Fibromyalgia 22 October 2008 at 3:21AM edited 30 November -1 at 1:00AM in Disability Money Matters 2.7K replies 83.5K views

Lindsey1948

Thought I would just introduce myself, I suffer from Fibromyalgia, and have just joined this forum. In 2007 I had cancer of the uterus and have successfully had it removed. I also have a walking disability caused by a fall in 1995. I also became diabetic last year. There has been a suggestion recently that FM/Thyroid problems (I have underactive thyroid)/Diabetes are all linked.

But life is good :j , and although Im disabled, I worked full time until 2002, then took 18 months off whilst I learnt to live with the FM, and then did a year part time as administrator at a local youth centre, I liked it so much I have been a volunteer there 1 day a week ever since, keeps me young thinking!! I officially retired in April this year, and although I receive pension and pension credit + DLA and a small amount of company pension, there are days when finances are tight. I lose most of my DLA to the motability people so that I can feel safe in an up to date car that I know wont cost me money to insure/tax or repair/service. (I keep the low rate care).
Just wanted to know if there was anyone else on here with FM, and any ideas for coping stategy's regarding energy levels/pain management etc.

natzini

I have FM, was diagnosed just under 3 years ago. I'm 26 and have managed to go back to work full time (teaching). I can't do much else apart from that, so my OH is pretty much the caregiver, cook etc. The fatigue is really getting to me at the moment, but then again I was also diagnosed with ME and an underactive thyroid.

Have any of you with FM seen Professor Davies? I'm hoping for a referral to him, just changed GP surgeries as the last one I felt as though I wasn't being listened to.

I try and pace as much as I can, I think that's why teaching is a good job for me, as in Secondary School we have the separate lessons. My workplace is very supportive, especially compared to the last one who wanted me gone as soon as my symptoms got bad.

anniequk

Hi all
I also have fibromyalgia and after years of struggling with it i have had to stay off work and am about to either be dismissed or pensioned I have a hearing next month to decide my fate. Dealing with the benefits system has been interesting to say the least.

I have been getting DLA for the last few years but glad to see this forum I have only been given £75.40 per week to live on with 2 teenage children so any help will be good. Nice to hear how other folk with FM are getting on and how they are coping
Annie xoxo

jansart

hi there i have had fibro for 4 years following a car accident. which came first the fibro or under active thyroid?
will add more at a later date, should you want to contact me [email protected]

natzini

jansart wrote: »

hi there i have had fibro for 4 years following a car accident. which came first the fibro or under active thyroid?
will add more at a later date, should you want to contact me [EMAIL="jansmail@hotmail.co.uk"][email protected][/EMAIL]

They diagnosed me with the Fibro and then after some blood tests last year (the tests before showed my thyroid was working fine) and put me on the Levothyroxine.

srichards

I have FM, was diagnosed in 2000.

Im not on any meds or anything, I just deal with pain by guzzling OTC meds.

It seems to be fine for weeks then I might get a flare up for a few days where Im hurting really bad, thwen I'll be fine again.

I work full time and am doing a masters full time, but as Im in medical sales I work from home a lot and so manage my work stuff as I need to, my employer doesnt know I have FM.

Swings and roundabouts really.

sharon59

Hi another fibro sufferer here- looking back have had it many yrs but diagnosed finally in 2002.Had over active thyroid in 1981 diagnosed -seems so many with fibro have thyroid problems as well.
some days ok others cant do anything but sleep.Am learning to go with the flow but does get me down a lot sometimes.
Will be nice to share experiences with others who understand-as we look ok people assume we are ok dont they!very hard to explain the constant pain and debilitating exhaustion.

sian-c_2

hi, i too suffer with fm. i was diagnosed 3 years ago and have had to give up work as a midwife as i couldnt cope with work a young family and fm.
i too am receiving dla but also loose most of it for the mobility car, which is my lifeline. i dont think i would leave the house if it wasnt for that!
I would like to see more help for people with fm, but feel it is becoming more well known. i would also like to see more help for those on dla as i feel it is one of those benefits that people seem to forget that we CANNOT work, not that we dont want to like some (!) (and i dont mean to offend as it is very few)
like people have said it is hard to explain the constant tiredness and pain we go through. but have you had accupuncture? it has worked wonders for me.:j

beeka

hi all, nice to see others with FM as I haven't met anyone with this condition in real life. I'm about to move back to our home town with husband to be near our family again for the extra support. I'm going to be starting a new job, for which I'll be taking a wage cut of a third, but it'll be worth it to be able to focus more on getting my pacing right. I've suffered with Fibromyalgia for about 18 years and only got diagnosed last year, along with arthritis and various other joint and bone problems. I'm finding the pacing hard as until fairly recently I just threw myself into things and flogged myself to death as I felt I 'should' be able to do everything. I turned 30 last year and with the diagnosis have finally had to acknowledge that there are some things I definitely can't do any more, BUT if I get the pacing right, I can manage to do the most important things.
On the money saving side, I'm going to re-apply soon for DLA as got refused before I had my diagnosis but hoping they will reconsider now I have names for everything :rolleyes:
I'm also a big old-styler (thanks Grandad for teaching me) and do the whole meal planning, batch cooking and so on. I would still be very interested to hear everyone's tips though as we're going to be living on a much reduced income from November onwards:eek:

poohbear59

I too have FM, I was diagnosed about 5 years ago, but my GP thinks I have had it for at least 26 years.I am on Incapacity benefit and DLA and have a mobility car. It has changed my life as I can now get out and about a little. I know it is oftemn difficult for FM people to get the benefits they deserve, especially DLA and I found this website really helpful.
http://www.benefitsandwork.co.uk/ You have to pay a subscription which doesn't seem very MSE but it helped me to complete those awful forms and get my DLA.

I was a teacher but was unable to get full retirement from teaching and I am full of admration for natzini for continuing to teach. I had to give up to have a life other than work,I was in so much pain and so tired that I didn't function at all at home. I also had no support from school who had me in a different classroom every lesson (teaching technology), and I had to carry everthing I needed from room to room.

poohbear59

beeka wrote: »

I'm also a big old-styler (thanks Grandad for teaching me) and do the whole meal planning, batch cooking and so on. I would still be very interested to hear everyone's tips though as we're going to be living on a much reduced income from November onwards:eek:

Our income has is now less than a fifth of what it was in 2003. I have to thank the Grocery Challenge
http://forums.moneysavingexpert.com/showthread.html?t=1183675&highlight=October+2008+Grocery+challenge
for helping me to focus on what I spend on groceries and I recommend it to anyone trying to live within their means. I am managing to provide for 6 adults on £300 a month. I can sometimes get it down to £240 but we do need a little treat sometimes.