Fibromyalgia Action UK
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Diagnosis of fibro how long ?

Hi guys my name is Simon 48 had RA for a year now, well diagnosed for a year had it longer but thought it was all in my head. I believe i have fibro also but doctors just passing me from specialist to specialist and in im not getting the right results or finding out what is wrong with me. My arms are numb and tingling my left leg vibrates had nerve conduction been back twice now but say i dont need op on arm and now saying it could be neck or back. So fed up with going round in circles how long before they actually start the fibro route seems to me they look everywhere else but not the obvious ! My elbows hurt my knees hurt shoulder blades chronic fatigue forgetting all the time does this sound like fibro to you ? also got burning hands ichy skin list goes on and on the doctors all know this my rhummy says my ra is stabilised so clearly its something different it is driving me mad meds for ra are not working or helping me any advise guys ? Struggling lost job everything now. 6 kids system sucks. Thanks for your time regards Simon.

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Hello and welcome to our lovely forum.

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Love and best wishes

Lesley

FMAUK

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Ok thank you.

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Hi Swanky ,

Welcome to our forum. I'm sorry that you're in such a lot of pain, and that you seem to be going round in circles trying to get to the bottom of why you're suffering so badly.

In order to be diagnosed with Fibromyalgia, your Dr or Consultant, usually a Rheumatologist, but sometimes an Neurologist, has to carry out a lot of tests to eliminate other disorders, and when this process is complete, and the tests show up normal, then a diagnosis of Fibro is given. This can sometimes take years.

I know it must be frustrating for you, but take comfort in the fact that you have a Rheumatologist looking after you, many of us don't get that far, and have to deal with only GPS who are reluctant to refer them.

I hope you get a break soon, and that you can at least get some proper pain relief.

Take care.

GP. 😊😊

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Many thanks greenoeace for the reply.

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Oh I'm sorry you are having a tough time of it. When I got diagnosed I had to ask the neurologist / rhem (I was in hospital at the time) if it come be fibro (I told them my mum had been doing research and wondered if it could be linked). But it took years to get to that diagnosis- maybe try being forward (if you haven't already). I would definitely check out the site as it helped me a lot :) Best of luck, life does get better xx

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Thanks humbug I'm back to the gp later today to explain my leg vibrating syndrome and groin pains so tired driving me nuts rhumey moved me to every 3 months now as my ra they say has stabilised so if it has I clearly have something else wrong numb hand and fingers etc vibrations in legs fatigue it goes on wish me luck but I know in my heart it's just another wasted trip.

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Hi Swanky

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I am so truly sorry to read that you are having problems getting some answers, and as Greenpeace says the best referral you could ask for is to a Rheumatologist as they usually do the Fibro diagnosis.

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 ken been with my rhumey for a year now that's what I mean on how long does it take I'm just pushed around the hospital to different specialist as they can't figure me out 😔 thanks for the reply

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I ran a poll on this last month and the average time was up to 2 years! So it can take some time I am so sorry to say. Good luck my friend

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Hi Simon Swanky Welcome to our wonderful forum, I'm sure you will love it and find it invaluable chatting to others who are going through the same as you, at different stages of their lives with fibromyalgia.

I'm sorry you are in so much pain my friend and although we are not doctors, I can tell you that the reason for the time it takes to get a diagnosis of fibro, is because it's symptoms mimic so many other conditions, Lupus, Limes Disease, MS & like you say RA. All of ghese things have to be eliminated first, normally by a series of blood tests, then if nothing shows up, you are usually refered to a specialist and from my own experience & others, the length of time which this happens very much depends on your doctor..Because you already have RA I would imagine this is why it's taking so long because the symptoms are very like fibro symptoms. It has not been unknown for people to get a wrong diagnosis of either, although it's not uncommon for people to have both conditions, along with other ones also.

Arm pain is quite common in fibro & it is something that can stem from neck & back. I get the same pains you describe with the numbness, pins & needles etc. Something also common for Fibro sufferers to have is, something that is called Peripheral Neuropathy.

I'm sorry you have lost your job and 6 kids, gosh I bet they keep you on your toes. It must be very difficult for you. You have come to the right place and will gets lots of useful information. I look forward to chatting with you on the forum

Peace, luv n light

Jan xx

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Jan thank you x. Yeah it's not easy at the min but must say this forum is a massive help and hats off to the developer of this app all of a sudden you realise that you are not alone it's not in your head and just keep pushing. This has had a massive impact on how I feel in my head thank you app developers and thank you to all admin and all you wonderful helpful people out there. X Simon x

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Oh you are very welcome Simone. I know the forum is a life line for so many people that have struggled and felt alone for so long. It truly is amazing when you can see that its not just you. If this site was available to me all those yrs ago it would have changed my life. As you say, It plays such a massive role in how we feel and just to be able to understand it and accept it. GPS or specialists don't offer you that when they shove a fibro leaflet in your hand & when I was younger, it was like, off you go & get on with it. So yes the site and health forums are invaluable. I'm so glad you are enjoying it my friend.

Luv Jan xx

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Hi Simon - I am so sorry for what you are going through. Fibro is a horrible disease. One of my bright spots with it is that it won't kill us, but that doesn't help if we wish sometimes it would, huh?

Oh my gosh - With six kids that is even harder. I wish I had some words of wisdom for you but the best I can offer is a welcome, and take a look at the mother site (Creativeness has the link), and see if they can help you with getting benefits and some support..

Sending gentle hugs your way..

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Thank you CaerylUSA X

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Update guys since my second nerve conduction the other day I have just received a referral to trauma and orthopaedics cant believe how quick I got this letter ! Hopefully getting somewhere now.

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Hello Simon

I just wanted to wish you a very warm welcome to our lovely forum :)

I was diagnosed with Fibro & ME when I was 20 in 1980. I also have osteoarthritis, Hypermobility Syndrome, PTSD, depression and severe anxiety.

I have been a member of this forum for 5 years, and it is very obvious that it can take many years to get a definitive diagnosis of Fibro.

My advice to you would be don't give up.

It would be great if you kept us updated with your progress.

Please feel free to post as much as you like and ask as many questions as you want to.

Take care of yourself

Lu x

Administrator

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Hi Lu,

I will thanks everyone

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Quick update guys now had the appointment at hospital with the Otho had X-rays etc sore the surgeon they are now saying I will have to go back for MRI scans so more months of waiting :( just goes on and on hope you are all having a good day and pain free or at least a day where you don't feel to bad x

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