Fibromyalgia

suep

bigzippy wrote: »

I'm a bit the same with the cast on and off business. Cross stitch is still ok, when I'm in the mood etc. However, if you fancy doing something like that, have you tried latch-hook rug making? The hook is much bigger as are pieces of wool that are involved. There's nothing really fiddly about it but it's very satisfying to do..?

Mums just finished her first rug and really enjoyed it, I might try it if I can find a cheap enough kit.

That's why I'm so worried about having kids...

Well I somehow got through another day, but I took her to visit my other son and his little boy whos the same age so they wore eachother out and I had a rest. I must admit I cant think how I ever managed my 3 although I was much younger and didnt have fibro then.
If you really want kids and you have a very supportive partner I would go for it, I know a couple of women in my local fms support group who have had babies and seem to manage ok.
sue

Unity

Careful_with_that_Axe wrote: »

Ello. Where is everyone?!
I was hoping Unity might have posted results of MRI.
I have a splitter of a headache today, but know it's a result of tiredness. Early night for me again, I think.

Hi CWTA and all,

Thanks for your concern. The good news is I got to see Transporter 3 at the cinema so I have had my Jason Statham fix for the week , went to the 11.30 a.m. screening so I didn't fall asleep once!

Saw the GP tonight and got the MRI results, he gave me a copy and - there's a lot more on here than there was five years ago. In short though reading between the lines - there's moderate facet joint degeneration at L3/4 and L4/5 with posterior bulges at both - and another cyst at S3 level. I have to go for a neck x-ray tomorrow then see him again in the New Year.

We talked about changing on to methodone and he suggested we leave it until after the holidays as for the first couple of weeks I'll need daily monitoring - evidently:rolleyes:. I'm glad that I got it confirmed, that if coming off the patches means I end up back in the wheelchair, then I can go back on them again. It's tough that no one knows the long term effects of these, as they were - up until fairly recently only prescribed for terminal use. If I have to go back on them then at least I can provide some data for future patients I suppose.

Sorry I am not making much sense, I am shattered - I even shouted at the cat (unheard of:eek:) so I'm off to get my head down.

Thanks again for the good wishes,

Unity

LameWolf

Unity, big (((HUG))) for you. I bet you're shattered! I felt tired just reading your post!:D

Sounds like your doc is well clued-up, which is good. Good luck with the neck X-ray.

Sorry. I don't know who Jason Statham is.

Careful_with_that_Axe

Thanks for the update Unity. Things sound complicated and I hope the neck x-ray makes things a little clearer and you can decide on a forward course of action you are happy with.

I took amy last night so caught up on some sleep, thank goodness. Uncle arrived from US last night, so will see him later this afternoon. He's a psychiatrist and lets you know it all the time - deciphering any gestures you make - gets a little wearing sometimes.
Had a nice boost this morning with a lovey Xmas card from a chap I know thanking me for kindnes in the last year. Warmed my heart.

BZ, I am aware of my limitations and I'm not the sort of person to "do" deferred gratification, so giving up smoking at the mo' is unlikely. I use it (like you may have) to make me go to the loo before I have to go out, so I know I'm safe when I'm not near a loo.
Tis partly my fault it's playing up as I ate some chook that was a few days out of date.

I've got a lot to do today, so one more cup of tea and then I will get started.
Hugs to all.

suep

Hi Unity,
Im sorry that your back has got worse but I guess you knew this anyway without the scan. So have you got the choice of either staying on the patches or having the methodone ? I wouldnt know what was the best out of these two or the safest, they are both pretty extreme and I suppose the main problem is that if you get used to these sort of drugs and they stop helping, were do you go from there ?

