RA and secondary Fibromyalgia

I have been diagnosed and undiagnosed with secondary Fibromyalgia several times. The first rheum I saw tentatively diagnosed FM. However, when my RA was under control and when my vitamin D levels were normal, he rescinded the diagnosis. Current rheum told me I did have FM but I failed the 18 point pressure test because I didn't have the sore points. I saw an ortho consultant who said that my FM diagnosis is "rubbish". She said she abhors it being given for supposed unexplained pain in people who have confirmed diseases like RA. I have always thought the same because my "Fibromyalgia" is not an issue when my RA is settled and when I'm otherwise well with normal vitamin D etc. Also, I have joint damage, so OF COURSE my calf muscles will ache.....they are over-compensating for eroded feet and ankles! The other thing is, aren't muscle aches and pain are a symptom of RA in itself?!

I do feel a lot of people get fobbed off with a Fibromyalgia diagnosis. I'm curious as to other people's thoughts.

16 Replies

  • I agree about the fobbing off. None of my healthcare team has ever diagnosed or suggested fibro to me. But this might be because I find myself playing down my pain levels a lot of the time because I so don't want this label. I feel it would get in the way of thorough investigations because it can be such a convenient get out.

    Having said this I think a lot of people with forms of inflammatory arthritis and also with thyroid diseases, Lupus and MS do often suffer from unexplained pain described as Fibro. I am no scientist but it does make sense to me that chronic illness will influence our brain's responses to pain in many ways. So I am confused!

    I also believe some people have much lower pain thresholds than others. This is nothing to do with courage/stoicism I feel - it is just about the different way pain signals transmit from person to person. For example if you have loss of sensation in your nerves because of neuropathy then inevitably pain is received differently to the perception of somebody with an extra sensitive peripheral nervous system.

    I described to a friend with CFS how the surgeon had gauged out the infected tissue under my naval without giving me entinox 6 weeks ago and she was horrified and said she would have screamed and told them to stop. It was extraordinarily painful but I bore it somehow because I assumed I was expected to? It did give me nightmares for weeks afterwards and then my body went in to meltdown with a stroke like episode and the neurologist agreed with my feeling this was a response to earlier trauma. So is this psychosomatic response or not? Would some rheumies call this Fibro perhaps? I'm really not sure what constitutes a heightened response to pain or an undereaction either.

    But if Fibro is considered a heightened response as I've been led to believe - then the cause of pain may still be going unrecognised and that worries me.

  • Muscle aches are a big part of R/A so I cannot understand how Fibromyalgia can be sat alongside of R/A. I was told this a long way down my diagnosis of R/A and it makes me wonder if they just attach this label when the drugs taken aren't doing what is intended anymore. I very much feel like a guinea pig as so many drugs have been suggested now the Methotrexate no longer works as well as it did.

  • My understanding was that conditions like CFS and Fibro were diagnoses of exclusion, therefore, any other cause of pain/symptoms have been ruled out. My GP told me (off the record!) that she's never seen a person come out of my rheum clinic without a diagnosis of Fibromyalgia. I think perhaps rheumatology are missing the point.

    I don't even bother to discuss my pain with rheum anymore. In my last appt, she told me she received the report from maxillo facial surgeon post-surgery. Despite reading that one side of my jaw is so damaged, they couldn't access it and other side is nearly as bad, she asked if it "hurt"!

  • Unfortunately, it seems that giving a diagnosis of fibromyalgia stops health professionals from thinking any further. I notice that I get muscle pain: when I'm reducing my steroids, when my joints hurt, after more exercise than usual. I expect this and don't mention it to the health professionals because I too am afraid that a diagnosis of fibromyalgia will obscure my other problems in their minds.

  • My latest rheumy (yet another locum) has just diagnosed me with "symptoms of mild fibromyalgia". It seems pretty meaningless to me. For a start, FM is only supposed to be diagnosed when there is 'unexplained' pain, and my pain is quite obviously explained by widespread bone degeneration, erosions, joint deformities, tendinosis, and muscle problems caused by hypermobility. I already have diagnoses of aggressive multi-site osteoarthritis, hypermobility syndrome and some kind of tendinopathy. Some kind of inflammatory arthritis has not yet been ruled out. I may or may not have FM too; it hardly seems relevant. And yes, I do feel like it's a cop out.

