NRAS
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Rheumy appointment today

Finally got to see rheumy who said i have fibromyalgia and not RA. I do have swelling but in soft tissue and not joints even though it seemed to be in joints to me.

Not happy with been fobbed off with Fibro as i already had that diagnosis and my health has got alot worse.

Had bloods taken but no tests.

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So sorry Yorkshiregirl doesn't sound like it went how you wanted it to go and I do believe once fibro has been labelled trying to get them to except anything else is nion impossible!. So what has she said is causing the inflammation in soft tissue as my understanding of fibro doesn't cause any inflammation.

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Even when my doctor was referring me she said you will just get a fibro diagnosis....and thats what i got. No explanation for the swelling and i didnt have pain in all the areas typica; of fibro.

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I wouldn't be happy with a fibro diagnosis either. Some doctors seem to keep investigating to eliminate other possibilities but some don't. If you rheumy / GP aren't going to keep looking then perhaps you should consider finding new ones. Even if you do have fibro it sounds as if you are going to want a specialist who strives to find the best possible treatment, something that works. And if you don't, then surely most rheumys etc. readily acknowledge that auto-immune conditions such as RA can be difficult to diagnose. It's a tough one but hang in there and don't stop searching and pushing for a diagnosis and treatment that feels right.

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Maybe they are right that its not RA but fibro does not fit either..its just a cop out. Dont know what to do next,need some time to consider options, its all so exhausting.

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I know exactly how you feel having the same difficulties as you with diagnoses. We have to keep going and pushing for answers as its the only way we will get our health back. What did doc say about them private blood tests you had done?

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Very interesting findings but complicated..i will pm you

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You may be doing these things already but here's what I'd suggest: document your symptoms being scrupulously honest with yourself & not trying to fit them to any particular disease. As the weeks go on, weed out any that are mild and only occurred once. After maybe a month or two knock it into shape e.g. make sure it's very clearly expressed.

Then write a letter to your rheumy saying that you are not happy with the fibro diagnosis and are still concerned that you may in fact have a progressive condition that is not being treated and is therefore getting worse. (Assuming of course that you do still feel that way). Enclose a summary of your symptoms but make sure the whole thing is concise - I think that less is more when you are trying to get heard. Send a copy to your GP too.

If you don't get the response you want then ask for a second opinion, your GP or PALS should be able to help with that.

This is what I'd do. I've had a hell of a fight to get good treatment though the diagnosis wasn't such a problem. There might be some pitfalls with this way of doing things that I haven't thought of, hopefully someone here will pick up on them if so. My own experience is that while you are trying to get heard you tend to feel that it's hopeless but as long as you keep going and are very reasonable you get there in the end.

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Thanks for the encouragement, it seems like an uphill battle at the moment

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I would ask for a second opinion; you sometimes get only soft tissue swelling; but pain and exhaustion and until you are treated with an anti rheumatic (even if mild) it will continue

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when he said the swelling was not in my joints i didnt understand that as it is in my joints but the softer side if that makes sense.. like on my elbow its on the inner side.

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Have you read the national fibromyalgia association website. It's just it really is a very exhausting, painful illness and the site explains it very well. Did they press the tender points and get a positive result, if not I would take the evidence they mention on the site and show them. Keep plugging away as it can take a while to get a proper diagnosis.

I do know people that have fibro and it's as debilitating to them as RA , but has a lot less treatments it appears. I think though I often try to put my symptoms into boxes and they don't always fit, so i would write them down, keep a pain diary and take pictures as we said before, for them to see your swellings. When they are swollen go to the GP and show them that day, then they can refer their findings to the Rheumy.

Good luck, it's very difficult to get a diagnosis often but keep strong and keep going, thinking of you xx

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Hi again Yorkshiregirl44,

I have been looking into these three important deficiencies-

Magnesium, B1 (Thiamine) and also B12

they have similar symptoms to Fibromyalgia, (and Hypothyroidism too.)

Hubby and I now use the B12 patches.

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