Fibromyalgia

tatty

hi i got married in 2005 (had fibro since 2002)and i can honestly say i got through it fine ,before the wedding i tried to do to much and wore my self out so the best advice is pace yourself if you feel like you have done to much stop (i know its easier said than done)i panicked that much during church service and was convinced my husband to be would mess up his words i learnt his lines more than my own and when it came to my bit i said i would take him to be my wife !!!!! i think it was the excitment of the day that carried me on, the night time wasnt easy and i had to sit down and recharge feel free to ask any questions although when i have read what ive wrote i dont think ive helped much ? take care claire x p.s when is the wedding

bigzippy

Unity wrote: »

Hi all,

I’m Unity and I’m a fibroholic!

I think I’ve finally got through all the posts on here, when last I looked there were only two and I never dreamed there’d be so many. When I was diagnosed hardly anyone had heard of fibro :rolleyes:.

My problems started in the 70’s following a couple of accidents. I was diagnosed in 1994 with secondary fibro, CFS, cervical and lumbar spondylosis, scoliosis, Raynaud’s, osteo-arthritis, early onset osteophytosis and a bone cyst in my thigh. Since then I’ve had a positive MS diagnosis from one neurologist, revoked by another, but definite neurological problems including a lipoma in the meninges and abnormalities in my hypothalamus. Three failed lumbar puncture attempts left me with arachnoiditis and a recent x-ray shows I’ve been living with a fractured pelvis, fused vertebrae from L3 to S1, a trapped sciatic nerve and a bony growth over the vertebrae. This explains the failed lumbar punctures – since the doc was trying to push the needle through bone :eek:. I’ve recently been diagnosed with IBS and the beginnings of diverticulitis. I have tinnitus as well and have heard this is also related.

My immune system is also duff and I get recurring cranial shingles – three separate attacks in the last ten days – the blisters are finally going.

Some research was carried out on a group of US marines and concluded that sleep deprivation produced FMS symptoms in these previously unaffected fit young men after just seven nights. This is detailed in: "Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual" by Devin J. Starlanyl and Mary Ellen Copeland (Paperback - Jul 1996).

Therefore I just wondered if anyone else suffers from the associated sleep disorder involving REM sleep rather than insomnia? At first I was diagnosed as narcoleptic but I underwent investigations in a sleep lab that confirmed I start dreaming within 30 seconds of falling asleep and I never reach Delta (restorative) sleep. I don’t have sleep paralysis either so I often move around in my dreams – trying to escape vampires, zombies, wasps etc. and have even taken four sleeping tablets instead of half a one – because I dreamt I couldn’t get to sleep! My dreams are more vivid than reality so I’m not really surprised that I feel shattered and ‘unreal’ for a lot of my waking time.

That’s probably enough for now – well it’s enough to type anyway.

I'll say sleep well - although I know it's a fond hope :rotfl:.

Dude - that sounds G. R. I. M! :eek:
I'd heard that they reckons fibro was caused by lack of REM sleep etc hence the amitripyline etc drugs that supposedly help relax you into such states etc (but please don't quote me!) - I've always had problems with sleep. Too little, too much, the wrong kinds, the wrong times... you name it. IMHO I think the sleep disorder side is/can be affected by my ME and such - and the fact that I can't do much in the way of expending energy - so really your brain etc isn't ready for sleep... if you see what I mean? Not that that explains how I'm so tired and can drop off or sleep so long... but you get what I mean... I think?(!) :rolleyes:

welshbit

Hiya all, I'm still here just haven't posted for a while...

raeh wrote: »

im thinking of getting a BB , iv never bothered before but recently i think it would make it much easier to get round the supermarket knowing i havent had to walk miles to get there in the first place and dont have to push a full trolley far afterwards across the car park.... it just seems another step of giving in applying for one? im not sure if that sounds odd

My advice is go for the blue badge, it will make such a difference, knowing the car isn't too far away. Don't know about others, but I have trouble twisting round (spine problems) and the fact that the disabled spaces are bigger means you can open the door wide to get into the car easier and then not such hard work reversing out, don't need to twist round so much.
I know what you mean about giving in, I felt that too. Whether it's a blue badge, mobility car or mobility aid. It feels like giving in to the illness. What choice do we have though? That shorter walk to the car can make such a big difference. If I go out in my scooter, sometimes I even have the energy to make a cuppa when we get in. Now I try to think of it as a trade off. If I use the scooter I can go in more than one shop, shame that means I'm likely to spend more money :rolleyes:
Thanks for mentioning the bruises I'm so clumsy and also knocking into things but then forgetting. So don't know how I've got bruised. It's like symptoms of symptoms of symptoms, damn FM. One thing that I do, is sleep with a pillow under my knees when on my back (seems to give more support) then when on my side have the pillow cushioned between my knees so that they don't knock each other.