  • Ive only had one rhuem app so far (2nd tomorrow) but i went in with stiff hips, hands and feet and some tiredness (have 3 boys, 2 with autism) was given dx of cfs (a dx my sister fought 8 yrs for) and fibro. Been Wondering how?

  • I'm really not being flippant at all, I'm in earnest - surely any mother of 3 boys, 2 of whom have special needs, is going to be exhausted?

    If you're not 100% happy with the diagnosis, then do ask for a referral to another rheumy, you have the right to do that and all of these diseases - CFS, fibro, RA - can take quite a while and a lot of self-advocacy to diagnose securely.

  • Thanks. I don't think it helped my dx being a mum :( A friend has moved Rh. and thinks I should too. I'm just not good with pushing for care... We shouldn't have to be pushing and we shouldn't have to be ahead of our consultant.

  • No, we shouldn't have to push things on ourselves. And I rather expect you're quite busy enough without that. But I suppose I've been hanging around online forums long enough to have seen many people go from limbo land to a diagnosis they agree with and, more importantly, effective treatment that really helps, thanks to sticking to their guns.

    If you do decide to change rheumys and all that then you'll get great support here I'm sure.

  • Thank you!!! Certainly just reading everyones experiences helps (been here quietly bar inital freak out post about 9 months)...

  • This is an interesting topic. My rheumy has never said I have FM, but I had a pain specialist tell me it was clear as a bell when I saw her one time. When I mentioned this to my rheumy, he didn't say anything. In fact, when I told his nurse before he came into the room, she immediately said "that's not a dx that I'm willing to put down on your forms unless he tells me to." Then when I had to see my GP for my yearly, I asked him about it and he said "I'm not convinced that FM is a real disease but even if I did, I'm sure that you don't have it. You have multiple reasons for your pain, and FM isn't one of them." Everyone acts like FM is a dirty word or something. Maybe that's good thing after what I've read here.

  • They do. I think that's why it feels worrying: it's as if the doctors are saying "We think it's all in your head, but it would be rude to say so, so we'll call it fibromyalgia..." :(

  • Yup my GP pretty much said something similar, said it was psychological when actually it's nuerological. Not very nice for people who actually have Fibro either.

  • Unfortunately neurologists don't acknowledge Fibro or CFS as neurological conditions either. A GP friend told me how these conditions are perceived by the medical profession quite early in my rheumatoid journey and so I feel now that it's a lazy diagnosis.

    Even if a GP or rheumy or neuro believes a person has a psychological component to their pain - then this surely still needs addressing? After all mental health issues are as real as and can be just as debilitating and even life threatening as physical diseases. So on all levels many doctors are letting their patients down with this diagnosis I feel.

    I did read somewhere that most people with a diagnosis of primary Fibro will turn out to have some kind of autoimmune disease - whether thyroid, adrenal, arthritic, dermatological, gastrointestinal, neurological - whatever. Secondary Fibro may be somewhat different but I still worry about it because pain is there for a reason surely - it's real!

  • I first got told by Rheumy that Fibro was the least of my worries when diagnosed with sero neg RD but then 12 months later being told it is all fibro and osteoarthritis and that I have to live with it. Waiting for my re referral appointment with Rheumy so they might change their minds again yet.

  • This is an interesting conversation. I went to see my Rheumy last week after having a particularly difficult time with my RA (sero negative). I had worked in the yard and done more taxing activities and was feeling extra discomfort. After explaining my extra discomfort to the doctor, he whipped out a questionnaire for fibro (unbeknownst to me) and quickly calculated that I must have fibromyalgia instead of RA. After that, he was not willing to listen to me at all. He added it to my chart without considering my past history, or the fact that I had only 3 "tender points" instead of the 11+ required for FM diagnosis, or the fact that I have had visible swelling of fingers and toes that responded well to steroids. I am so frustrated and will definitely seek a second opinion. We must advocate for ourselves since we know our bodies much better than anyone. I AM FIRED UP!!

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