I my pain was so intense when I did. So when I returned and told him this he sent me for blood tests x-rays, scans etc. All my tests were fine so he told me I must have fibromyalgia and prescribed pregabalin (lyrica) I then stopped the predisilone after reducing the dose ( I was not told to do this by the rhuemy, but i had read that suddenly stopping pred can be dangerous. I then suffered the worst pain ever it was beyond horrendous! I started the pregabalin and hey presto one week into taking it my PAIN STOPPED!!! Hallelujah! hallelujah!!! I cried with relief and thanks but then (some months later) my feet and ankles swelled up and were extremely painful (at fist it was just one foot and I thought I might have sprained it or something as it hurt so much and was all puffy and red, so I went to hospital and had an x-ray..all normal!) Then the other foot swelled up and I thought this isnt right. I was also having extreme pain in my shoulder and neck …back to the rheumatologist who gave me a steroid injection in my buttock. I was to return in 5 weeks to see how I felt….’Great’ was the answer, all my swelling and pain had gone! My rheumy now told me that he thought I had psoriatic arthritis and not fibro or maybe a mixture of both! He gave me a prescription for prednisilone and told me that the specialist nurse would be in touch to talk to me about methotrexate!!! I havent started yet but I am rather nervous and dont want another blumin’ chemo drug! But after reading this site, I am now not sure if I have RA? My other symtoms after joint pain are fatigue, sleep disturbance, bloated stomach (constanly) Diarrhea, headaches, stiffness, tearfulness and sore and puffy eyes, oh and sore and swollen veins in my arms!(my Gp said this was phlebitis) Good grief I feel like a walking ailment book!

      • Hi Bev, it can be hard to distinguish between RA and PsA sometimes. The inflammation you have described (swelling, response to pred, redness, etc) would lean toward those inflammatory rheumatic diseases and not FMS. Nothing about your story sounds like an FMS description except that you are female and have pain. Stories like yours which I hear very frequently are discouraging because the best science says to treat early and aggressively – but doctors can make that impossible by sending you away for months at a time. You’re right – the pain is “horrendous”! And steroids and chemo help most people because they hinder the auto-immune inflammatory activity. The inflammation in your veins is possibly vasculitis – which is not very unusual with RA – and the treatment is the same methotrexate that is used to treat the RA itself. RA affects the whole body – any organ system can be attacked – often before diagnosis. I know you feel like a “walking ailment book” & I’m sorry, but all of these are common ailments caused by RA and being diagnosed with so many things like you were is also common. If you are worried about the mtx, you might want to read some of the pages here about it – there are about 25. Click on the Tags List dropdown arrow on the right and then click on methotrexate to see the list. Good luck!!

        • I hope my point was not lost: you are not alone and you are not an oddity. Sometimes, we can feel like it’s almost unbelievable. But I wanted to say that to us, it completely makes sense.

          • Bev says:

            OMG Kelly, thank you so much for your reply. This is the first ever site I have posted on and I have of course been on lots! I didn’t realise how much it would mean to have my symptoms and my ‘story’ heard! I have felt so alone and so ‘let down’ by the medical profession and even worse by my own family and friends. I know they find it difficult to believe I am feeling so ill when I look ‘so well’, but why would I make something like that up? In my story I tell about my difficulty in getting a diagnosis but I didn’t really go into the way I was treated by my GP and then the rheumatologist. How I was made to feel that I was a malingerer, a hypocondriac, and generally not really valued or listened to at all. By looking through the stories on this site I see I am definetly not alone!! It also seems that I have RA even tho my rheumatologist has reluctantly just changed my diagnosis from primary fibromyalgia to primary Psoratic Arthritis! I will follow your advice and read more on methotrexate before making my desision on treatment. Thank you again for your reply I cried with utter relief when I read it!!

            • Bev, I had thought I was alone in being treated those ways too – until I met so many other people who said the same things. Gradually, I realized the problem is systemic – with a lack of understanding of this disease – or family of diseases. It does make it even harder when doctors behave that way.

