Anyone with fibromyalgia?

tillytot41

Hi there i was diagnosed with fibromyalgia on Tuesday so just wondred who else here has it and if anyone has any tips on dealing with it.Ive found a couple of great websites just for fibro but i still will come on here as everyone is so kind and helpful.
I know ive got to keep positive(not always easy on a bad day)im seeing my doc on Tuesday to find out about what help there is for me like physio etc.Im also learning how to pace myself,have a busy family but am a single parent on my own.
Ive been put on lyrica but that was only tuesday and not seen any benefit just yet although i have slept a bit better although last night wasnt too good.
Anyway would be great to hear from anyone who is dealing with this illness.
Ali xx

jordan7j

Hi Ali, My friend has fibro, she has a young son, and finds it hard with stairs etc and lives in a flat on 5th floor.
Cant give much help, but understand how hard it is, I'm sure someone here knows lots, take care

jenzie06

I've got fibro secondary to RA. Had it 11yrs since I was 15. I'm now 5months pregnant with my first baby and to be honest it is quite difficult to manage.
I've always been told that the treatment for fibro is managing it but I do believe there are drug treatments now available. The best thing I could suggest is to get decent sleep. I've found you could sleep for hours but if its rubbish sleep its almost worse than getting a few hours of deep sleep.
For me, the fibro becomes more managed and the flares occur less and less as time goes by. You learn what sets it off and either plan for it or change you lifestyle to avoid the situation. You always have flares that will show up unannounced, which are frustrating as there is no apparent cause.
I didn't find physio for the fibro helpful. Doing regular exercise (such as swimming) is very good.

I hope this was helpful. It seems daunting at the start but things do become easier and it is possible to live successfully with this condition.

minky67

Hi, I got diagnoised with Fibro in oct this yr.Ive also got Osteoarthritis ( diagnosed aug 08 ) so im struggling quite a bit with the conditions. I have OA in most of my joints & i use crutches to get about.
Its difficult to control the 2 conditions as the bones & the muscles are screaming at you.Theres seems to be no let up for me.

Im under the pain clinic & i have been taking Gabapentin,Tramodol,Amptripyline (for sleeping/relaxing muscles )
Diclofenics (anti inflammatory ) & Oramorph for break through pain.
Im on a trail with the gabapentins,if there no good then i can change to a trail of Pregablins(sp )

Ive been refered to a neck specialist & i see him on wedsnesday.
Ive also been told to try pilates,read a book on CBT & to have a follow up appointment with the pain clinic.

The gabapentins combined with the Ampripyline help with sleep. & like you say a few hrs refreshed sleep helps get through the day.
I keep in contact with someone else that has Fibro so if you want to pm me feel free.
Take care
debs

harmony

tillytot41 wrote:

Hi there i was diagnosed with fibromyalgia on Tuesday so just wondred who else here has it and if anyone has any tips on dealing with it.Ive found a couple of great websites just for fibro but i still will come on here as everyone is so kind and helpful.
I know ive got to keep positive(not always easy on a bad day)im seeing my doc on Tuesday to find out about what help there is for me like physio etc.Im also learning how to pace myself,have a busy family but am a single parent on my own.
Ive been put on lyrica but that was only tuesday and not seen any benefit just yet although i have slept a bit better although last night wasnt too good.
Anyway would be great to hear from anyone who is dealing with this illness.
Ali xx

Hi Tilly

I am seeing my GP next week as my nurse thinks I have fibro! will let you know what has been decided and we can compare
Harmony

harmony

tillytot41 wrote:

Hi there i was diagnosed with fibromyalgia on Tuesday so just wondred who else here has it and if anyone has any tips on dealing with it.Ive found a couple of great websites just for fibro but i still will come on here as everyone is so kind and helpful.
I know ive got to keep positive(not always easy on a bad day)im seeing my doc on Tuesday to find out about what help there is for me like physio etc.Im also learning how to pace myself,have a busy family but am a single parent on my own.
Ive been put on lyrica but that was only tuesday and not seen any benefit just yet although i have slept a bit better although last night wasnt too good.
Anyway would be great to hear from anyone who is dealing with this illness.
Ali xx

Hi Tilly,
Well good news for me, I haven't got fibromyalgia My GP also said that sometimes people are diagnosed as having it when GP's, Consultants, or the rhummy nurse are not sure what is causing the pain :!: But he said to me, "you have RA of course you will be in pain, and you don't need to worry about having anything else" :!:
Sorry I can't help you any more than giving you that little bit of information
Harmony

tillytot41

Glad to hear you havent got fibro Harmony on top of the RA.However i wish your GP hadnt said what he did.Fibro is a very real illness highly likely to be a fault in the central nervous system which causes chronic pain anywhere in the body and also chronic fatigue.I'm sad your Gp thinks its a label given to people when they dont know whats going on because my rheumy who diagnosed me knew exactly what was going on.He also did a tender point test which is used to diagnose fibro and there are alot of other symptoms as well.I am in pain all over my body and i can barely walk,have trouble eating and i would like to tell your ~GP its very real indeed.
Ali

harmony

tillytot41 wrote:

Glad to hear you havent got fibro Harmony on top of the RA.However i wish your GP hadnt said what he did.Fibro is a very real illness highly likely to be a fault in the central nervous system which causes chronic pain anywhere in the body and also chronic fatigue.I'm sad your Gp thinks its a label given to people when they dont know whats going on because my rheumy who diagnosed me knew exactly what was going on.He also did a tender point test which is used to diagnose fibro and there are alot of other symptoms as well.I am in pain all over my body and i can barely walk,have trouble eating and i would like to tell your ~GP its very real indeed.
Ali

Hi Tilly,
Sorry to hear about your fibro, I am sure my GP wasn't making light of the issue, but as I have been having real problems with the rheumy nurse/chief warden, I think he just wanted to reassure me that I wasn't going to have anything else to worry about.
Harmony