Finally got my diagnosis

[Dolphin100]

Seen a private rheumatologist tonight. Im glad I spent the money but I'm annoyed at the nhs for not helping me....

[Cat00]

How did it go?

[Dolphin100 in reply to Cat00]

He was so good. Highly recommend him. Listened explained everything in detail was an hour and 20 mins but so worth the money. He then checked me over and ruled other stuff out. I had prepared all the copies of scan results and everything so that helped. He loved my organisation that helped me get the most out of his time. He then said in his opinion I do have fobromyalgia as everything pointed to that. Xx

[Cat00 in reply to Dolphin100]

Ah ha! Obviously I'm not happy you've got fibromyalgia but it must be satisfying to feel vindicated at least. I wonder what your GP will make if it!

Has he given you advice about what to do going forward?

[Dolphin100 in reply to Cat00]

It's okay. I knew I had it I just needed confirmation which he gave me. Gp just brush it off and they don't action letters anyway. I had a wonderful gp who understood as she had back problems but sadly she retired then passed away last year. He has said to do mindfulness and counselling which I'm waiting for. Just to keep going and try to manage day to day as there is no main treatment. I'm on a lot of meds so I would like to taper some down but I won't know if it will work. To do swimming and pilates to help condition my muscles and help me. Obviously I'm on a lot of meds that make me gain weight so I'm trying to reduce this as well. Xx

[Cat00 in reply to Dolphin100]

Yes I went from anorexic to overweight on Pregablin and Gabapentin feel much better not having the added complication of side effects and thinking of the harm they may do long term. I'm still on Amitriptyline but I'm a terrible insomniac and I hardly sleep as it is so I suspect I'll be on that for life!

The only thing that helps me is exercise preferably everyday and as intense as possible. And obviously minimize stress as much as possible.

[Dolphin100 in reply to Cat00]

I know what u mean I struggle as I'm in pain daily and it never stops. I am walking and doing gentle stuff as I can't run or do anything intense as my back won't tolerate it. Xx

[Cat00 in reply to Dolphin100]

I have a slightly wonky spine and it goes into spasm occasionally, very fustrating and painful, I feel for you!

[Dolphin100 in reply to Cat00]

Oh gosh. It's hard isn't it. Xx

[Cat00 in reply to Dolphin100]

Yes! Bags of pain we are....

[Dolphin100 in reply to Cat00]

Very true

[Arymretep]

I was referred to a rheumatologist by my Dr , did your GP refuse to refer you that you had to go private.

At least you know what you have now and though there is no cure you know what you are dealing with, I’ve had fibro for many years and am in pain every day, I also have arthritis , and can’t take meds because of stomach problems, looking after ourselves, Rest, as much exercise as we are able to do, walking is good, I find deep breathing very helpful, and best of all pacing , hope the counselling helps, good luck