              I’ve known several patients who have their diagnosis changed back and forth between PsA and RA. The important thing about that is that you’ll be treated finally either way because both are known to be an inflammatory autoimmune disease and the treatments are similar. But RA is also more systemically desctructive so you’ll need a good doctor who can connect all the dots and help you watch for what other ways it affects you other than joints. They may be thinking PsA because of the outbreak of psoriasis on your hands and feet at one point. RA can come with rashes, but you can see why this a doctor would lean toward psoriasis. Sometimes, there are more complicated tests to eventually tell which one, but starting some treatment is probably still the first thing – and probably the same decision and the same treatment.

              If you would like to share your whole story sometime, you can email it to me and I’ll post it with the story pages when I have time. I get behind, but this project is very important to help improve our care. Take care of yourself, Bev. email: kelly@ rawarrior. com

    3. DebbieButz says:

      I was diagnosed with RA about 10 years ago. I had severe RA when I sought help with a rheumy and it was very hard to get the right combination of meds to control my pain and swelling. For many years I was doing as well as a person can with RA. About 3 years ago I was experiencing bad flares and was taking more pain meds to control the pain enough to get through my day just to do the basics! I finally decided this needs to be addressed, so I went to my rheumy and he checked my blood work, which was showing all was well, but I had all the tender points they check as active! Uggh, I didn’t know of fibro at this point. I started taking Lyrica for my fibro and it helps me greatly! I was able to get on with my life after a year of struggling. I must admit though it is very hard for me to tell the difference of how a flare feels between my fibro and my RA. My fibro flares more then my RA does. I have experienced with my rheumatologist that they do believe in fibro. Though I have a daughter who does not, she is a nurse. I love her, but do not feel support with her when it comes to my RA and definitely not with my fibro at all! So, I just keep how I feel to myself when it comes to her.

    4. Kay says:

      Hello fellow warriors, today I have decided to post on this special leap day and hope for peace within our hearts to understand this disease. Yesterday, I gathered the strength to leave my rheumy of 3 years (since orig dx) and at her suggestion to see a new doctor in case she ‘missed something’. So now my dx has another layer PsA with Fibromyalgia secondary with chronic pain and anxiety disorder. Remicade did not work after 1 year, Prednisone is only a temporay fix and now my new med is Celebrex which I am learning is a COX 2 blocker. Have taken MTX since the beginning 3 years now and can’t seem to eliminate or replace that one in the mix. Some help with control of pain is mandatory but the truth in the bloodwork with possibly show ‘anything we have missed’?
      Will keep update going and I welcome other Psoriatic Arthritis peeps to connect with and share. Best Regards.

    5. Beverly says:

      Approximately 20 years ago I developed swollen joints, chills, low grade fevers and fatigue. After about 6 months I saw my physician who, after a positive ANA, sent me to a rheumatologist. He told me “you definitely have fibromyalgia and probably another rheumatological disease, but it doesn’t matter which one because we have no cure”. What I now know was RAD went into remission with intermittent flares, but I had constant pain from the fibro and yes – they are definitely different. I have now developed full-blown, full-time RAD but I still have fibro and I know the difference. Although I was diagnosed with fibro at a time when most drs. thought it was just hype, I still feel I had better treatment than I have experienced since the full rheumatoid disease developed this past year. I have become thoroughly disgusted with the medical community (and I am an RN). With Rheumatoid Disease, I have found that as a patient I am not respected or believed – even by the so-called specialists. Most info from MDs or online websites conflicts. This site has provided more info than I have found anywhere else. I am sure that this disease will not be understood until the medical community respects their patients enough to ask about their individual symptoms and takes them seriously. It is well known that folks with Lupus all have varying symptoms of varying severity. It is time docs realized that rheumatoid disease is the same – different for each of us. It is time they threw out the old textbooks and started learning from us. Thanks for all the work you put into this site to bring us information Kelly. I wish everyone with RAD knew about it.

    6. My Rheumy told me my pain which resembles FMS is caused by the RAD. He said “Why would you call it FMS when you have RA?” “You have RA dear. This is what is causing the fibroid pain and giving you pressure points and tenderness even in your muscles.”

