consultant?

[donnabrain]

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?

[Dizzytwo]

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 in reply to Dizzytwo]

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

Technothicko

[Dizzytwo 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]

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 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 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 Administrator FMA UK Staff in reply to Dinkie]

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

[Omegadeep]

Your GP since there are few options outside big cities.

[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 FMA 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 Administrator FMA 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