Fibromyalgia (part 2)

kassandra

Oooohh, a new thread!!

Ha! Unity very good! Liked the pig thing!


"Problem is I love piercings, shaved heads and tattoos, but also like comfy shoes and elasticated waist trousers "
CWTA that is so true of me too!:rotfl:

I don't know how to use the quote thingy

When I got back I had to get a spatula and clear all the snow from my car. People must have thought I was mad but I couldn't bear to touch it and there was about 6/7 inches on it!

S/E lovely to finally meet you, Was the bed expensive? I've been thinking about that kind of thing. I was even looking at electric scooters the other day but felt like a fraud. It would help immensely but I really do feel like a fraud as I'm only 30 and feel like I don't qualify!

Does anyone know of wheelchairs that you don't have to wheel, like electric scooters but in a chair that you can fold up into the back of the car?

BZ, I looked at those letters you put a link on and was howling! the twins came running in from the kitchen with a look of concern and confusion. They are used to hearing me make weird noises and crying and things and regularly come up to give me a cuddle when I'm badly but they really didn't know what to do! I was laughing that much that I was making a snorting sound while crossing my legs cos I thought I was going to wee and crying at the same time (with laughter). The look on the kids faces made me laugh even more, they didn't know what to think! I really needed that. "It's your hamster Richard" :rotfl:

On the internet thing.......I don't have a phone line and refused to get one in the new house since eldest spent 25 quid in one day on games on sky then my mates daughter came to live with me and spent 160 quid in the space of 12 hours ringing the boyfriend :mad:

Anyway, what I did was get one of those mobile dongle things. I got one already loaded with twelve months worth of usage. It was 100 quid but works out cheaper than buying one for 50 quid then paying 15 pounds a month. You can only get them from certain shops that are already loaded like that, just wanted you to be aware. I only went three days and felt like my arm had been cut off :eek:

Trialia is Lyrica the same as pregabalin? The doc has said she might try me on that.

Kass

Trialia

Kass - yep, Lyrica = pregabalin.

kassandra

Suep glad to hear it's the last sesh!

Has anyone had experience in waking up in the night with pins and needles? It's happened a few times and the first couple I took no notice of as it was one hand and it was the arm that I was laid on. Then it happened where it woke me and it was both hands and I was laid on my back so I thought I couldn't have been laid on a nerve. The other night, I woke up, I was laid on my left arm but my right hand was killing with pins and needles but it was also really swollen up and felt really tight to even touch. I'm just asking because I tend to think everything is due to the fibro but I've been told we should be careful not to do that as you could miss something else going on.

xxxx

[Deleted User]

on the subject of beds; I was watching QVC last year and they had their goose down filled feather bed 'topper' things and pillows on offer. I bought one on impulse and have never looked back. It's so comfy and warm in the winter it's like lying on a cloud. And I have a medium firm proper mattress under it for support...once I get in with my leccky blanket and two kitty cats I don't want to get up.
I would like to try the temper mattress just to see how they feel, but the ones I've seen are quite pricey, will have to wait for that elusive lottery win :-)

sharon59

kassandra wrote: »

Suep glad to hear it's the last sesh!

Has anyone had experience in waking up in the night with pins and needles? It's happened a few times and the first couple I took no notice of as it was one hand and it was the arm that I was laid on. Then it happened where it woke me and it was both hands and I was laid on my back so I thought I couldn't have been laid on a nerve. The other night, I woke up, I was laid on my left arm but my right hand was killing with pins and needles but it was also really swollen up and felt really tight to even touch. I'm just asking because I tend to think everything is due to the fibro but I've been told we should be careful not to do that as you could miss something else going on.

xxxx

I get this in both hands and often wake up with swollen hands and pins and needles.Gp said the pins/needles is because the swelling causes pressure on nerves.Its a bit like carpel tunnel l think.hope this helps!

Careful_with_that_Axe

kassandra, I've had the pins and needles thingy. So much so that sometimes my arms go numb, including one memorable time when my arm was over my head and numb. I tried to lift it up and it came down and wonked me straight in the gob :rolleyes:

tjak

I have been lurking around for a while now, but was diagnosed last week with fibromyalgia after 4 years of seeing every speacialist in the area. I still work full time and take amitryptilene 70mg to manage pain and keep me going. Does anyone else still work full time, or is it just me and my days are numbered?

suep

Kassandra yes I get the pins and needles in my arms and hands, most nights they dont seem to swell up though but it feels like it.