    7. Philip de Leon says:

      18 months ago I visited my general practitioner with a painful wrist. He sent me to a specialist who confirmed I did NOT have carpel tunnel, and sent me back to my GP. Fortunately his locum was sufficiently interested to take blood, and on getting the results suspected FMS. I was sent to a rheumatologist who had recently attended seminars in the USA and who had some very novel ideas (for this country). She had X Rays, MRI and blood tests by the dozen run in the space of a few days, unheard of under our National Health Scheme. Diagnosis – RA but masked by the painkillers I am prescribed for nerve damage in the spine. The result is that while FMS has NOT been ruled out, she is trying to eliminate the RA symptoms and discomfort so that other symptoms can be identified.
      I am grateful to her open mindedness, and her willingness to embrace American methods of treatment. I shall even endure the weekly blood tests, and the discomfort of the high doses of Methotrexate and Plaquinel, on top of everything else!I refuse to allow FMS, RA or my spinal condition to stop me from working and enjoying life – but I am grateful that I reached 60 before this really started.

      • I’m glad you’re getting good care Phillip. I hope you feel better soon.
        Do you know why the weekly blood tests? Maybe they are still looking for more clues? In the U.S., doctors do blood tests every 6-12 weeks to make sure the body is tolerating the methotrexate. Have they prescribed you folic acid – that is used to help prevent site effects from the methotrexate.
        I’m glad your doc kept looking. I think the current criteria for FMS describe it as muscle symptoms creating all-over pain with trigger points. When people tell me their pain is in a wrist, hands, or feet, it does not sound like it can best be described as FMS.

    8. Barb says:

      I was diagnosed with RA first by my Rheumy then a couple of months later I was told I also have Fibro. The way my doctors (an internist and a neurologist) explained it to me, is that my RA is an inflammatory immune disease while the Fibro is more of an issue with my nerve receptors and the way my brain is crossing my pain signals. They believe because of having chronic pain after a while the pain sensors in your brain may get over loaded and create a sort of misfire, causing a pain overload throughout my body.
      Good luck to everyone fighting these battles. I know some days it is difficult to stay positive.
      Here is a link to a site that has so good info as well.
      http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/fibroRA.htm

      • erika stoe says:

        I’ve been here at the library for 3 hours now. I am so disheartened to hear about the FMS – confusion?

        I just know I hurt all the time and my doctor said to me yesterday “we have the RA under control, your blood work shows good for RA, now we have to combat the FMS”

        So she is putting me on gabapentin. I tried Cymbalta and that made me crazy, suicidal, unable to sleep, constipated, confused and agitated.

        Somedays I just wish it was over and I don’t wake in the morning. I’m tired again. Alone, jobless, and tired. I will go walk my dog and perhaps watch a funny movie. Be well everyone.

    9. Tina says:

      I noticed my first sign of RA in my middle finger when I was 30. I also had widespread pain and muscle trigger points especially along my back and neck. I was not diagnosed with RA until last year at age 46! I have endured 2 neck surgeries the first one was 4 years ago that lead to a fracture over time I was told wear and tear caused it. So this April I had a cervical fusion of C4/5 and C5/C6 on the MRI the radiologist noted several synovial cysts at C2/C3 and facet disease throughout my entire cervical spine. The late diagnosis of RA has now disabled me and I do have the brain fog not sure if its from Methotrexate or RA probably both. I also suffer for depression and anxiety.

    10. Cheryl says:

      Interesting information. My mother and I were diagnosed with Fibromyalgia YEARS ago, when it first became a disorder or syndrome more doctors were considering. Mom now has rheumatoid arthritis. And, for me, joint pain is increasing with age, but I yet do not have the markers based on lab tests. I am seriously wondering if there isn’t a clear link between an early FMS diagnosis and a later RA diagnosis.

    11. Beth says:

      I was diagnosed with both at the same time on my first visit to the rheumatologist my family doctor sent me to. The swelling in my hand joints was obvious and I had come with complaints of pain and stiffness in them. He did an ultrasound of some kind right then and there and the joint inflammation was classic for RA. The doctor had my medical history and asked me some questions, that I later learned were symptoms of FMS. Without saying anything he started poking me gently in various spots and I jumped from the pain. He hit painful spot after painful spot that I didn’t know I had. I asked him how he knew where I would hurt so much. He told me because I had FMS, he could tell from my history and answers to his questions.

