everyday something else!

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everyday something else!

Postby tintagel » Mon Dec 22, 2014 8:01 am

Hi all, As I've said before, in recent years I have had minor sort of flares lasting couple of weeks at most. This one started mid July and has got progressively worse week by week, sometimes day by day. Now my shoulders have joined my arms, thighs, hips, leg twitches, ibs, my hairdresser says I have lost hair etc...
I'm only 50 and terrified. I've also had a couple of near panic attacks, something I last had 18 years ago to a very serious and debilitating level (DR. would have to come out give me valium etc). I have been on a hefty dose of imipramine ever since, don't know if it's still working or not, but GP not keen to change it in light of fibro. He has refused a referral to the pain clinic too, saying they won't treat fibro pain. I live in Nottingham.
What I'm asking is, do you think this could still be a flare, with an end, or is this it for good and how many more symptoms can I get?
The leg twitches really scare me, does anybody else get these?
Sorry for being so negative but soooo scared and I know I have to stop going on about it at home or I will loose family and friends, nobody wants to hear it everytime they visit. I can tell it's draining people, especially my dear husband , who is wonderful.
I've always been real active, walker, swimmer, biker etc. Previously had ovarian cancer, fully recovered, Lupus diagnosis, and real abusive first marriage. I,m sinking fast. Just typing this making my arms ache.
Thankyou for reading.
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Re: everyday something else!

Postby goldie » Mon Dec 22, 2014 8:49 am

You can demand a referral to Pain Clinic take your husband with you for support, There is medication for Restless Legs ask your doctor for Ropinirole Dr sounds like a bit of an ass I go to the Pain Clinic and found them very very helpful with Fibro Pain They changed my tablets and have been a lot better not pain free but if a little pain goes away I am happy gl
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Re: everyday something else!

Postby dotty lotty » Mon Dec 22, 2014 10:09 am

I have found Ropinirole really helpful for my restless leg.

Not sure why he says pain clinic wont be able to help you unless it has something to do with your health board (or GP is a numpty). Could you try a different GP in practice. :teddy-bear:
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Re: everyday something else!

Postby Zia2014 » Mon Dec 22, 2014 11:44 am

I know for a fact the pain clinic in Nottm do treat fibro because the consultant rheumo at the circle clinic (back of qmc) told me. I'd suggest you ask your gp for a referral to them, my gp (in derby) referred me to there and they were going to refer me to the pain clinic.
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Re: everyday something else!

Postby lynnb3 » Mon Dec 22, 2014 1:20 pm

Hi I have also been refused treatment from the pain clinic. My GP did refer me but it was the pain clinic itself who wrote back to the GP and said they do not see Fibro patients. I am in Leeds fortunately i have my Arthiritas specialist who I see but even that is only Annually now
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Re: everyday something else!

Postby FluppyPuffy » Mon Dec 22, 2014 1:42 pm

At City Hospital Nottingham it was the Back Care Team who saw FM patients, or it was the case a couple of years ago. I was under the care of the CFS/ME Service for a good part of a year {I have the CFS card in my collection too} I was advised that I could access the team if I needed/wanted additional help with/for FM.

I'm in North Notts and when I was referred to Pain Management last year, it was a service run via a private company who provide Pain Management Services to patients referred to them by GPs. It might be worth seeing who provides Pain Management Services in your area of Notts, then try to see a different GP about a referral.


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Re: everyday something else!

Postby tintagel » Mon Dec 22, 2014 2:17 pm

Hi, Many thanks for all your replies, it is much appreciated.

Fluffypuppy, I too live north Nottingham (Hucknall), do you have the name of the private pain clinic you used? I will pay whatever it takes to get at least some quality of life back, the shoulders have really gone wild with pain today (Idont know why) I have a beautiful 2 year old German Shepherd girl, and it's made me very sad to have to walk her on her halti today as my arms/shoulders just couldn't manage the pulling she sometimes does, I had to turn back and get it (and she hates it).
I would never have believed I could end up like this.

Again, Thankyou.
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Re: everyday something else!

Postby hazely » Tue Dec 23, 2014 2:25 am

Hi can't help with your question but just wanted to say that im in Nottingham too netherfield
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Re: everyday something else!

Postby bev8366 » Tue Dec 23, 2014 5:27 am

I Am in Nottingamshire bot 20 mins from Nottingham and my gp dos a referral to pain clinic
I go to City Hospital for it and they will treat fibro they have put me on the waiting list for a lidocaine infusion
As a starting point go back to your gp and push for referral or get a second opinion and see another gp
I hope you get some help to make u feel a bit better gentle hugs
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Re: everyday something else!

Postby Zia2014 » Tue Dec 23, 2014 1:02 pm

I had no idea there were so many of us in Notts! Does anyone want to try and meet up? PM me if you do :)
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Re: everyday something else!

Postby tintagel » Sun Dec 28, 2014 9:16 pm

Would love to meet up, but how do I pm you? I'm rubbish with technology Lol, x
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Re: everyday something else!

Postby Zia2014 » Mon Dec 29, 2014 3:27 pm

I've sent you one :mrgreen: If you look above these posts there will some text that reads "User Control Panel" and next to that "(1 new message)". Took me ages to find that when I started using this forum!!
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