You can get electric wheelchairs, but Im not sure if they fold up small or not. My friend has an electric scooter and shes 32, she's getting a mobility car soon and is going to have a hoist fitted in the boot to pick her scooter up and put it in, I'm so jealous, I would have so much more freedom with that, whenever I want to go to the shops I have to get someone to push me in the wheelchair which I hate, it would be lovely to be able to go out on my own again.

Careful_with_that_Axe

suep, my local paper has lots of mobility scooters for sale 2nd hand. Or do you need the car part aswell?
Do you have a motobility scheme in your local town? You could get a lecky scooter from them and at least get out on your own.

Welcome tjak. I think it depends a lot on the individual and the circumstances regarding work. Sorry. That's not much help really is it.

somebody_else

unity wrote:

S/E - adjustable beds. Ours has the divan base and we find it quite easy to just use the space underneath by raising both ends of the bed at the same time . We have those narrow storage boxes (where I store my summer clothes for fifty weeks of the year ) this goes at the top end and the bottom end is used for the Imelda Marcos collection of shoes . It's quite easy to judge where the bed descends to IYSWIM and so long as you leave a bit of clearance - especially around the electrics it's fine.

a) I didn't think of that - but never having actually seen one in action prior to getting mine, I didn't know if there would be space underneath. Having said that, knowing my luck I'd lose my balance leaning in and not be able to get out again 'til T/S got home from work - and as he's been known to not get home 'til after I've gone to bed, I could be there some time.

unity wrote:

prefer this to having it on legs as you don't get so much dust underneath. My favourite aunt (more like a grandmother as she was 20+ years older than my mum) used to physically pull her double bed (heavy wood frame - with two mattresses) out every week to vacuum behind it, at the age of 81 - I am nothing like her.

Blow that for a game of soldiers (other phrases are available) but if I ever get that worried about the build up of dust under/behind the bed I'll pay my house fairy double time to sort it out for me.

unity wrote:

I mentioned constantly feeling cold and the impact this has on the pain - even when DH and DS reckon it is tropical in the lounge (28 degress) and he asked if I wanted this investigating, but I said I would wait until later in the year and if I am still feeling frozen in June we'll have a rethink

Erm... has the doc ever told you that morphine causes a reduction in your core temperature? When I was on the morphgesic my core temp dropped by a degree, and I was cold all year round. Now I'm off it, I do actually warm up occasionally.

kassandra wrote:

S/E lovely to finally meet you, Was the bed expensive? I've been thinking about that kind of thing. I was even looking at electric scooters the other day but felt like a fraud. It would help immensely but I really do feel like a fraud as I'm only 30 and feel like I don't qualify!

Does anyone know of wheelchairs that you don't have to wheel, like electric scooters but in a chair that you can fold up into the back of the car?

Nice to meet you as well, kassandra. The bed was pricy (compared to a bog standard divan) but not as expensive as some - I paid around £450 for mine (and you can't get an exemption on VAT for an adjustable bed unless modifications are made to it specifically for the use of the disabled person), but as far as I'm concerned it's money well spent.

As for the scooter - I think we shoud ban the F(raud) word as well as the G(uilty) word and the s(hould) word. If the scooter would help immensely then get yerself one. Just think of all the things you could do with the energy saved by not knackering yourself by trying to walk too far. It's for this reason that I got a dishwasher (amongst other things). What can seem like a luxury for some are a massive help for others. I no longer stand at the sink exhausted trying to wash up a few pots, etc every day. (Oh, and I don't break as many things either as I'm less likely to bang them on the taps (poor coordination), although I did manage to break my cafetiere just before as I dropped it just as I was putting it in the d/w).

Regarding the electric wheelchair - in my experience they tend to be more awkward to manoevre, are prone to running away if you get too near a slope and are incredibly heavy. I get the impression that the smaller scooters are easier to dismantly to put into a car.

bigzippy wrote:

Oh, and welcome back S/e ! We missed ya!!

Wotcha BZ and thanks. By the way - did I hear something about you getting married this year?

tjak wrote:

I have been lurking around for a while now, but was diagnosed last week with fibromyalgia after 4 years of seeing every speacialist in the area. I still work full time and take amitryptilene 70mg to manage pain and keep me going. Does anyone else still work full time, or is it just me and my days are numbered?

Welcome tjak.

I've worked on and off since I first became ill (about 20 years ago now :eek: ) but the longest I've ever been able to sustain full time work was about 4 years. You could be one of those whose symptoms don't get severe enough to stop you functioning (having said that, I don't have fibro, just have a lot of symptoms in common). That's not to denigrate what you're experiencing as that's the last thing I'd do, but while you still can - KOKO.

Sorry this has got a bit [a bit!? Ed.] long. I'll post this and then let the others get a word or two in edgewise.