    12. Jane says:

      I think if a patient presents with FMS, CFS or any related symptoms, they should be tested for auto immune disease right off the bat. What was probably my fourth flare of nonspecific symptoms between 18 and 31 presented with symptoms similar to FMS and CFS in addition to joint pain but not much swelling. I also had RLS for about four months. My family doc did not take me seriously and said we might find out I have FMS at some point but I didn’t have enough pressure points for diagnosis then. Keep in mind, this was the late 90s. I did some research and learned that FMS was considered a somatic disorder so I did not complain again – even when I developed forefoot pain AGAIN at 38 and a callus that I still have on the ball of my foot. I never had IBS or female problems – which can be be regarded with somatic suspicion by some docs. Anyway, I don’t have FMS or CFS but I do have RD that presented that way early on. Diagnosed 16 years later. My rheum doc said if I’d showed the callus on the ball of my foot to my family doc at 38, it would have gotten his attention, but I didn’t. Kelly, think the medical establishment should change the decisioning protocol for immune disease lab work and move past the long established somatic stereotypes.

    13. Diane says:

      Well, where do I start….I have been diagnosed with Fibromyalgia and with Rheumatoid Disease gosh for over ..well not sure because my primary care Physician assistant … who I might add was the best listener in the world… diagnosed me due to not knowing what else to do and of course to give me the so called treatments…insurance yuck!! Then nothing was working so I had been checked for RD..Yup got that too. Ok Rheumetologist time, right away placed on dmards….got somewhat better, didn’t go away. Constant fatigue, pain..you know the story…no obvious joint swelling (lucky me). But the doc never could or wouldn’t do anything about the pain or lethargy…she fired me, because I canceled too many appointments. Too tired to get out of bed. Best thing that ever happened to me. I got a great doc now. He has done more for me in two visits than she did for me in 2-3 years – go figure. I still have the same amount of pain and fatigue, but he is trying. Is it Rheumatoid, is it Fibromyalgia….or both …I say who cares if they can’t fix either. Okay enough of the sarcasm. Yes, I believe I have both, but don’t understand why the treatments do not work………Not enough dollars in the research departments??? No I don’t understand Fibromyalgia. I understand Rheumatoid disease because of my own reading and research and of course from you!!! Just cuz we understand something doesn’t mean we don’t have pain, fatigue, etc. even with so called treatment……Must be a good day today!!! got this written. Thanks Kelly for all you do!!!!!!!!

    14. Jill Tate says:

      Hi,
      I just saw my Rhemu. last week, I usually see the PA since I was considered mild RA, if there really is a mild. I was diagnosed 2 years ago, but I had signs of this 10 years ago. After visiting with the specialist, he didn’t no why everything had gotten worse so fast, neither did I. He did an ultrasound on my wrists and found the right wrists showing RA and the left clean! Anyway he wanted to put me on Cymbalta 30 mg. Somewhere my husband who was taking notes missed the word Fibromylgia. I received the doctors a few days later and this was now written in as part of my diagnosis. RA still being first! I was surprised that he hadn’t really talked about it with me or (because he has a thick accent from India)I didn’t understand what he said. Luckily I was on Cymbalta for 4 years and went off on my own before the diagnosis of RA. Wonder if there is more current information on Fibro/RA.

    15. Pierette Martel says:

      I was diagnosed with R A from xrays as my blood work was fine. About six months into seeing my Rheumy he told me I was developing Fybro. From what I have read about each of these things I have had both for years. He prescribed gabapentin for the Fybro and I was miserable and had more pain so I went back on the naproxin. I always feel pain and am trying to learn the difference between my RA pain and the Fybro pain. He seems to know his stuff but I do not feel I am part of health care at all.

    16. Jacqui says:

      I was very interested to read your article on Fibromyalgia as after not responding 100% to my latest biologic – guess what I have Fibro! Yes the biologic is helping fairly well and I am pleased to be taking it – why should ” left over pain” and other symptoms suddenly become fibro ? I still believe the extreme tiredness, joint pain etc. is R.D. I am interested to hear your views on the book you are currently reading on the matter. Thanks Kelly for all the research you do for all us RA Warriors.

