Rheumy keeps saying everything is due to fibromyligia not my RA & I don't think I even have fibromyligia

Been diagnosed with RA just over a year but I had symptoms for at least 2 years previously. 4 years ago had diagnosis of underactive thyroid and docs made me believe all symptoms were due to that.

The RA is everywhere, no joint has been missed!!! I'm on leflunomide (off MTX as awful side effects). My rheumy is convinced I also have fibromyligia- I've done the info session and I don't think I have it. So now apparently all my pain is from the fibromyligia and not RA!!!! My painful swollen joints have not changed since since diagnosis other than more joints joining in. Last may I was told that if I didn't improve then they'd go down the biologic treatment route. Well things haven't changed!!! I can't walk far due to hip and knee pain, I'm taking codeine every day without fail. In Nov I had steroid injections into my knee and was told that to be in the amount of pain I was saying I'm in then my knee should be swollen like a football!!! My joints all swell but it's not always visible to others. I can see their swollen. My rheumy has been amazing until they decided on this fibromyligia diagnosis so I really don't know what to do or how to say I don't agree with it!!! I was allowed any more steroid injections this week as she wants my wrist and finger joints scanned. I dont understand why they dont scan my kness and hips as they are always extremly painful. Then I may be put on hydroxychloroquine. She's also just prescribed amitriptyline to help with the pain at night and to help me sleep undisturbed.

Should I see another rheumy? I have question the fibromyligia to her and she says that it's because ur body become sensitive to pain???? Also I'm unable to work which is super hard for us as a family as I've always worked!! Thank u for reading my post xxxx

10 Replies

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  • I'm confused how they jumped from an RA diagnosis to fibro. Are you seropositive? I can only imagine your frustration and I would probably seek out a new rheumatologist myself.

  • I've still got the RA diagnosis but now they've added in fibromyligia everything is blamed on that.

    Yes I think I may have to see new rheumy. Such a shame as up until this it felt like she was bending over backwards for me.

  • Hi, Fibromyalgia foe get lost in the symptom list and you will find a lot of lovely peeps on here who also have RA and Fibromyalgia and some of us have many illnesses besides

    Fibromyalgia in its own right does NOT cause SWELLING and with the Fibromyalgia effects the muscle and fibres of your body and sometimes is you wont know which on it is lol, so relax and stay with us all will be explained in time. If you have any questions speak up lol.

    Philip

  • I have lots of friends with fibromyligia and I think my symptoms are completely different. I don't have any muscular pain at all. My joint pain sometimes make that area hurt too. Eg hip joints pain sometimes in whole hip area & ankle and feet pain makes my whole feet tender and swollen. X

  • That's fare enough, only us the know our own body, I hope you find what you need.

    Philip

  • Sounds confusing🤔What does your blood results say? Have you had the CCP result? Are you getting any treatment for the thyroid imbalance? On what results was the FM diagnosis made? Sorry if I am intrusive, just trying to understand:)

  • Hi thank u!! My bloods don't always show inflammation as I'm seronegitive RA. Thyroid levels all within normal.

    Fibromyligia diagnosis based on fatigue and pain. I don't think I have any symptoms of fibromyligia other than sensitivity to light & sound which can also be due to RA. I don't get pain in my muscles it's very much in my joints. My fatigue has improved slightly and doesn't always keep me exhausted all day everyday. School hols I can feel more tired as don't get quite as much resting time.

    I'm so cross that I'm not being listened too and my pains are being brushed aside. I've hobbled round town this afternoon for a couple of hours and kept topped up with painkillers but I bet the after effect will kick in and I'll be sofa bound tomorrow. It's no quality of life at all. I understand it all takes time but I'm the one suffering and missing out with family.

    Your not being intrusive at all. Glad of any help!!!

  • Hello again Ragemez81,

    Sorry you're having such a rough time:( A strange thing that I have followed on this forum is that the sernegatives all too often have trouble with the RA meds especially mtx. What meds are you on? When your RA diagnosis was made was the CCP measured? This gives a quite sure indication of RA together with typical symptoms.

    Have you had a thorough Thyroid test? The normal tests often do not pick up on deficiencies that still give symptoms.

    You could also insist that you get an MRI of your hands. Even if the knees are painful as also the hips and feet, the RA changes are usually first seen in hands and feet. MRI is the most accurate, you can't go wrong.

    I am also serro-negative with a positive CCP. I was diagnosed a year ago with an aggressive RA with fatigue and terrible brain fog. Because of many reasons I wanted to first check alternative treatments. AIP diet LDN together with important supplements decreased my inflammation and pain 80% in three months. The brain fog and fatigue were gone. I'm still working with my diet hoping a modification would take away the rest of the symptoms.

    Very often I think those who suffer from RA find themselves in a situation like yours with a lot of pain and fatigue and doctors have done their best ( hopefully) to treat symptoms with different meds, in vain. I think this is really a place to try to modify your diet, elimminating at least the most common inflammation triggers gluten, dairy and sugar. It is really quite amazing how often it decreases inflammation and pain.

    LDN might be something worth looking into.www.ldnresearchtrust.org. Go

  • I have the opposite problems to you - my aches are all in my muscles! I asked my rheumatologist directly if I had fibro and he was evasive, saying that the amitriptyline he'd offered to prescribe would help if I had. I honestly don't think they know.

    Not wanting to take any more daily drugs, I accepted a prescription for Zacin cream which seems to be helping. (Either that or something to do with tweaking my diet/supplements.) I'm painting ceilings this weekend anyway!

    Have you come across LDN (low dose naltrexone)? It is often useful for symptoms of fibro or RA, and not just pain.

  • Mixed connective tissue diseases often misdiagnosed as Fibromyalgia. If you respond to steroids its usually inflammation. xx

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