consultant?: Hi. I have been under the... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,346 members66,394 posts

consultant?

donnabrain profile image
11 Replies

Hi.

I have been under the lupus unit for 16 years but was recently discharged.

I have a condition called antiphospholipid syndrome but they believe this is sufficiently controlled for me to not go there anymore.

I believe I also have RA but they say not.

And I was previously told I had Sjorgrens, but apparently its not mentioned in my notes.

I paid for a private appointment as I had many unanswered questions.

The man I saw explained why I don't need to be under the lupus unit anymore and said my dry eyes and a lot of my other symptoms are due to fibro, which I was actually told I had years ago, but had forgotten about as the APS diagnosis took over.

Anyway my question is, if .ost of my problems are caused by fibro, who would look after that?

Written by
donnabrain profile image
donnabrain
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Dizzytwo profile image
DizzytwoModerator

Hi there and welcome to our group :) The quick answer to your question would be your GP.

I see you have left your post unlocked to this community only. For privacy reasons you may like to think about locking this abd you future posts. If you need help with this or anything else please just ask xx

Momo

donnabrain profile image
donnabrain in reply to Dizzytwo

thank you, yes, I would need very plain instructions lol.

Technothicko

Dizzytwo profile image
DizzytwoModerator in reply to donnabrain

Take a look at this link it will show you how to lock a post. You only have to do it when you start a new post.

healthunlocked.com/fibromya...

If you need further help pls ask x

Dinkie profile image
Dinkie

Good question- who indeed looks after us. Fibro used to be diagnosed by rheumatologists but it seems more and more GPs are cutting out the middle man and diagnosing fibro themselves. To be honest when I was diagnosed I was told “we don’t treat it in this hospital so I’m discharging you back to GP” from then on I was on my own.

Through research I discovered Guys and St Thomas’s fibro clinic and eventually got a referral there. Took two years a letter to my GP and a melt down to finally get it. If you can get to London well worth it. Only one appointment but you would see several people they then put together personal plan for you and send it to GP.

Good luck and let us know how you go.

donnabrain profile image
donnabrain in reply to Dinkie

Thank you for your in depth answer.

Yes I can very easily get to London, in fact I went to London bridge hospital ( private) yesterday.

I have spent all day on settee lol as I was in so much pain this morning from his prodding and poking and very sleepy too, but I am just coming round properly, and have prepared a nice chilli for dinner and poured myself a glass of wine.

Sorry to hear you had to do that before being treated properly.

I didn't know there was a fibro bit at St T,s.

Was under st T,s for a long time.e, first at sleep disorder u it and then lupus unit.

In those days I struggled with journey, but I moved five years ago and the journey is better.

I have been at Guys the last few years but now discharged

Dinkie profile image
Dinkie in reply to donnabrain

There is a page on their website about the fibro clinic. I was so glad I went - even to just be believed and have the pain and symptoms acknowledged was a great relief.

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to Dinkie

There is also an NHS fibro clinic at the royal London hospital for integrated medicine

Omegadeep profile image
Omegadeep

Your GP since there are few options outside big cities.

JayCeon profile image
JayCeon

I'd think it takes a good rheum to diagnose fibro after all the various pains etc. have been cared for and excluded (e.g. neurologist, gastroenterologist, psychiatrist, sleep lab, orthopedist plus any small things, in my case allergologist, urologist). One rehab.-med. (similar to orthopedist) tried to take over, cos my GP is often neglectful and overburdened, but she bungled it completely, cos she had unhelpful diagnosis-ideas and her treatments were very painful. The anaesthesists weren't helpful either, cos everything I took had very adverse effects, only amitriptyline helped a bit for a while, but I'm all the better for leaving it. Cannabis is still on the list there, but I don't really want to try or go there anymore. So I've been in the hands of my GP again and just have to keep on my toes and bug him all the time, which is working OK now. Plus one of my psychiatrists from the sleep lab, who is very helpful with physical ideas and starting work again.

To sort out if I really have Sjögren's I'll additionally be trying my 2nd rheum again, after the clinic rheums thought it not so important. And I trust my angiologist most for my blood vessels, cos she found things the cardiologist didn't. So I do use almost all my specialists as I think necessary and helpful.

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Yes agree with dizzytwo book an appointment with your doctor, my current doc diagnosed me , no rheumatologist was involved , hopefully you have a doctor that is clued up on fibromaylia and supportive, I still read here that some people’s doctors are still dismissive of the condition or show no empathy, it didn’t happen for me straight away with my old doc but this one I’ve got now is good, The forum here is a good supportive group to be part of xx

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Many health boards are now encouraging diagnosis of fibromyalgia to be made at GP level. Your gp can arrange all necessary tests to eliminate other conditions, and a referral should only be made to rheumatology or other consultant where there is a query over tests/diagnosis

Some rheumatology departments no longer accept referrals for possible Fibromyalgia diagnosis

You may also like...

Consultant or not?

Tramadol). A lot. My wife wonders if I should go private, but is it worth it? Should I ask to see...

Initial consultation

Gp Diagnosis not Consultant

ESA 2 years ago and was put in a support group so no need to look for work . I have recently had...

CONSULTANTS/SPECIALISTS APPOINTMENTS

was put under a rheumatologist who was the person to diagnose me with fibromyalgia. I have had 2...

Rheumatologist consultation tomorrow

inflamed so quickly now :( I don't know WHO I am anymore. I feel so frustrated and scared... i feel...