Neurology or Rheumatology specialists for Fibromyalgia?

[Bethy1962]

Given that Fb has been linked to the central nervous system are fellow sufferers comfortable continuing to be seen/treated by Rheumatologists?

[Hidden]

Hi Bethy,

The Rheumatologist I see is is a specialiast in Fibro so I have to say I am happy seeing him. I also just been diagnosed with RA so I guess it's a good job I like him because I'm stuck with him now

x

[Bethy1962 in reply to Hidden]

Thank you reni73.

I dont see any specialists in relation to my Fibro (Secondary Fibro), my primary problem is Spondylosis of the spine so I see a (cant recall the word) errrr, bone specialist....but the Fb is very debilitating and impacts in a very negative way on my life (especially Fibro Fog and fatigue), thinking of asking to see a specialist for the Fibro and wondering which way to push, Rheumatologist or Neurologist? I know that the spondylosis has narrowed my spinal cord and impacts on nerve messages, so feel that Neuro may be the way to go given evidence relating to a link between central nervous system and Fibro.

Thank you, gentle hugs, BethXXX

[pinkblossom]

Hi Beth

I saw a rheumatologist last Friday mainly to see if I have carpel tunnel,we talked about my fibro and osteo and like my partner said after the appointment..she didn't tell me anything I didn't know already! she is however making me an appointment to have some conduction test done on my wrists to confirm CT,but I didn't come way with more info that I didn't know,she just said ..oh yes I do agree with your Dr that you have fibro,sounds to me like reni73 is lucky and has wonderful rheumatologist,I did expect a bit more from my appointment,I think I would like to make an appointment to see a neurologist though...Julie xx

[Bethy1962 in reply to pinkblossom]

Thank you for your reply Julie...I suppose it comes down to luck as to whether the Rheumtologist we see is a good one or a bad one, pretty much the same with GPs. So little is known about Fibro... in the long term it cant be good to keep on treating symptoms without deeper understanding of root cause and if the root cause is the central nervous system then we should be seeing Neurologists.

I have had Fibro for 11 years and although I suffer greatly with the symptoms, the big problem for me is not being able to understand Fibro and even more frustrating is that the Specialists/Experts/Doctors are unable to explain/understand the cause of this life changing, debilitating disease.

Gentle hugs, BethX

[Hidden]

The Rheumatologist I see is brilliant, diagnosed me with Fibro, CFS/ME and RLS. Went through loads of meds until right combination was found and touch wood all conditions are well controlled now.

I haven't seen a Neurologist at all, because my Rheumatologist has dealt with it all really well and answered any questions that were worrying me at the start too.

My Rheumatologist's specialist area is Fibromyalgia, so she is really clued up on all aspects of Fibromyalgia. I am very lucky.

((hug))) xxx

Libs

[Bethy1962 in reply to Hidden]

Sorry Libs, replied in wrong place....Darn fibro fog!!! (((X)))

[256musa in reply to Hidden]

Hello how does one find your Rheumatologist? Could you email to [e-mail]

Much obliged

[Bethy1962]

Thank you for your reply Libs.

Think its great that you have found a good Rheumtologist, Fibro sufferers need good support and understanding in order for our symptoms to be treated accordingly.

I am leaning towards Neurology because of the connection between Fibro and the Central Nervous System. Rheumtologists do seem to have a deeper understanding of Fibro, historically they are the ones with the most experience of Fibro as it has been regarded as as that type of condition... but with this new information regarding the CNS connection it may be wiser in the long term for Fibro sufferers to see Neurologists?

I want there to be an understanding/explanation of why we have Fibro, why it exists and why it seems to be reaching epidemic numbers...only then can it be treated or prevented.

Gentle hugs and thanks for your reply, BethX

[LindseyMid in reply to Bethy1962]

Most neurologists do not realise that Fibro is their "kind of thing" unfortunately.

[NWG23]

It kinda worries me that I'm not under any doctor or specialist. I've had fibro for at least 12 years but other than my GP, massage therapist and latterly a nutritionist I've not seen anyone. I wonder if I should ask for a referal, though at the moment depression ,stress, anxiety & lack of sleep are my main symptoms. Pain isn't too bad unless I get no sleep cos I now have a very sedentary job.

[Bethy1962 in reply to NWG23]

Thank you for your reply.

Sleep deprivation not good, you are bound to have stress, depression etc if you are not sleeping well.

The rheumtologist that I saw only clarified the Fibro diagnosis that I was given several years ago, he referred me for physio and that was it, never saw him again.

Fibro has so many symptoms all needing a different type of approach, must be hard for Drs to decide what needs to be focused on. Getting on top of the depression is important...its like the chicken and egg question...are we depressed because we have a chronic illness or are our Fibro symptoms worse because we develop depression? Think a multi disciplinary approach needed...where to start, where to go and back to the question Neuro or Rheumatology, LOL!

Gentle hugs, BethX

[chicme]

ive been trying to cope alone have done for about 12years its got to the point now ive hit rock bottom been really ill for a month chest pains breathless really depressed been in hospital overnight my heart is ok i crushed a load of tablets last night i took a lot not all i mused have past out feel really crap today. spook to a doctor on phone last week trying to tell how i feel all he said was right you've got this you've got that what do you want me to so where do i go from there no support when i really really need im heartbroken

[Bethy1962 in reply to chicme]

Your reply made me sad, sounds like you are very down, can get that way myself. Perhaps you could ask round neighbours etc and find out what their GPs are like and consider changing yours? It doesnt sound like you are being treated very sympathetically by your current GP....I don think they know what to do with us Fibro sufferers, but some are better than others.

There are phone services for people who are very low, worth ringing to get things off your chest.

Are there any Fibro groups near to you?

I hope you can get the depression sorted and after that speak to your Dr about a referral to a Rheumatologist or Neurologist for support and treatment of your Fibro.

There are Fibro chat groups on Facebook, I belong to a few, it helps me feel less alone.

Sending you gentle hugs and love,

BethX

[Bethy1962 in reply to Bethy1962]

P.S; Worth speaking to NHS helpline about tablets you have taken, some can be very harmful even small amounts, phone someone please and tell them what you have done. Gentle hug, BethXXX

[sue57]

I was diagnosed with FMS by a rheumatologist but because of the other meds I take he couldn't prescribe me anything and discharged me from his clinic!! XX

[chicme]

thank you all for your help & comfort cant get in docs till next Tuesday but i intend to get everything on paper how i feel an let him read or i be crying all time he is one of the better ones .and i had all the paper work for appeal been so worried thank u xxx