Fibromyalgia

Careful_with_that_Axe

You weren't being resistant were you?
Naughty Zippy!

bigzippy

Careful_with_that_Axe wrote: »

You weren't being resistant were you?
Naughty Zippy!

:rotfl:Moi? Never!!

black_paw

bigzippy wrote: »

I've been unable to work for the last 2years. I got tonsillitis that stayed with me for 4 months and never recovered, like you said, just getting progressively worse - or at least becoming more and more aware of how ill I actually was. My specialist said that I've been symptomatic for at least 10years.

I was tested for allsorts - as I presume you have too. Some of them too scary to even think about, but I think by the time I'd been off ill for at least a year I started to realise that it was more than likely an autoimmune disease of some description and that I probably wasn't going to get any answers. Some may think that because I have a diagnosis that must mean that I have answers, but (as I'm sure a lot, if not all, of you on here can relate to) that's not actually the case.

With ME there's no known/definitive cause or cure. The "treatments" that were recommended (pacing (like that's a treatment! :rolleyes:), graded exercise (erm?) and CBT (humph)) were about as useful as a bag of sweet F all. I thought that this was now my lot in life: Lying on the couch, watching daytime tv and suffering bouts of random infections and pains that were generally unexplainable, slowly (or more quickly in some cases) kissing goodbye to my social life, unable to persue outside interests incase I picked up something else.

But, as time goes on you learn more about what you're capable of, what brings on what symptoms, what medications work for you (at in what circumstances), you start to build up a picture of what you can do. Not only that, but you then begin to have the tools and the information to explain to other people what's wrong with you without being made to feel like a fraud, or downplaying it, or being embarrassed by it. (If you haven't read it already, read the Spoon Theory - it's certainly helped me and others on here, both for us and for our loved ones) That can be as important as anything, because peoples opinions of you (no matter how much we tell ourselves that "words can never hurt me" BS) do matter. They sink in on some inexplicable level and decimate our self-confidence, making us feel even worse/more useless/more pathetic etc. I got to the point where I was even questioning myself, mid asthma attack (which put me in hospital), whether I was bringing it on myself!! It's sheer ludicrousness but in the moment all those niggling self doubts can get to you.

I don't want to sugar coat it, and I don't want to teach granny to suck eggs either. I hope that I maybe have said something that resonates with you, or gives you some hope, or something...? I guess what I'm trying to say is, we all know at least some of what you are/have going/gone through and we're here if you wanna talk/vent/ask/discuss.

And hi Jamla, welcome to the thread :wave:

Hi bigzippy and thank you , its nice to read about THE THINGS from other people and try to learn more about your illness. thank you :rudolf:

somebody_else

Just a very quick one to say hi to everyone, I'll be back later (either tonight or tomorrow), but thought one or two of you might be interested to know that I've finally got my DLA form in the post.

It's now out of my hands, so there's no point fretting about it. [Oh, first class recorded, and if you've got a friendly neighbourhood post office, they'll deduct the paid for postage from the cost of sending it first class instead.]

black_paw

Unity wrote: »

Was your husband's diagnosis of FMS secondary to something else like an accident or injury? If it was then it may help to stress the underlying cause as well - as I have heard of people being refused on just the FMS diagnosis. I think most people on here would agree that there is nearly always something that triggers it.

In addition try to find out if there is a specialist in FMS in your area and get a referral, since their input will undoubtedly aid claims for IB and DLA. It is worth (if you can afford it) even paying to have a private medical report done, as the higher the specialist, the more notice is taken.

Is your GP on your side? If not then try and find one in your area who is sympathetic to FMS and change - it is like banging your head against a brick wall if you have one who thinks: "It's all in your head":rolleyes:.

Have a look at this site http://www.fibromyalgia-associationuk.org/ and find out if there is a local group as they will be a source of information on where to go for help in your area. In addition take a look at this article http://www.fibromyalgia-associationuk.org/content/view/57/2/ and get your husband to quote it in his claim. Hopefully if they see that you are aware of how the decision making process should be applied - they will apply it properly .

Good luck and like I always say - DON'T give up!;)

have you tried the citizens advice bureau ? for help they will advise you and do all the paperwork and come to the appeal with you . I went to the local disability help centre as i was in tears most of time not knowing what to do , i sighed over my rights and they have done all the paper work, faxing , advise on what info to gather , they have been so brill for me . won one appeal now on second appeal. good luck

Unity

somebody_else wrote: »

Just a very quick one to say hi to everyone, I'll be back later (either tonight or tomorrow), but thought one or two of you might be interested to know that I've finally got my DLA form in the post.

It's now out of my hands, so there's no point fretting about it. [Oh, first class recorded, and if you've got a friendly neighbourhood post office, they'll deduct the paid for postage from the cost of sending it first class instead.]

That's excellent news S/E - I'll keep everything crossed for you that you get a good result first time;).

Careful_with_that_Axe

Well done s/e. Hope it all goes smoothly for you.

LameWolf

:hello: Hi everyone.

Just sticking my head round the door to let you know I'm back online.

Haven't caught up with the thread - was going to try, then I looked at the page count and nearly fainted! So I contented myself with just the current page.

BZ for what it's worth, I've found CBT to be the biggest waste of time ever dreamt up by [STRIKE]sadists[/STRIKE] doctors.

Unity

Jamla wrote: »

Hi , i had fibromyalgia for 3 years , seems to come from when i had a bad accident at work , .went slowly down hill since. i found i could do less and less with out feeling my head would blow up , dizzy ,unable to do stair's ,have to spent a day or too indoors mostly in bed just to go out shopping for a few hours the next day , my hands are going numb as i write this , so i have had to give up work 07 was so depressed as been there 18 years and loved it never been out of work , and hate being at home , but find it hard just to peel potatoes ect . from reading on here we are all in the same boat . i have been turned down for dla but hoping to appeal.
I have seen Professor Davies in London in private, as told it took a long time to get to see him and only about 10 mins if going through Doctor, so went private ( lucky brother paid ) reduced rates for benefit. what a lovely man , just so friendly you feel welcome there, we took long list of questions he answered each one , did a medical as well . saw him twice and talked on phone . ( phone appointment ) he offered some pills and injections . i tried the pills but as allergic to lots of stuff i was even worse so advised not to take them. but everyone is different , well worth seeing him as he understands you , and you don't feel daft when saying the memory is on it way out too ... www.fibromyalgia-associationuk.org was very helpfull in my case

Welcome Jamla - fully understand how you feel about work, it takes a long time to come to terms with it, if we ever do . I went to uni as a mature student and was dxd in my first year. I enjoyed my work placements, but had to do the two weeks separately as I couldn't manage a fortnight straight off. It became obvious that there was no way I could manage even part-time so I had to concede defeat. I still miss it but the only way I get around it is to remember that when I was working, everything else had to take second place, or in some cases be sacrificed on the altar of work, so now I treasure the odd few things that I can do because I now have the time .

bigzippy

LameWolf wrote: »

:hello: Hi everyone.

Just sticking my head round the door to let you know I'm back online.

Haven't caught up with the thread - was going to try, then I looked at the page count and nearly fainted! So I contented myself with just the current page.

BZ for what it's worth, I've found CBT to be the biggest waste of time ever dreamt up by [strike]sadists[/strike] doctors.

Welcome back Lamewolf. What was your experience of CBT? Today I was telling her that i don't do things unless I can see the point of it and that there may be some benefit. She said that I have to do experimental behaviours in order to change my thinking. Forget that! I'm not changing stuff like my routine, which has taken me two years to work out, on the off chance that it might do something good!!