Fibromyalgia 22 October 2008 at 2:21AM edited 30 November -1 at 12:00AM in Disability Money Matters 2.7K replies 83.9K views

gipsie

I have FMS , there are lots of support groups that you can join . I do run one myself ,Ii will put the link on here for you , not sure if I am allowed but they can always delete this post. My group is http://groups.msn.com/HelpforFMS.
Hugs gipsie
xxx

septemberblues

beeka wrote: »

Anyway, sorry, rambling on, the question I really wanted to ask is of those of us on amitryptiline - have you found you've gained weight or have a swollen tummy? I had my gallbladder taken out last year and then managed to put some weight on which I needed to as I was too skinny. However, I now have a very swollen tummy and my face is very round (and I heard that some heavy drugs can make that happen) and I was just wondering if anyone else had experienced the same and whether it's likely to be the drug or not - I'm not fat but I can't get my tummy to deflate! :rotfl:

Ta for reading and feel free to ignore my ramblings if I'm too boring :D

Im on amitryptiline 150mg and yes, I have put on a little bit of weight, but my face gets puffy sometimes at this dose, I think it could be water retention or something, I read somewhere that if you're on ami you should avoid salt, as that's what makes you puffy IYKWIM.

redbull08

Hi
I have FM
Ive been in a few car accidents (not my fault), last one car was a write off, guy ran into back off me
i never related FM to accidents
also have LCIS (4 OPS) & now thyroid nodules
i go for needle biopsy on thurs, but they say my thyroid is ok?
can you get DLA for FM alone?
i have arthitis & IBS as well as other ailments.
im tired ALL the time, no energy, live with a LOT of pain
i am going to try & take a job as Ive not had benefits.
great thread thanks

redbull08

nearlyrich wrote: »

I have FMS too was diagnosed in 2005 after a bad patch where I had flu like symptoms then pains everywhere for weeks. I still work but like another poster I work mainly from home so I can manage my work around the bad days.

.

i feel like ive always flu, what work can be done from home, ive always wanted to ?

philnicandamy

redbull08 wrote: »

i feel like ive always flu, what work can be done from home, ive always wanted to ?

I've just started on the path of web page design & IT security working from home...find its far better now than having to worry abiout how I manage a normal working day

poohbear59

Careful_with_that_Axe wrote: »

:hello: Hello all.
I don't have Fibro (well, that's been diagnosed anyway!), but have Lupus, MCTD, Lupus and T-Cell Lymphoma.
I understand the suffering you all have as my pain seems very similar to Fibro.
Can I be an honorary member of the group please?
just read about the weight gain with Amytriptiline - great news on top of my Steroid induced hunger! Have just started taking Amy for muscle spasms and headaches (not yer run of the mills - really crippling).
also have a stock of Tramadol, Co-Codamol, Co-Dydromol, diclofenac and Paracetamol. the only thing I found really effective was Co-Praximol and they took the damn thing off the market! :rolleyes:
I was convinced the "mind fog" was just me, so am slightly comforted by the fact that it isn't iykwim.

Just yesterday I had to explain my pain and other symptoms by saying it was similar to lupus but not the same. Your stock of drugs reads like mine. I have just started on steroids too so I hope I don't gain more weight, I don't think my little legs can carry any more extra :eek:.

Yesterday a friend told me that some people who are disabled can get a discount on electricity costs. I have e mailed my power provider and I will post what I hear in reply.

Careful_with_that_Axe

There's a thread on savings on energy costs on this board. and info on many other discounts I wasn't aware of.
Weight gain and hunger with steroids does largely depend on the dosage. For me it's a see-saw. If I take more steriods, I take less painkillers and vice versa.
Obviously, the smaller the dose of steroids the better in the long run. I manage on 5mg of Prednisolone a day, and try to take as few pain killers as I can.
Athough, that being said, my monthly script comes to me in a carrier bag and I save money on my annual prescription pre-payment in the first month I use it!
And I'm very, very lucky to have a fabulous GP who is incredibly supportive .

p.s. I've come to the conclusion that most AI problems have overlap symptoms. Also, a family history of AI probs makes it more likely you develop one. My Mum had SLE and also developed a lymphoma.

raeh

I think the hardest thing for people to understand is the fact that you are in constant pain, all day, every day and that you are so exhausted you could cry sometimes? I have friends who as caring as they are, they just cant understand that an early night wont help me, in fact that makes it worse as i have to then unstiffen myself as iv laid longer in bed.

I have a good friend that i have met online who also has FM and we make each other laugh every evening on yahoo chat, telling each other where our pains are today :rotfl:

As someone else said this thread is nice, as it isnt all people telling you how their pains are worse than yours, as so many fibro 'help groups' seem to be.

thank you everyone for being here

gipsie

raeh wrote: »

I think the hardest thing for people to understand is the fact that you are in constant pain, all day, every day and that you are so exhausted you could cry sometimes? I have friends who as caring as they are, they just cant understand that an early night wont help me, in fact that makes it worse as i have to then unstiffen myself as iv laid longer in bed.

I have a good friend that i have met online who also has FM and we make each other laugh every evening on yahoo chat, telling each other where our pains are today :rotfl:

As someone else said this thread is nice, as it isnt all people telling you how their pains are worse than yours, as so many fibro 'help groups' seem to be.

thank you everyone for being here

Not all Fibro groups talk about their pain everyday or try to out do each other on how much pain each of us is in that day,we do have loads of fun , chat about other stuff , play games. We also on my group have loads of info to help you to cope with your FMS and info to try to explain to people how your FMS effects you in your daily life. You should give us a chance we maybe able to help you.http://groups.msn.com/HelpforFMS
Hugs gipsie
xxx

POLO_BINT

Morning people!!! Can't believe I am up, showered, dressed and have my make-up and hair done already!!!! OH thinks i'm losing the plot as I am never up and about "properly" until gone midday!!! Woooohooooooo!!!! Just need to clear the ming fog now and i'll be set for the day! After catching up with all your posts early hours of this morning, I have decided that I am going to try not to moan once today! (need to give OH's ears a rest I think lol) So... mission is to see how long before I end up reeling off each and every part of my anatomy which is hurting Its gonna be tough, I have commissioned OH in to timekeeping! I think half the time I say to OH where it all hurts may be out of habit! I am totally fed up with saying to him i'm in loads of pain when he asks how I am feeling. I know he understands and knows i'm in pain all the time and in every part of my body, so have decided it is pointless moaning about it all the time.... So here goes..... Have a fab day everybody!