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Fibromyalgia Action UK
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Diagnosis changed from RA to Fibromyalgia what are the symptoms?

So my diagnosis has been changed from seropositive Rheumatoid arthritis to fibromyalgia and I am confused. I was given a booklet from the Arthritis care which says on its first page it is a psychological illness.

Last year the consultant was adamant I had RA but I failed on the treatment because it made me too sick and now they are saying it's fibro.

I'm not sure how similar the symptoms are.

I have stiffness and pain in my hands, elbows, knees and toes. I can't bend my knees without pain and it's like someone is prizing off my kneecaps. Same with my elbows. My hands are stiff and the joints tender and I wince if I pick anything up.

I'm also very stiff in a morning and so tired I feel like I am permanently drugged.

The change in diagnosis seems to be because on visual inspection they cant see swelling in my hands except I can't get any of my rings on. They told me that was just because I was getting on (I'm 47) and people with fibromyalgia have body dismorphia and imagine things that aren't there.

To be told it's all in my head when I was told last year when I wasn't even thinking about any such illness that I had RA I find weird.

I have two friends with fibro which I think makes me feel even more miserable because with the best will in the world. They are ill when it suits them. I've known then bunk off work in the morning and be teaching an exercise class in the afternoon. I am certainly in no fit state to do that. Is there any physical basis to this disease or is it just a case of a dumping ground for anyone who doesn't quite fit the model patient so you get a mix of genuinely ill people and others?

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Hi Heizbells. 😥I understand how you must be feeling. Sometimes I don't think they know what they are saying. Didn't you have any tests to say you had RA in the first place? For them to come to that diagnosis.

Unfortunately ,I think a lot of us are in the same ship. But it's a comfort to know we can chat to our friends on here.

I've been struggling myself lately from pain, the unwellness and exhaustion. Doctor gave me a sterile injection yesterday in the hope that it may pick me up. But Im confused as you probably are. I was told I had RA and then Fibromyalgia. What can we do? I'm actually now going privately to get a second opinion. They say slot of the symptoms are similar. But I've been told you can't get inflammation with Fibromyalgia. Im not too sure if this is true.

I wish you all the best. We have a lot to cope with. But there are lots of friends here for you day or night.

Take care

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I was told similar about inflammation gillybean1968 I'm also sure as anything that the symptoms of RA are not the same.. If I'm honest, I think they realise what trouble the NHS is in and put all of us 'no hopers' in the same bucket so we will never be taken seriously and treatment will be minimal.. Well, it makes me angry, it's the only plausible answer I can see for this mess..

Don't blame you, going private.. I'm having to do the same for a diagnosis.. It's going to cost money I can't really afford but it's what desperation leads us to..

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Hello hellzbellz

I am so sorry you are feeling so confused.

If you click on this blue link it will take you to our mother site where you can take a look at the most common symptoms of Fibromyalgia fmauk.org

Unfortunately because Fibromyalgia is an invisible illness sadly some people do jump on the band wagon and claim that they have Fibro when they don't.

I was on a bus not long ago and two women were talking about Fibro. One woman said she had it, didn't explain the any of the actual symptoms properly and then the other one said "oh I've got a bit of that".

It is not possible to have a "bit" of Fibro. Everyone who has Fibro does suffer to very different degrees and we all have varying symptoms.

Some have very little pain or fatigue and are able to carry on a fairly normal life whereas at the other end of the scale are people like myself who live with constant severe pain and fatigue and struggle to get through each day. Some are even bed bound.

Do you mind me asking who diagnosed the Fibro? If you haven't seen a Rheumatologist I would strongly recommend that you ask your GP for a referral to see one.

There is one test that a Rheumatologist can do which is to press various trigger/tender points on your body and then the reaction you have will give the Rheumy a good idea if you have it or not.

Please feel free to ask us as many questions as you like.

Suddenly getting a diagnosis of Fibro can be very confusing and the way you are feeling is entirely normal even though very upsetting for you.

Wishing you a peaceful day

Lu xx

PS Something to bare in mind is that Fibro sufferers often have what is called a "flare". This is when all of our own usual symptoms are heightened to a huge point. Flares are mostly caused by stress and can last anything from a few days to weeks or even months.

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Thanks Lu. It was diagnosed by a rheumatologist on a second opinion. The hospital I am usually under diagnosed RA and I have been treated as such for a year. They based it on blood results and physical examination. I failed on four dmards however and suddenly they said my treatment options there were limited so the second opinion was to enable me to get the RA drugs I needed. However this registrar on a very brief exam said nope you haven't got RA and the blood results mean nothing. You don't have swelling in your fingers you are imagining it (that would be me and the other consultant)

The thing is the hospital couldn't do enough for me until I started failing on the meds. It was at this point the original consultant started changing his mind too and saying some of it was fibro. My GP thinks it's a convenient get out clause for someone they don't want to find with more expensive drugs

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Surely seropositive rheumatoid arthritis means that the blood tests - ie the RA factor has come back elevated and you have RA? The swelling can't necessary be seen by the naked eye - have they actually done MRIs or x-rays?

The symptoms you describe do fit RA but then again they can fit fibro as well.

I've been suspected of having RA (as well as Lupus, Lyme and MS... but that's a whole different very long story) and it was ruled out with scans and blood tests.

As for fibro being something 'in the mind' ... I wish it was! I really wish it was my imagination, it would be so much easier!

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Fibro tends to be the diagnosis when all the tests have come back negative and it does tend to be the dumping ground of conditions when doctors are stumped. However, their ignorance does not make your pain and fatigue any less, it is a real illness.

Fibro is recognised by the DWP and (most of) the NHS. These massive government bodies cannot be wrong, surely.

Is there any way you can see your first rheumatologist or even ask for a referral to a different one, even a different hospital? It does seem that once you are labelled with fibro all of your symptoms are linked to it, even when patently they are not.

Fibro does accompany many autoimmune conditions, it could be in your case that you have RA AND Fibro.

I do hope you manage to get a proper recognition of your symptoms and some answers too.

Xx

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My neurologist said Fibromyalgia is a disorder of the central nervous system, it is very real and I for one am so angry that people are mistreating you in this way, no one really knows the cause there is a lot of speculation, the one thing I can tell you is that Fibromyalgia is NOT in your head and if the medical bods that see you are telling you this complain to PALS as soon as possible this is negligence on their part. All best wishes. Lou xx

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Totally agree!

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Hi Helzbells

If I remember correctly your blood test results did show that you had seropositive Rheumatoid arthritis? So it really is strange that they are ignoring this fact? I often think the two can be mistaken and the *healthline website says:

*Can fibromyalgia cause joint pain?

Fibromyalgia pain can appear in the joints and muscles, but fibromyalgia does not damage your joints the way that arthritis can. It also doesn't damage your muscles or other soft tissues, although it is known to intensify pain. This can also potentially worsen arthritis pain.24 Oct 2016

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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Thanks for that. It seems although I test positive for anti-ccp which you only do if you have RA the doctor said as I wasn't exhibiting a large amount of inflammation then I can't have it and the bloods mean nothing

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Seems like you just can't win.. I feel for you Helzbells and hope something comes right for you soon.. Take care, hugs to you, gentle ones of course.. ;)

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