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  • FIRST POST
    Lindsey1948
    Fibromyalgia
    • #1
    • 22nd Oct 08, 2:21 AM
    Fibromyalgia 22nd Oct 08 at 2:21 AM
    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 , 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.
Page 1
    • natzini
    • By natzini 22nd Oct 08, 5:21 AM
    • 560 Posts
    • 5,634 Thanks
    natzini
    • #2
    • 22nd Oct 08, 5:21 AM
    • #2
    • 22nd Oct 08, 5:21 AM
    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.

    Un sou est un sou
  • anniequk
    • #3
    • 22nd Oct 08, 6:43 AM
    • #3
    • 22nd Oct 08, 6:43 AM
    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
    • #4
    • 22nd Oct 08, 8:01 AM
    i have it too....
    • #4
    • 22nd Oct 08, 8:01 AM
    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 jansmail@hotmail.co.uk
    • natzini
    • By natzini 22nd Oct 08, 9:52 AM
    • 560 Posts
    • 5,634 Thanks
    natzini
    • #5
    • 22nd Oct 08, 9:52 AM
    • #5
    • 22nd Oct 08, 9:52 AM
    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 jansmail@hotmail.co.uk
    Originally posted by jansart
    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.

    Un sou est un sou
  • srichards
    • #6
    • 22nd Oct 08, 10:57 AM
    • #6
    • 22nd Oct 08, 10:57 AM
    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.
    Last edited by srichards; 22-10-2008 at 11:01 AM. Reason: wrong date entered
  • sharon59
    • #7
    • 22nd Oct 08, 11:07 AM
    • #7
    • 22nd Oct 08, 11:07 AM
    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.
    this money saving is such fun
  • sian-c
    • #8
    • 22nd Oct 08, 11:28 AM
    fm
    • #8
    • 22nd Oct 08, 11:28 AM
    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.
  • beeka
    • #9
    • 22nd Oct 08, 11:37 AM
    • #9
    • 22nd Oct 08, 11:37 AM
    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
    • poohbear59
    • By poohbear59 22nd Oct 08, 11:50 AM
    • 4,820 Posts
    • 55,754 Thanks
    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
    • By poohbear59 22nd Oct 08, 12:22 PM
    • 4,820 Posts
    • 55,754 Thanks
    poohbear59
    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
    Originally posted by beeka
    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+G rocery+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.
  • karol0468
    fibromyalgia
    Hi to all, I have been diagnosed resently, after being told I suffered from M.E. for years untill I started getting unexplained pain a simple blood test and after years I am finally told it is FM. I have been started on new medication which is an eplileptic drug but blocks the nerve signals to the brain to help with the pain, so far so good. I also take painkillers 3 times a day. I have learnt the hard way about pacing and you have to do it to be able to live a semi normal life.Some of you refer to DLA how do you get this also mobility cars can anyone give me more info on this it would be helpfull. hope you all are well at the moment.
    • zzzLazyDaisy
    • By zzzLazyDaisy 22nd Oct 08, 2:39 PM
    • 12,134 Posts
    • 18,762 Thanks
    zzzLazyDaisy
    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 <snip>
    Originally posted by jansart
    Hi Jan, just a thought - it isn't always a good idea to post your own personal e-mail address on a public forum, as there are some strange people hovering around in the ether, sometimes (regluar posters excluded, of course!) I don't know if you are aware, but people can pm you (private message) through this site. You might want to edit your post.

    With best wishes

    Daisy x
    I'm a retired employment solicitor. Hopefully some of my comments might be useful, but they are only my opinion and not intended as legal advice.
    • poohbear59
    • By poohbear59 22nd Oct 08, 2:53 PM
    • 4,820 Posts
    • 55,754 Thanks
    poohbear59
    Some of you refer to DLA how do you get this also mobility cars can anyone give me more info on this it would be helpfull. hope you all are well at the moment.
    Originally posted by karol0468
    I think you need to phone the benefits office in your area and they will be abe to tell you about how to go about applying. Be warned though it is about 20 pages to complete. I got help to write it from my daughter and the disability employment advisor, and I and DD used the website I listed previously.
    Last edited by poohbear59; 22-10-2008 at 3:08 PM.
  • lipz57
    hi

    im new here and have fibro for 4 yrs ,im very disabled due to that and other things osteo athritis ,sjorgens syndrom which dry thing up like mouth nose etc , .

    but i make the best of life that i can .


    rivka xx
  • emilyt
    Another fibromyalgia sufferer here. Also suffer from hemiplegic migraine as well as a few other ailments.
    Was diagnosed with fibro when i was 32 i am now 40.
    I take each day as it comes and try to pace myself to make the most of my life.

    So glad this board has been set up. Thankyou.

    Welcome to lipz57.
    When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile
  • judithm
    Is It Fbromyalga?
    I have Ataxia and two bouts of breat cancer, Then they decided that I had FM as well. My husband found a book FM for dummies, ( the yellow and black ones - like windows for dummies etc) At the very end of the book, they recommended to get your thyroid tested, because underactive thyroids give similar symptoms. The book was right - my thyroid wasn't working and once the doctor got my meds right I felt a whole lot better. I still hurt all over, but I can stay awake for a whole day!
  • sappersmum
    My names Jan too - I have suffered from FM for nearly 10 years now - having to give up work and get DLA...... have to take each day as it comes - some days cant get up and others manage to get up and potter about then suffer the next day - i pace myself as best as i can but some days just want to be 'normal' and do too much.... I always have to suffer the consequences.... well dont want to go on but you can always contact me on here if you want a long term sufferer to chat to....
  • SteveCat
    I have been diagnosed with FM this year and I cannot believe the amount of people who have it alongside Thyroid problems. I know given my symptoms I have had it for many years and really its all about coming to terms with them both and learning to cope.
  • rosybunny06
    Hello folks, I have been diagnosed with Fibromyalgia, M.E./Chronic Fatigue Syndrome, Depression and IBS. I have been off work since Oct 07. It has taken years to get these conditions diagnosed and has been such a relief that I am not just going loopy! It is also a nightmare fighting for social security benefits, DLA turned me down several times but I have recently been successful and have been awarded middle rate care but no mobility component, even though like the rest of you sometimes I can't get out of bed never mind push a trolley round the supermarket or do a full days paid employment. I am also getting short term Incapacity Benefit. I am on anti-depressants, mebeverine and over the counter ibuprofen and paracetemol & codeine. I also take Diazepam on a really bad day. I also have sleeping tablets but they don't work very well and make you feel rotten the next day.
    I am only 35 years old and people have a hard time "seeing my illness". They don't realise that when you do manage to go out it has been a real struggle to do so and don't realise you may have slept all day just to scrimp up the energy to try and be social, and also you will probably be in bed for the next two days trying to recover.
    I am grateful this forum has been set up, it always helps to know that you are not alone with your struggle. It really does not help when people say "you look okay to me" and the other classic "there are people worse off than you"!!!! Well that was a lot of typing for me so I'm off for a rest! Good luck to all my fellow sufferers.
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