new and in need of help

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new and in need of help

Postby haywire » Sat Nov 15, 2014 9:12 pm

Hi all, my name is jay, I've been a sufferer of fibro for about 10 years but only had a diagnosis given to me yesterday :-( I will spare you the long monologue of my symptoms as I have been reading some of the posts on here, most of us are in the same boat.

I can't have amitriptyline or gabas because they contraindicate with the other meds I am on, so that left me on painkillers and zolpidem for the last 10 year's. I was on codeine (co codamol 30/500) for most of the time, with a short period on zomorph and oramorph years ago.

Because I didn't have a diagnosis and when I came off the codeine, my gp thought I was addicted, and even though I was using them exactly as prescribed, I came to believe that it was withdrawal pains, so I ended up on 10mg of subutex for just over 2 years. As you can probably tell I have been to hell and back. When I came off the subutex I had no withdrawal, but the pain came back a couple of months later.

By this time I was very sceptical of doctors, but my wife found me a very understanding doc who put me on codeine again and ms contin to help me and referred me to a rheumatologist. The outcome of that was finally getting the diagnosis (after 10 years it felt a relief to finally know what I am dealing with) he has put me on butrans patches 5mcg/hr but they don't seem to be touching the pain apart from a very very small relief, and the patch is already coming off after 2 days (I'm a natural sweater). I can't see how I'm going to keep it on for 7 days!

I am being referred to physio, but I don't see the rheumatologist again until august next year :-( should I see the gp about these problems? Or does it need to be the rheumatologist?

Sorry for the joyless introduction, the pain is back, I'm stuck in bed and feeling really sorry for myself, I just don't know what to do :-(
haywire
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Re: new and in need of help

Postby diane1 » Sat Nov 15, 2014 11:50 pm

Hi
like you ive had fibro for ages . My gp notes show I presented with symptoms andcthey queried it 20 years ago but it was only 8 yesrs ago I was diagnosed.
As theres nothing they can do for fibro once they get you on meds that suit you and give you back some quality if life you get discharged from the hosputal into the care of the gp. Thats why its important to find a fibro friendly gp.
If you find the meds arent working dont suffer even more, go to your gp and tell them.I used to feel like a hyperchondriac but having the diagnosis helped. I usually make a diary of what I was/wasn't able to do, other symptoms and the pain level and where it was. I always address my gp when I go as "im here again the guinea pig". Luckily the meds im on are the best ive had as a cocktail in 4 years.
Theres lots of meds out there so book that appointment.
Let us know how you get on. Good luck. :-D
Does an elephant with fibro fog ever forget ?
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Re: new and in need of help

Postby denys » Sun Nov 16, 2014 4:55 pm

Hi Jay and :welcome: to the forum :wave: :wave:
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: new and in need of help

Postby haywire » Sun Nov 16, 2014 8:08 pm

Thank you both :-)

Diane, thanks, when I go to the doctors I do feel like a hypochondriac. I guess its years of not the most understanding gps, my new doc has been really good. I am thinking that perhaps the tablets suit me better, my patch is sort of 'botched on' with surgical tape which is exactly what I was told not to do, you are supposed to use a new patch if the old one falls off. If I did that I would go through a months supply in a week :-(

At least I am feeling a little better today :-) I am up and out of bed, albeit very fatigued. Xmas is always a stressor for me, or it may be that the pain just gets worse in the cold weather? I don't know.

Glad to be part of the forum :-)
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