    17. Leigh Ann says:

      I had positive labs with my second pregnancy (daughter turning 14 soon!)–along with gestational diabetes (I mention because of the autoimmune factor). I also have Hashimoto’s Thyroiditis–diagnosed about 20 years ago. I had a lot of joint pain and minimal swelling, along with intermitttent low grade fever for years as well as lesions on various mucous membranes but my labs were back to normal. I got in to see a rheumatologist who, despite my normal labs, put me on plaquenil–he did not discount those symptoms but also told me I had fibro and gave me Cymbalta. In between my visits I lost a bunch of pigmentation to Vitiligo so clearly I have a ton of autoimmune crap going on. I stayed on the meds for a couple of years–I feel like the Plaquenil got me in some sort of remission (YAY!) for the RA (?) and the Cymbalta got cost prohibitive so I gave it up. It worked really well for those symptoms, though! Lately I’ve been having some problems with my feet, but I’d rather “white knuckle” it as long as I can than go back to the doctor.

    18. Joanne says:

      I was diagnosed with fibromyalgia in 1991, when really no one had heard of it and it was not a recognized disease by almost no one. I was crippled up by neck spasms and I found a rheumatologist who was really old school and practiced out of his house. It was my first experience with trigger point injections. It never when away completely, but I was a busy Mom at the time and soldered on.

      By 2005 I was 50 years old and crippled by neck spasms, far worse than what I had in 1991, now I have a pain management doctor who prescribed Lyrica, so new my insurance company would not cover it, until about 6 months later. I would soon be taking Cymbalta for depression, i was taking it well before it became popular to prescribe it for Fibromyalgia.

      I guess the point of my story is that its 25 years since I was diagnosed with Fibro and still there is no real effective medications on the market and some doctors are still arguing if Fibro is really a true illness or just some woman who are hypochondriacs.

      Of course I now also have a plate load of other autoimmune diseases: rheumatoid RD, gout, sjogrens, DDD, to name just the main ones.

      Thank you for your web site, at times its the only thing that keeps me going.

      Joanne

    19. Kathleen says:

      Thank you Kelly for your amazing site. It’s been incredibly helpful for me. I’ve had RA for 2 years and take enbrel. Today my rheummy examined me and informed me it’s not RA pain in my elbow it’s fibromyalgia. I highly doubt that as the elbow pain is exactly the same as my hand,wrist,ankle and feet pain. There is no doubt about my RA my blood work was very clear. She prescribed prednisone but I want nothing to do with that drug I already feel like a walking pharmacy. I try my best to arm myself with every bit of information I can read on this horrid disease. I recently suggested I wanted planquinil again because without it my hair was falling out so bad. The doc shrugged her shoulders and said she didn’t think it’d work. I’m very happy to say after 2 months back on planquinil my hair is no longer falling out. We must be our own advocates the doctors try their best but I think they’re often clueless and just throw more meds at you in the hopes something will work. Thanks again for all you do and best of luck to all my fellow warriors

    20. Jeanne says:

      My husband just forwarded me an article stating that fatigue can be caused by a number of medications including statins, high blood pressure meds and antidepressants among others. Although I appreciate his sharing this information even though I could have written the list myself, I would like to emphasize to him that “simply” having RA, fibromyalgia, chronic pain, sleep apnea, and restless leg among other ailments trumps the offending meds. Are you aware of articles that specifically link RA and FM with chronic fatigue? I’ve been known to sleep for 20 straight hours, get up for two hours, and then go back to bed for another eight or ten after a long weekend of company. Please note, my article-forwarding husband is a saint who, without complaint, takes care of everything and anything while I sleep.

      For all the great work you do for us, Kelly, I thank you!

      • Dear Jeanne,
        I’m so glad he’s so supportive about the fatigue. Fatigue is a definite symptom of RA / RD and can be a sign of inflammation or other disease related issues. I discuss how important it is for docs to pay attention to this in my new book.
        But as the article said, fatigue type symptoms can be a side effect of many meds also. It can be hard to untangle. There are a couple posts on fatigue & I’d make sure I covered my bases first on things to help then also ask a doc to help. Start with checking iron and vitamin levels. Let her know if there is any other symptom such as shortness of breath.
        Take good care of yourself. I think these might help > http://rawarrior.com/tag/rheumatoid-arthritis-fatigue/

    The Post

    Comments (118)


    What do you think?


    Would You Like Free Email Updates?
    Stay in touch with RA Warrior.
    We respect your privacy. Your email address will never be shared.