Post- diagnosis help

[Lisa21]

I was dx last November, and went back to see Rheumy today. Basically said they could not give me anything to help me and in future I should think about going to a pain clinic as Rheumy's do not deal with Fibromyalgia long term.

I think it is probably because they do not know anything new to help me, or maybe it is too much for them to want to deal with.

Does not really give you any support does it? Has anybody else had the same thing said to them?

I'd like to know.

[LinzWorld]

I just replied to your other post, but yes.

You need to see Fibro specialists and at consultant level there are few of them. If you're in the south-east and can't afford to go private at all (if you can afford it in any way, I do recommend it) then you need to get a referral to the FM Clinic at Guy's Hospital for medication suggestions. In the meantime, if you have a good GP, you can get decent info - e.g. from the FibroAction website - so you can go and discuss medication options for you to try.

You also need to work, with your GP, and by yourself, to get the other stuff that can help, such as hydrotherapy, nutrient supplements if needed (e.g. if you have a vitamin D deficiency), myofascial release, physiotherapy and exercise. Also CBT and counselling may be useful.

Getting effective treatment for Fibro in the UK is a lot of work and requires paying for at least some of it.

[Lisa21]

Thanks for you reply.

I do have vitamin D deficiency, and I had a blood test today to see if my levels are OK or not. I am still seeing the Physiotherapist and have been working at strengthening exercises and have tried Acupuncture. I am suffering from tiredness and my concentration is not very good at all, and all she could tell me is to NOT fall asleep and try reading a book! Not that easy to do!

I did go to the Pain Clinic and did CBT sessions on many occasions there.

Will my G.P be able to refer me to this specialist clinic, and is it NHS?

[matthew]

[gillshutt]

Most rheumy's don't know squat about FM except how t do the tender point test hence the lack of help... hand us back to the gp who knows less and probably doesn't really believe in it

[LinzWorld]

The FM Clinic at Guys is NHS and it's on Choose and Book so your GP can refer. The waiting list varies from the 18 week target to a bit longer though (so it's 4-6 months for a first appointment and then 9-12 months wait for followups). If you want to be seen sooner, you have to go private (2 weeks wait average).

[shazq]

My GP sent me to see a Rheumy at my local hospital.
Once DX with fibro most Rheumy`s will discharge you and your GP will take over things.

My Rheumy did send me to a Living with pain course at my local hospital.
Although my Rheumy said he would always see me if i need to be seen, you will find that most refer you back to your GP for on going treatment.

[LinzWorld]

Even the FM Clinic has to do that to some extent because you can't see them very often. So it's important to be very prepared for you appointment so that you leave with lots of options and all the info you need to then work on your treatment plan with your GP. You can then go back to the clinic for more medication suggestions if the first ones don't work out or if you hit a plateau.

Even seeing Prof Davies privately, he prefers to work with the GPs - that way the GPs can do the prescriptions on the NHS (if they will) so saving you money.