Saw consultant this morning. Changed ... - Fibromyalgia Acti...

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Saw consultant this morning. Changed my diagnosis from RA to fibromyalgia said it's in my head!

Helzbells
Helzbells

Saw rheumatology registrar at a different hospital this morning. He said despite a positive blood test for RA and a year of treatment with toxic drugs in his opinion I don't have RA. I have fibromyalgia. That I don't need any medication and once people stop telling me I'm ill I will feel better. I just need to forget all this and go and live my life like a normal person. He can't see the swelling the other consultant could and there is no evidence of inflammation.

I'm feeling completely devastated. My appointment was to get me biologics and now he's saying I have nothing wrong with me. I went to the GP last year as my thumb locked and I couldn't move it. Then my knees developed fluid on them and I couldn't move by elbows. He said to me today he didn't need me to remove my jeans for him to see there was nothing wrong.

I just needed a decent night' keep and to see a aheink of needed.

I'm completely bewildered. I'm in so much pain and now it's no we aren't going to improve your treatment we are going to suggest you have no treatment at all.

16 Replies
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HiddenThis reply has been deleted

Hi Helzbells I am taking it the fibro diagnosis still stand I am sorry to hear you are going through this please take a look at our mother site for more information.

fmauk.org

On the homepage there are some pinned posts in blue these also have information on symptoms and treatments

Hope this help good look my friend

That's terrible to say that to you.So he's saying all us on here should forget about the pain&we will feel better.I won't put what I think he is on here but it starts with a w & end in a r.

W****r.

I wish people like that had to live with our pain,then they might understand.

Keep ya chin up.

Xx

Hello Helzbells ,

I read your post. It is common to have fibromyalgia alongside other illnesses too? I have Ra and take methotrexate. I have few clinical signs of ra and a normal blood test for months too.

I would go and discuss what the rhuematologist said with a trusted Gp? And if necessary ?you can request a change of hospital or at the very least a second opinion? It seems very old fashioned to suggest that fibromyagia is all in the mind? The nhs website gives a whole list of symptoms caused by fibromyalgia? The current thinking that it is causes by an oversensitive central nervous system ? an overactve pain response and is definitely not all in the mind?

I hope you find a more modern and reasonable consultant in the future. Best wishes to you xxx

Sky-dancer
Sky-dancer in reply to spzgirl51

I'm glad you said this spzgirl51 I posted earlier about being told by a pain management consultant that fibromialgia is a secondary condition due to constant/chronic pain signals from a primary condition ie: RA, OA or in my case JHS getting mixed up and so FM is the result..

Helzbells So sorry you have been treated like this, it's awful.. If it were me, I'd complain but that's not everyone's choice, or at least demand another referral to a different consultant.. Horrible man.. I was told 14 years ago I had FMS and my GP later said it was the 'new bad back', not real..

Mdaisy
MdaisyAdministrator in reply to Sky-dancer

Hi Sky-dancer

Great minds think alike! - I just said the same about secondary Fibro to RA

Emma :)

Mdaisy
MdaisyAdministrator in reply to spzgirl51

You're right spzgirl51

Helzbells s it is possible you have got RA with secondary of Fibromyalgia.

I would definitely seek a second opinion and as above the NHS website on Fibromyalgia was updated a while ago with the help of Fibromyalgia charities and evidence that came to light. I don't know if you saw my post about the BMJ Podcast maybe the Dr who said this to you needs to listen to it!

Here's the link;

healthunlocked.com/fibromya...

Unfortunately, we have all had the 'it's all in your head' from some dinosaur medics however, please try not to be too despondent there are good ones out there......it's just finding them. You may consider writing a post for 'Fibro Friendly Health Professionals' and see if others mention anyone in your area and go from there.......

Wishing you all the best in your journey to find an understanding healthcare professional and to getting the correct diagnosis, so you can get off this roundabout of hospital appointments!

Take Care

Emma :)

Sorry to hear this, but i m afraid it's common it seems different Drs and rheumatologists have different ideas,. I was diagnosed with RA like you and on meds for many years and it was. under control then I saw a locum rheumatologist who I. Her wisdom. decided that it wasn't RA because my bloods didn't show inflammation and no swelling but osteoarthritis and Fybro and took me off my meds , my GP says. I. Her opinion I have RA , there's such a thing as serotypical ? RA which doesn't show up in blood tests Apparantly,. I'd go back to your GP and have a chat, you could ask to see a different rheumatologist if your'e not happy, good luck and take care

No printable reply I have no words XXX

That is terrible, what a way to treat a patient who is in pain and wants help.

I think I would ask my GP to send me for a referral to another consultant, preferably at a different hospital. It could be that your RA is in remission at the moment and of course taking the medication to suppress your symptoms will affect the results of any blood tests.

Fibro often accompanies other conditions, particularly those of an autoimmune nature. It doesn't mean you "just have fibro" it is likely you have fibro AND RA.

The DWP and the NHS both recognise fibro and it can be managed even though it can't be cured. People take medication for their symptoms, they are not left to just get on with it.

If you are stopping the RA drugs, make sure you are doing it slowly, but I advise the best thing to do would be to speak to your GP who knows you better and be guided by him.

I do hope you get a satisfactory outcome, I feel cross for you that this man's uncaring attitude has left you bewildered and upset.

Kay

Hidden
Hidden

He sounds like a caring individual!!!

I hope you have a nice GP you can talk to about this. Unfortunately some doctors do come across like this, if they can't see proof, it can't possibly exist.....which is unhelpful to the patient and comes across as bloomin arrogant!

Sounds similar to what happened to me. I have had OA since 2011 but I was diagnosed with zero neg RA and fibro March 2014 and given toxic drugs which caused severe side effects. The rheumy tried 3 different DMARDs meds on me. I never saw the same Rheumy twice and April 2015 I was told by another rheumy that I didn't have RA as I had no inflammation. This was said without a blood test or scan (how they saw synovitis which led to diagnosis 2014) and I was told my pain and swelling was all down to fibro and OA. My gp was told I had refused treatment and I should see a counsellor for depression. I was speechless and really upset and confused. I wrote a letter of complaint to PALS, patient liaison service at the hospital and they set up a meeting with another Rheumy and the matron. They made loads of promises of tests etc but I only ever got a scan of my hands. Six months later in Jan 2015 I saw another rheumy who tried the same DMARDs again which again had the same side effects. I was then discharged Aug 2015 back to GP because the rheumy was retiring! I just feel like I was used as a guinea pig and they can't be bothered with me now. So although I have diagnosis of fibro and OA I still believe there is something else wrong. RA can be controlled with drugs but it does not go away. I have no faith in doctors because I get no help from them only the offer of anti depressants when Im not depressed!

Hi Helzbells

I am so genuinely sorry to read this and it sounds absolutely appalling. I have replied to you on your other post with details of how to make a complaint if this is what you want to do my friend.

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

Dizzytwo
DizzytwoModerator

It's no wonder our belief in the medical profession is in doubt when faced with this lack of underdstanding.

Some of my lower back problems that showed up on both x ray and MRI scans are stenosis, severe OA And scoliosis. Throw in 30 years of fibro and bad feet problems it would be obvious why i'm in pain and need a wheel chair.

The consultants report to my GP read something along the lines this lady just needs to exercise and walk more !! If it wasn't so bad it would be funny.

I think I would ask for another opinion or if you can afford it get a private one done. Been left with such uncertainty and confusing diagnosis can only be adding to your health problems . I am sorry your having to go through this. xx

Mo

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