bigzippy

tatty wrote: »

hi i got married in 2005 (had fibro since 2002)and i can honestly say i got through it fine ,before the wedding i tried to do to much and wore my self out so the best advice is pace yourself if you feel like you have done to much stop (i know its easier said than done)i panicked that much during church service and was convinced my husband to be would mess up his words i learnt his lines more than my own and when it came to my bit i said i would take him to be my wife !!!!! i think it was the excitment of the day that carried me on, the night time wasnt easy and i had to sit down and recharge feel free to ask any questions although when i have read what ive wrote i dont think ive helped much ? take care claire x p.s when is the wedding

Thanks for your reply Claire
The wedding is September next year :T
I'm very excited - can you tell?
I've decided that I don't care about tall uncomfortable shoes, I don't want to drag a heavy dress around, I'm not bothered if people catch a glimpse of blue fluffy slippers underneath my wedding dress at the venue and I'm not bothered if I do a posh&becks style throne receiving line(!) - if I have to sit down then !!!!!! it. The people that are there should know/care and if they don't then I'm not arsed about them anyway :rolleyes: I'm not going for massively posed photos cos I don't think I can deal with standing around for much and I'll get bored We're not having a long drawn out affair either - church, speeches, buffet - bish bash bosh! Can anyone think of anything else I could do to reduce stress/strain?
I'm worried about any boning/bodicing on the dress (which flattery wise I more than likely need) and energy for the honeymoon... did you leave a gap between wedding and honeymoon (if you had one).
What would you have done differently if knew then what you know now?

bigzippy

welshbit wrote: »

Hiya all, I'm still here just haven't posted for a while...



My advice is go for the blue badge, it will make such a difference, knowing the car isn't too far away. Don't know about others, but I have trouble twisting round (spine problems) and the fact that the disabled spaces are bigger means you can open the door wide to get into the car easier and then not such hard work reversing out, don't need to twist round so much.
I know what you mean about giving in, I felt that too. Whether it's a blue badge, mobility car or mobility aid. It feels like giving in to the illness. What choice do we have though? That shorter walk to the car can make such a big difference. If I go out in my scooter, sometimes I even have the energy to make a cuppa when we get in. Now I try to think of it as a trade off. If I use the scooter I can go in more than one shop, shame that means I'm likely to spend more money :rolleyes:
Thanks for mentioning the bruises I'm so clumsy and also knocking into things but then forgetting. So don't know how I've got bruised. It's like symptoms of symptoms of symptoms, damn FM. One thing that I do, is sleep with a pillow under my knees when on my back (seems to give more support) then when on my side have the pillow cushioned between my knees so that they don't knock each other.

Welcome back Welshbit - wondered what happened to you.
I second the going for the BB. I really want one and I'm trying to convince OH that he really *does* want to go waste an afternoon (well it wouldn't be a morning would it?? ) in the CAB. I wanna go through everything I can and can't claim and what I should and shouldn't say. I'm currently driving a mobility car that's actually for my OH's mum (she's half blind so doesn't actually drive it) but it goes back in December and I just know I'm gonna miss it like crazy.

As for the knees in bed - I didn't think about it til Welshbit posted - but I always have a fold of quilt between my knees/thighs. I just simply can't sleep without - I can't stand the feeling. Maybe it's related...?

[Is anyone else starting to feel sorry for our newly inundated GPs? ]

Careful_with_that_Axe

I agree - do go for the BB raeh. I got one about a year ago and it does make life a lot easier. Why waste some of the little energy you have struggling with shopping when you don't have to?
I understand what you mean about giving in - when i first got my BB, I felt very much like that, but now I'm just grateful for it.
Hello to all newcomers. It's so good to be able to bounce things off other people (like the bruising) and know that you're not alone. Some things seem too trivial to speak to the medics about, but you can sound off here and find other peoples' experiences and whether they match your own.
Have noticed many people here mentioning IBS which I've had since I was about 14 but never acknowledged any connection between this and subsequent medical probs. Wonder of there is some sort of connection.
Stay warm people and make the best of life you can.
Night folks
J
x