I'm not going to the pain management course today, Im in a flare from the last two days with g/d and Im laying in bed with my latop and the telly on watching Xmas cooks, they are cooking yuk things like squid :lipsrseal which dont sound very festive.
Hope everyones ok today
sue

Unity

anne211981 wrote: »

My husband suffers with fm, hes takes amitriptlyene 50mg 3 times a day along with tramadol (morphine based) 2 3xsa day. sometimes the pain is that bad he has to sleep it off till he can cope, he also has a throid problem underactive and his meds keep going up with each blood test. There not working, hes also border line diabetic. he makes himself cope on most days and tries to get on with life. He also has a fused lower spine which causes nerve problems with his legs so maybe the fm doesnt help with that. he only gets lower care dla and has done for 6 years. He got that before begin diagnosed with fm. were in a constant battle with the dla to up his benifit. were in an appels process where there currently looking at either upping it or taking it away totaly. He cant walk harldy without an aid he can barely breath and were now told he may need a respirator. Im so worried that we may lose our battle with the dla and loose the benifit. Im going back to work next year after having 2 children, so he'll need help or the extra to help him get out and about. Im not looking to get a car i just want justice for him.

Hi Anne,

I just wanted to say - do be sure you get help preferably from Welfare Rights with the DLA. CAB help seems to vary depending on the volunteers where you live, you could also try DIAL. It is possible to lose the benefit (sorry to say this) - but if he is coming up to the time to re-apply then it would be looked at in it's entirety anyway, so theoretically he could either lose it or alternatively get a better rate on re-application.

I should also mention that if you have had supportive letters from medical specialists in the past - you should ask for these to be considered with the current application as they didn't do this when I applied, but rules may have changed. Give as much information as you can, on everything that affects his day to day life. They are not so much interested in what you have, but how it affects you. For instance if he has bother with his hands then everything from getting meds out of blister packs and child proof bottles to trying to lift a pan would affect his rate for care. I've said it before, but the legislation says that you must be able to prepare a meal from scratch - cutting up meat, peeling and chopping veg, lifting pans etc. etc. so if he can't manage this he's entitled to benefit. As far as walking is concerned if he has pain on starting to walk, state this and also state how far he can walk before having to stop. Don't forget to include how his condition affects his ability to cope from a mental aspect too - as the hopelessness and lack of a cure for FMS is incredibly depressing and debilitating.

It might be worth mentioning Durogesic Pain Patches to his GP as they certainly helped me to get out of being in the wheelchair full-time. Although as you can see from previous posts - I do worry about having to use them long-term.

Hope this helps,

Unity

code-a-holic

Hello, i also have FM. Its been brought on as an after effect from a car accident 6 years ago. I've been for my first chiropractor appointment and my joints and bits of spine are all over the place! Im a bit down really after having someone tell me everything thats wrong with me! Hospitals seem hopeless with back problems so it is nice to have someone come up with an action plan rather than hand out more pills.
Im a mother to 3 under 7's and am pregnant, being pregnant feels like the only useful thing i can do with my life while living with the pain. Gosh, cant believe i just said that! lol.
I get DLA and incapacity benefit at the moment which of course are a great help. And i couldnt live without the motability car. My hip pops out of the socket if i put on the clutch so an auto is fabulous!

I would love to read from busy mothers who manage to be super mum despite their limited mobility and constant pain.

Careful_with_that_Axe

Welcome codeaholic and congratulations on the pregnancy.
You're a sucker for punishment aren't you!

I can't help you regarding being a super Mum as I am merely an earth mother and surrogate mother to a cat *grin*.

I'm sure there'll be someone along who can talk about being a Mum with Fibro problems.

Careful_with_that_Axe

p.s. I thought the thread would be empty and I only sneaked in to put whoopie cushions on S/e, BZ and Raeh's chairs for when they come back

bigzippy

code-a-holic wrote: »

Im a mother to 3 under 7's and am pregnant, being pregnant feels like the only useful thing i can do with my life while living with the pain. Gosh, cant believe i just said that! lol.

I would love to read from busy mothers who manage to be super mum despite their limited mobility and constant pain.

Hi Code-a-holic. :wave: Welcome. And congratulations! :j
I'm intrigued, as I'll be getting married (quiet guys ) in September and OH is using scary phrases like "this'll be no good when we have kids" in a less than for off sense :eek: I really want kids but I'm scared, to put it bluntly. I've read on some threads that Fibro symtoms can decrease/virtually disappear during the pregnancy and sometimes into the breast feeding...have you found this at all? The other thing I'm worried about is keeping up with kids while I'm so knackered and weak. So I guess my question really is: how do you manage?