Who should i be seeing? : Hi! I've... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Who should i be seeing?

Zee92 profile image
20 Replies

Hi!

I've very recently been diagnosed with Fibromyalgia and I was just wondering what sort of clinicians other Fibromyalgia sufferers see? Ive only seen my GP who diagnosed me and I've not been provided any further support after the diagnosis so I dont really have a clue who i should be talking to about managing the condition. Is it just the GP i should be seeing or should i have been referred to a rheumatologist or neurologist?

Thank you in advance! 😊

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Zee92 profile image
Zee92
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20 Replies

Hi Zee92 , welcome, it depends on how knowledgeable your doctor is with fm, how they diagnose you, if a doctor knows how to examine you with all the pressure points blood tests etc, then yes a doctor can diagnose you.If you feel you need more help, than your doctor can give you , can ask to be referred to a pain clinic, a rheumatologist will only examine you to see your pressure points and pain, same as your doctor.

Good luck.

Zee92 profile image
Zee92 in reply to

Hi!

Thank you so much for your help! Due to covid I haven't actually seen my GP and he hasn't done any pressure points but I have had an MRI on my lower back which came back normal along with all of my bloods that came back normal aswell. After eliminating associated illnesses we've ended up at the diagnosis of FM however I'm a little skeptical due to not being referred and mainly just speaking to the GP via zoom or over the phone! Definitely think i will push to see a rheumatologist to get a definitive answer! Thank you again & all the best! X

in reply to Zee92

Yep definitely get to see a rheumatologist, that’s a new one on me diagnosed over zoom.

Cat00 profile image
Cat00 in reply to

I thought pressure points had been taken out of the diagnosis of fibromyalgia?

dippystuff profile image
dippystuff in reply to Cat00

They have, they are no longer considered an accurate/appropriate diagnostic test.

in reply to Cat00

You may well be right?, just going on my experience, if that is the case, do they just go by long term pain, and how do they diagnose arthritis etc now?.

Zee92 profile image
Zee92 in reply to

I think thats how I've ended up as being diagnosed with FM as I've had ongoing problems with widespread pain in knees / elbows /back /neck for years along with muscle spasms numbness and tingling so once they've rulled out arthritis and other conditions. They did lots of blood work im like a pin cushion 😂

in reply to Zee92

My rheumatologist was a contortionist 😂, she pulled me here there and everywhere, prodded all sorts, I ended up in tears, so I’m glad it’s not used now, I was a pin cushion too 😳

Cat00 profile image
Cat00 in reply to

There are so many things that can contribute to a diagnosis of fibromyalgia. I have chronic migraines, insomnia, hypermobility, IBS, interstitial cystitus all of which are "commonly" found in patients with fibromyalgia, not including the unexplained muscle pain etc patient history I would have thought was part of the diagnosis so a GP could look up all of that. Arthritis you should be able to see on a scan.

in reply to Cat00

I feel for you, I have all of what you have, I didn’t think about it like that, but yes you are quite right, we all learn from each other, personally I am glad that it doesn’t happen anymore, as my rheumatologist was brutal. Thank you for enlightening me.

Cat00 profile image
Cat00 in reply to

Funny the pressure point thing never had any effect on me? I tend to get pain in neck, collar bone and thighs and they never really prodded them!

in reply to Cat00

May be we should be teaching them, lol.

Cat00 profile image
Cat00 in reply to

Yup! It's a very fuzzy diagnosis really..

Sakirb profile image
Sakirb

Hello,I was diagnosed 20 years ago privately when nhs didn’t recognise as illness .

They did extensive blood tests especially for B12, vitamin d, magnesium and gave me tablets to take immediately.

From my research in most cases b12 and vitamin d are main issues and resolves a lot of issues.

As someone else suggested worth checking with rhemuatolgy . I suggest you read a lot yourself and get info and see if any of them worth persuing . You usually guide the Gp’s with this illness.

I was put on depression tablets for better sleep but not sure it helps much but still taking them as the illness and tiredness makes you depressed :(

Hang in there and do you research don’t give up.

Zee92 profile image
Zee92 in reply to Sakirb

Hi!

Oh bless you, good you persisted and managed to get a diagnosis 20 years ago! Its a shame its still not taken seriously as it can be debilitating!

I've had all my bloods taken which came back normal however i have had low b12 levels before which resulted in lots of numbness and pins and needles 🤦🏼‍♀️ other illnesses have been ruled out so that's how I've been diagnosed with FM.

I've had a good read on most things but now finding speaking to others with FM much more beneficial and makes me feel more normal 😂

Do you feel the tablets help in the long run & have you found any alternative treatments you think work? X

Sian10 profile image
Sian10

Hi I read a book called living with fibromyalgia by Christine Craggs-Hinton which I found very helpful and have put in place some coping mechanisms happy to chat take care x

Zee92 profile image
Zee92 in reply to Sian10

Thank you! Ill definitely get this ordered! X

Cybergirl profile image
Cybergirl

A Neurologist lovely. Although they aren't as well educated in this condition as you would hope.

Cybergirl profile image
Cybergirl in reply to Cybergirl

Unless your bloods come back with an inflammatory marker a Rheumatologist won't be suitable.

Zee92 profile image
Zee92 in reply to Cybergirl

Thank you! I saw a neurologist last year as I had a numb patch on my knee which lasted for months during and after my pregnancy but the nerve conduction study came back normal! So they never found a reason. I've had inflamatory markers in my bloods before but then on repeat tests they have been normal so I have no idea 😂 thank you for your help x

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