It's Official: Well - my hospital... - Fibromyalgia Acti...

Fibromyalgia Action UK

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It's Official

Spirit profile image
16 Replies

Well - my hospital appointment yesterday was very tiring but also drew a line under the rest of my life.

Got the head honcho who told me everything they had looked at and that appart from the fact that I was slightly hypertensive and was walking like a cripple (he has a very appropriate sense of humour) that I was possibly the healthiest person on his books.

He then told me what we had been waiting to hear - defo Fibro - not that we didn't know but they had to say it for it to go on file and for me to have the door opened to everything else.

They will change my drug protocol as I've been referred to the pain management team. This will include couselling, hydrotherapy, and physiotherapy. This team also have responsibility to assist in disability claims and occupational therapy so I think I stuck pay-load. Feel totally blessed that I was referred to such a good team.

Just wanted to share x

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Spirit
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16 Replies
lynr profile image
lynr

Lovely news ,glad you have got lots of support.Good about the counselling too.

I found the hydotherapy and physio and a good , best wishes to you xx

Spirit profile image
Spirit

Oooh - you've had hydro - what exactly do they do with you?

Sarah-Jane profile image
Sarah-Jane in reply to Spirit

Spirit it is lovely. I asked my doctor to refer me to the physio, which he did and I asked them - they arranged it for me.

To walk into a warm pool of water up to your underarm [I'm 5'8"] that took the weight off every joint and allowed me to move more freely than I have in months - I wanted to keep walking! I was told off and to take it more gently - I was trying, but it was so nice! However, do take their advice or you can damage yourself and afterwards go home and relax. You will be very tired. Unfortunately I have to time mine just before work! You can imagine how much I yawn after that!

If you can get it, do!

ClareWales52 profile image
ClareWales52

I`m so pleased for you hun, I wish I could find a GP who understood, even though I was diagnosed by a consultant, at a pain clinic, I feel I`m banging my head against a wall! We have had an awful couple of days and am now having to fight to receive the benefits and help I`m entitled to. I feel so low and my emotions are all over the place, pain is bad and just feeling like I cant cope with anything right now. I cannot believe there are so many of us suffering this thing and the different effects it has on each individual is so frightening. I hope you get all of the help you need now to improve the quality of your life .

hugs , Clare xxx

Sarah-Jane profile image
Sarah-Jane in reply to ClareWales52

Can you go to CAB? Just read that someone else got great help from them. Good luck.

Soft hugs

ClareWales52 profile image
ClareWales52 in reply to Sarah-Jane

CAB is on my list hun, I have agoraphobia and other probs too and reply on my hubby to take me where I need to go, Am seeing another GP on monday and praying he listens and dosent give me `that` face when I say fibro, even though I was diagnosed by a consultant, at a pain clinic, I feel I`m taking 1 step forward and 3 back. If I can get the help I need with my fibro , maybe mine and my family will finally have some quality of life, will keep everyone posted, hopefully any help/info I get can help others in this situation xxx

LindseyMid profile image
LindseyMid in reply to ClareWales52

Have you seen the FibroAction page on benefits? We'll put more info up when we get the time, but I would recommend reading that page and checking out BenefitsandWork.co.uk

fibroaction.org/Pages/Benef...

Spirit profile image
Spirit

Clare - I can't tell you how touched I am that you are thinking of me whilst you are having a bad time yourself - thank you sooooo very much <3

ClareWales52 profile image
ClareWales52 in reply to Spirit

I`m just so happy for you hun xxx

Twiglet profile image
Twiglet

So pleased for you, I know what a relief it was for me to finally know I wasnt losing the plot :) Hope you get all the help you deserve. x

Sarah-Jane profile image
Sarah-Jane

Wonderful news!

Louise09 profile image
Louise09

That's great! Well done :-)

L xxx

LindseyMid profile image
LindseyMid

It sounds like you've got a great pain management team there. I know there has been a lot going in Wales in terms of training on Fibro, so hopefully they will be good.

As you said, the official diagnosis opens doors and means you can move forwards. Fibro is a chronic condition, so you can never make it go away completely, but it doesn't have to be a life sentence of pain. Try to stay proactive, work with your healthcare team and take responsibility for your healthcare and hopefully you'll start to see improvements soon.

Pat16 profile image
Pat16

So very pleased for you. I have never been referred anywhere for my Fibro. Perhaps it was because I was diagnosed 15 years ago and I am now sixty nine. Trouble is now I cannot get out on my own and so if I was referred I wouldn,t be able to get there. (I also have trouble sitting so can,t travel far) I think I must have been in a bad living area for more consultations. I wish all of you the very best.

Jolie profile image
Jolie

Even after I was diagnosed with fibro I was told the was no treatment for it and the was nothing that could be done to help me ! so it never opened any doors for me .been left to deal with it alone with no treatment .its a living hell!

exhausted1 profile image
exhausted1

wow u did the drs in my med practice dont want to get involved in helping with claims. good luck

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