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Hi I'm back folks.

Postby diane1 » Wed Apr 11, 2012 7:03 pm

Hi folks

Some of you will remember me such as Denys( thanks for all your support), i've been off the site for some months as i've had a bad time with the fibro .

I was having problems with my ex husband which brought on a really bad flare up, I had dealings with the Police and local MP for a few months then my ex decided to do a runner to Scotland. I had hoped he'd stay there but I dont think he has, no news however is good news ,I think !

I got to attend a mini course at my local pain clinic. It was 2 days a week over 2 weeks which was just enough and it taught me a few easy exercises and put me in touch with others like me. I think most of what they tell you you already know as we do so much research looking for any help we can get to ease the pain.

I was also started on Pregabalin which was like a wonder drug to start. My husband even noticed that wasnt as stiff and it seemed to take the edge off the pain which was great. The dose was then upped and thats when problems started, I started to get itching all over my body but put up with it as the pain was numbed a bit so took anti hystermine to help but then my skin started to peel off leaving scabs so I was taken off it completely. Boy did I feel the difference and it made me realise how well it was working. As ive taken everyother medication available i'm now back on amatripaline which does nothing at all. I did come of mirtazapine of a night sas well and in 3 weeks lost 1stone 8 lb in weight. I'm now waiting to see my dr again tomorrow to see what I can try next as i'm now in so much pain I cant walk, sleep etc etc etc.Its a good job i'm on antidepressants as well !

Its looking like i'm going to have to take morphine for the pain now which I dont want but I think otherwise I might go mad with the pain.

On a good point I did manage to get into the support group of ESA . as many of you know I used to work for DWP(JCP) and when I was "let go" I claimed ESA . I was sent for a medical scored 15 points but was put in the work group with limited work capabilities. My husband wrote the reconsideration letter(pre appeal stage) and it seems I was awarded more points and got into the support group. I should have been put in it with 15 points though. So if you get put into the wrond group fight. I was classed as having great manual dexteritry as I managed to take a hanky of the Dr(nurse really) when I was crying due to the pain etc.and blew my nose!

Now I just have to win my pension from my employers. They agree I cant work but Capita my pension provider keep stating that fibro isnt life long . :swear1: Even my gp and consultant have confirmed it is especially as ive had it over 10 years (on my medical notes). I'll keep you all updated on that one. :banghead:

Any ideas folks for pain relief i'm getting desperate now .

Nice to be back. :blowkiss:
Does an elephant with fibro fog ever forget ?
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Re: Hi I'm back folks.

Postby FluppyPuffy » Wed Apr 11, 2012 8:58 pm

:wave: :wave: :wave: :wave: Di, it's absolutely fantastic to have you back on here with us :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

Sorry to hear what you have been going thru in the past few months, sounds like a wave of a magic wand or a wish from the genie of the lamp was what you needed to sort things out. Hopefully things will now be a bit calmer for you, at least for a while :fingerscrossed: :fingerscrossed:

The pregabalin sounds like it has taken you to hell and back :yikes: :yikes: :yikes: Those and gabapentin are the next possible options for me, with what has been said about them tho, I'm very reluctant to try them, which then leaves the stronger opiates/morphine meds as the next option :facepalm: :facepalm: :facepalm: Reading what you said about things happening when the dosage was increased compared to how you were on the lower amount, was going back to the lower dosage a possibility as it was giving you some relief, or were the reactions you went thru likely to have occurred at some point??? Just wondering with you having had some relief with it :dunno: :dunno:

When I went thru the delights of moving from IB to ESA, I was put in the WRAG to start with, on the basis that they decided my medical retirement only applied to my previous employment, so I was able to work in other areas. I sent them a letter with info showing my retirement was full and not partial as they were inferring, and was moved into the support group after a reconsideration of my fate :bear-dancing: :bear-dancing: :bear-dancing:

:fingerscrossed: :fingerscrossed: you can get the retirement part sorted soon, maybe :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: is what they need to get to the right decision, so you don't have to keep :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead:

Medswise, there are the usual linkys to NHS pages, but I don't think there have been any other meds added to it, so not sure what you could ask about :facepalm: :facepalm: :facepalm: :facepalm:
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Re: Hi I'm back folks.

Postby diane1 » Wed Apr 11, 2012 9:13 pm

Its good to hear from you Fluffy Puppy

I'd give the pregabalin a try as the low dose took the edge of everything and my husbnd noticed a big change. I was told the reaction I had could have been because my liver couldnrt cope with the pregabalin which is why they stopped it altogether but i'm hoping to persuade them tomorrow to let me back on the low dose , it cant be anyworse for my liver than the morphine they have offered me surely ? The only other side effects I had with pregabalin was dizzyness but not all the time and a very dry mouth but thats a small price to pay, Definately give it a try. They do say it can make you sleepy but it didnt have that effect with me even on the higher dose. :crazy:

Although i'm suffering at the moment my hands arent to bad as I have arthritis in them which is why I find it hard to type so dont come on line. If I was a horse they'd have shot me by now.

Just to add insult to injury my tinitus has got worse so any relaxation therapy is out, I need noise to blot out the high pitch wine in my head. Can anything else go wrong, its probably the teeth next !

Its a good job we can all laugh about it. :lol:

Take care and good luck with the pregabalin.

:fingerscrossed:
Does an elephant with fibro fog ever forget ?
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Re: Hi I'm back folks.

Postby FluppyPuffy » Wed Apr 11, 2012 9:44 pm

I think I'd be shot as well, in fact they'd probably line us all up and get :shooting: to sort us out :facepalm: :facepalm:

Must be something in the air for tinnitus, as my is on the increase. At my last review nefopam was added to my cocktail, it's done nothing for the FM pain but has made a huge difference to my migraines, but of course as one thing improves slightly, another one has to worsen, which has been my balance and tinnitus and hearing :facepalm: :facepalm: :facepalm:

I'm due my next review in a few weeks, and pregabalin will probably be on my GPs list of available options, so I'll see what he has to say about it at a low dosage. As well as the physical effects, the psychological effects are a worry for me as well. The mental health side of FM has always been difficult for me to manage, and at the moment I'm in a better place than I have been for a long time, so I don't want anything to upset that. I know tho there's also the possibility that it could make a difference.

Decisions, decisions, can I have an easy one to make please????????????
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.

If your dog doesn't like someone, then you probably shouldn't either
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Re: Hi I'm back folks.

Postby diane1 » Wed Apr 11, 2012 9:54 pm

I know I feel like a guineapig but i'm much larger!

I was still on the prozac, and mirtazapine when I took the low dose pregabalin and asthe pain was numbed a bit and I was less stiff I felt better in myself.

I'll let you know how I get on tomorrow.

sleeping tablets beckon for a few hours sleep.

diane :sleep:
Does an elephant with fibro fog ever forget ?
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Re: Hi I'm back folks.

Postby FluppyPuffy » Wed Apr 11, 2012 11:03 pm

Hope they bring you some sweet dreams :sleep: :sleep: :sleep: :sleep: :sleep: :sleep: :sleep: :sleep: :sleep: :sleep:
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.

If your dog doesn't like someone, then you probably shouldn't either
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Re: Hi I'm back folks.

Postby denys » Thu Apr 12, 2012 5:55 pm

Hi Di brilliant to have you back but sorry you are suffering so much we'll still have to meet up for that coffee once you get your pain under control I'm on pregablin and agree it does take the edge off but I'm finding its losing its efficacy :( :( :( :( see you on the boards :-D :-D :-D :-D :-D :-D
Denys

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