Careful_with_that_Axe

p.s. bigzippy, Congratulations! I think your joy will carry you through the day just fine.
x

bigzippy

raeh wrote: »

i get fabulous coloured ones on my arms and im sure people think im being beat up lol

big zippy thats a lovely story its fab to hear something happy these days i went to my sisters wedding in may and i was worried about managing the day but i rested for a couple of days before hand and afterwards and when ever i felt like sitting down on the day i did

it seems to be quite random the things people claim and are allowed? i get the mobility but not care and people get care but not mobility. The main reason i dont get the care element apparently is the fact i manage to care for my own family.. no matter how difficult i find it somedays, i still feed and look after the kids!! im thinking of getting a BB , iv never bothered before but recently i think it would make it much easier to get round the supermarket knowing i havent had to walk miles to get there in the first place and dont have to push a full trolley far afterwards across the car park.... it just seems another step of giving in applying for one? im not sure if that sounds odd

I know what you mean about looking beat up - but then I'm starting to seriously consider trolling a cushion round with me to sit on - and then I'll just look like I've got piles :rolleyes: - what's worse? The appearance of scrapping or haemoroids?

Thanks too raeh - he is the one thing keeping me going most days and he's really good to me He's my gift from God methinks :A

And incase you haven't got the message yet - get the BB!

welshbit

I decided it was easier to cover lots of things in one post than try quoting or I'll end up in a right mess :rotfl:

Zippy - I got engaged last month, taken enough hints mind, by me and family. I can't offer much help for your wedding day though, we're just going to the registry office on are own and try and find witnesses on the way. ( His family are in Liverpool and dad is not well enough to travel. My family are down here in South Wales and Nan not well enough to travel.) This way, all is fair, and I can just enjoy becoming wife to the man I love. We'll go for meals with the familys and friends seperately. So that's double the gentle celebrations to look forward to. We're lucky that our families are more than happy with this arrangement too. Just need to pin him down to a wedding day now......that could take at least another year.

Depression and FMS I think is a bit like the chicken and the egg. I've been treated for depression and chronic pain for nearly 20 years, ever since I had an accident at work when I hurt my back in 1989. My CPN reckoned I had symptoms of depression since I was about 12 years old, although I wasn't obviously depressed then. So, I think I may well have had depression without the pain, but I think I would have had a much better chance of recovering without the pain. Even the pain clinic consultant told me there is nothing more they can do until the depression lifts a bit. It's not easy when they tell me I'll never be pain free, and can't increase my morphine anymore because I want to be able to drive, it's my independance. I can't see how they are giving me anything to be optimistic about to even see a way out of depression let alone walk that path, if you know what I mean. Like I said, chicken and the egg. I'd be quite interested if anyone with FMS didn't have depression.

I'll post some more comments in a bit, as well as needing a rest, I find long posts difficult to read myself so sorry, but well done, if you managed to get this far. :T

bigzippy

welshbit wrote: »

I decided it was easier to cover lots of things in one post than try quoting or I'll end up in a right mess :rotfl:

Zippy - I got engaged last month, taken enough hints mind, by me and family. I can't offer much help for your wedding day though, we're just going to the registry office on are own and try and find witnesses on the way. ( His family are in Liverpool and dad is not well enough to travel. My family are down here in South Wales and Nan not well enough to travel.) This way, all is fair, and I can just enjoy becoming wife to the man I love. We'll go for meals with the familys and friends seperately. So that's double the gentle celebrations to look forward to. We're lucky that our families are more than happy with this arrangement too. Just need to pin him down to a wedding day now......that could take at least another year.

Depression and FMS Like I said, chicken and the egg. I'd be quite interested if anyone with FMS didn't have depression.

I'll post some more comments in a bit, as well as needing a rest, I find long posts difficult to read myself so sorry, but well done, if you managed to get this far. :T

I know what you mean Welshbit, I'm a bit more the other way though - I forget what I'm replying to if I don't have the quote there :rolleyes: Sorry if I keep repeatedly popping up... esp if I'm repeating myself!
Long posts are tricky and I do tend to scan a lot on bad days. I'm the same with books/magazine articles etc - they're just a no go sometimes.

Congrats on your engagement! :T I'm somewhat envious of your plans tbh, although I also know that if I don't see anyone on a set day I won't get round to it cos I'll probly turn into a hermit again!

As for the depression vs FM - I'm not depressed. That's not to say that I haven't, in the past, been labelled with it or it's counterpart Stress - but I kicked the antidepressants about 8 years ago now and haven't dipped back under that black cloud since (well not properly IYKWIM). Looking back now, I don't think it was depression in the first place - it was pure frustration with my circumstances and illnesses at the time. I have (since and while being diagnosed with ME) been assessed by CMHT and such and they agree that I'm not depressed.

Hope this helps in some way...?