Fibromyalgia

RoxsiScotland

thanks you two, feel a little better just telling someone. plus the cats came up for a cuddle - she either senses im down or she senses the hot water bottle by my feet! either way everybody wins :rotfl: zero chance of learning to drive im afraid due to finances, plus im terrified! i was sorted when OH lived here cos he had a car. maybe someone should just attach wheels to me and give me a shove! anyone else hate sunday tv? its dire, and saturdays getting just as bad, i actually resorted to watching fiddler on the roof yesterday!

bigzippy

RoxsiScotland wrote: »

thanks you two, feel a little better just telling someone. plus the cats came up for a cuddle - she either senses im down or she senses the hot water bottle by my feet! either way everybody wins :rotfl: zero chance of learning to drive im afraid due to finances, plus im terrified! i was sorted when OH lived here cos he had a car. maybe someone should just attach wheels to me and give me a shove! anyone else hate sunday tv? its dire, and saturdays getting just as bad, i actually resorted to watching fiddler on the roof yesterday!

No worries Roxsi. Do you get any kind of benefits? If you could get awarded mobility then you could either use the money to learn to drive, or to get taxis or whatever. Maybe contribute to friends' petrol costs?

Fiddler on the Roof? Dude, that's rough. You really do need our help! :rotfl:
Sunday tv is lame, you're quite right. It's pretty much as bad as daytime tv. I'm of the personal opinion that whoever thought giving Alan Titchmarsh his own show would be tv-gold deserves to be shot!

Careful_with_that_Axe

Hey Roxsi, tell all your troubles to us and the cats.
Sorry to hear you're having a [EMAIL="!!!!"]carp[/EMAIL] time.
I always find Sundays really hard - particularly from sort of 4pm onwards. I try to keep this at bay by having something on DVD or taped to watch that I can lose myself in. Otherwise I just end up flicking channels endlessly.
Sending you lots of hugs. Tomorrow is tha start of another week. I hope you can put this last week behind you and try to start afresh from tomorrow.
x

raeh

hello all

BZ i must make a mental note that you are getting married otherwise il never remember

Roxsi I cant remember if you said how long you have been diagnosed for but when i was first diagnosed i felt very low about it all and couldnt see how life would ever be good again but it was and even though theres many [MANY!!] things i cant do theres many i CAN do i think we have said on here a few times its all about looking at the positives of each day. Im having a bit of a bad time at the moment and struggling along and sleeping more and more as each thing i do tires me even more than usual [is that possible??] but just coming on here cheers me up even if i cant post much keep coming on and venting. oh and as bz said if you get benefits im sure you can help to learn to drive? i think if you get mobility they will pay for you to learn?? il go look for that in a mo

CwtA i hope the neck brace helps and if not make sure you get it looked at

im starting to forget everything i read now :rolleyes: whoever first said about nails? well mine were lovely until i treated myself to a french manicure kit and a black nail varnish tut. Now they have all broken again, they grow to an ok length and stay like that for about a week then all break very very low, my nails are really soft

i read an article the other day about how having long hair over a 'certain' age can age you up to 10 years :eek: so i have decided im well over due a hair cut! its too long for me to do anything with anyway now and all i do it clip it back so after work tomorrow im going to book an appointment. [whilst i still have wages left in the bank anyway!]

im sorry if i have ignored anything important anyone said but my head is just all over the place at the moment, i have the memory span of a goldfish and im having trouble getting a full sentence out! the kids gave up earlier trying to ask me anything!

a warm and peaceful night to everyone xxx

black_paw

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 ... https://www.fibromyalgia-associationuk.org was very helpfull in my case

RoxsiScotland

ive had m.e. for 5 -6 years, after bouts of tonsilitus and glandular fever, getting progressively worse as time goes on. i used to believe i would get better one day, but i dont anymore. at least we all understand each other, think starting this thread was possibly one of the best ideas ever

bigzippy

RoxsiScotland wrote: »

ive had m.e. for 5 -6 years, after bouts of tonsilitus and glandular fever, getting progressively worse as time goes on. i used to believe i would get better one day, but i dont anymore. at least we all understand each other, think starting this thread was possibly one of the best ideas ever

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:

bigzippy

raeh wrote: »

hello all

BZ i must make a mental note that you are getting married otherwise il never remember

...so after work tomorrow im going to book an appointment....

im sorry if i have ignored anything important anyone said but my head is just all over the place at the moment, i have the memory span of a goldfish and im having trouble getting a full sentence out! the kids gave up earlier trying to ask me anything!

Hi Raeh. Glad you made it on, we've missed you. Sorry you're feeling so pants! Can't believe you're still working through it all you lunatic! You should take a breather and recouperate! You'll only make yourself worse, so listen to Auntie Zippy!

Don't worry about the mental note, goldfish-girl, I'll just keep reminding you and the brain-damaged one every so often, shall I? :think: Seems like a plan for now eh...?
(Btw s/e, it's a new page, so I feel obliged to remind you: 9.25months til my wedding!! )

purplecatlover

good morning

ooh zippy its in your sig now ......cant be forgotten then

roxi cats are great for that aren't they, they can tell when we are not very well, and they are warm, so much so that even in summer my legs are cold without a cat sat on them now.

Unity

mummyof3boys wrote: »

Thankyou for the links we shall certainly be using a few snippets in the appeal letter and i have emailed the local contact in our area to see if they can help.:D

With regard to there being a trigger my Husband served in the army for 10 years and his condition became worse after leaving, maybe this is a factor. We have read somewhere that in America they are looking into cases of servicemen and FMS, maybe there could be a link

Our GP seems to be on my Husbands side , after moving home and changing GP she was the one who suggested it might be FMS after 4 years of constantly telling previous GP that something was wrong and we needed referal to specialist.
The real sticking point is the GP who did the medical i certainly dont think he had the first clue about FMS.:mad:

Many thanks again for all your help and we certainly wont be giving up.

Hello Again,

There's a very good book which you can get from Amazon, although your local library might have a copy http://www.amazon.co.uk/Fibromyalgia-Chronic-Myofascial-Pain-Syndrome/dp/1572240466/ref=sr_1_1?ie=UTF8&s=books&qid=1228733485&sr=8-1 There's details of a study in there where a squad of US Marines were put through a sleep deprivation experiment. After about seven nights without sleep they had all developed fibromyalgia symptoms. So depending on what your husband was doing it might actually have been army life that caused his problems. It is certainly worth investigating. You can get the book for about 80p plus postage from Amazon Marketplace, so it could be a good investment .

My son has quite a few mates over in Iraq and Afghanistan at present - one of his old school friends was the 100th soldier to be killed back in June so we've heard quite a few tales of how this country treats it's heroes - not good enough at all!

I wish you all the luck in the world in overcoming the obstacles, determination and if necessary the backing of your MP will not go amiss.