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Fibromyalgia Awareness Day

Last post 10-21-2009, 9:32 PM by lindseym. 232 replies.
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  •  04-10-2008, 12:19 PM 687301 in reply to 687283

    Re: Fibromyalgia Awareness Day

    Hi I'm new to this so bear with me! I was diagnosed with fibromyalgia last summer after feeling exhausted since my son was born 5 years ago. I was prescribed amitryptiline which just doped me up and now I'm on dosulepin (dothiepin) which is also ineffective. I was also diagnosed with an underactive thyroid 3 years ago so I'm on thyroxine. I've lost my career as an ambulance paramedic and we are struggling to cope with two small children on just my husband's wages - apparently I'm "too fit" to get incapacity benefit so, after working all my adult life, I now don't receive a penny - glad I paid my NI and tax for 21 years!!!!!!   I'm not sleeping, aching all the time, and recovering from a broken ankle which I had to have surgery on to pin and plate it. And on top of this my mother is convinced I just need more fresh air!!!!!   Anyway I've found a support group nearby so I'm going to pay them a visit when (or if!) I'm off my crutches. Glad I've found you lot to moan to - I'm sick of trying to explain to people how bad I feel when they think I'm a hypochondriac.

  •  04-10-2008, 12:26 PM 687303 in reply to 687281

    Re: Fibromyalgia Awareness Day

    hi do you know if there is a support group in bournemouth or is there anyone reading this in dorset who has this illness
  •  04-10-2008, 12:44 PM 687305 in reply to 687288

    Re: Fibromyalgia Awareness Day

    I am 34 and was diagnosed with Fibromyalgia a couple of years ago, and I seem to have received better health care once diagnosed than many others.  I was given two types of antidepressants to help me sleep once I finally got into a decent sleep pattern, i.e. bed at 9pm and up at 7.30 life seemed to improve.  I also managed to reduce the number of sleeping tablets to about three a week, once the sleep pattern was established.  I used to sleep during the day, when I came home from work, by having proper sleep at night I managed to stop the day sleep, it was a viscious circle, as if you sleep during the day you don't sleep as well at night, so I would recommend you get your night sleep sorted as it helps a lot. 

     With regard to pain, I was given a number of painkillers which I used to take regularly, approx 17 a day !, I was prescribed hydrotherapy which was excellent and this greatly improved my movement, and I have continued to try and do exercise which does help although it is painful initially, but it does improve over time.

    I was made redundant in December and only take the painkillers occassionally now, but I have continued to remain active although recently had an unconnected ankle operation, which means the pain is starting to return, and my sleep pattern is not as good as it was, but at least I can manage it now, and find that when having good days to do as much as possible, and bad days to try and rest.

    The physio I saw explained the disease to me as toxins in the body that attack the joints, and the lack of deep sleep means that "endorphins?" are not released to attack the toxins, but that the endorphins are released when exercising and therefore reduce the toxins. I do gentle exercise where possible and have found that this does help.

     However, I do agree that people think you are making it up because you look well, but there is a letter on one of the websites can't remember which one, which explains how I felt, I printed this off and gave friends and family a copy and the response was much better.

     

  •  04-10-2008, 12:44 PM 687306 in reply to 687301

    Re: Fibromyalgia Awareness Day

    Moonrose,

    If you are unable to work due to disability, you will likely start on Income Support and eventually be moved onto Incapacity Benefit. I have a different problem, but this is my experience. Firstly, you need to get a doctor's certificate, then apply for Incapacity Benefit via the telephone, where you will be asked a number of questions. If you've been through all this and been refused, you can appeal the decision (the Department of Works and Pensions should be able to direct you in the right direction if you give them a call). If this fails, then you need to contact your MP.

  •  04-10-2008, 12:53 PM 687309 in reply to 687301

    Re: Fibromyalgia Awareness Day

    just read your post, keep going ,there are people who understand what you are going through .I started to be ill after the birth of my 2nd son. I am 54 and was only told I had underactive thyroid 3 years ago and now on thyroxine. This hasn't helped muscle pains so considering Corvalen supplements.I too have had many comments over the years like you,e.g. "you need to get out more. and pull yourself together". "get something to take your mind off it". You try to be kind to yourself as i am sure you are kind and caring to your family and friends.I can tell you are definately not a hypochondriac.You have a good moan girl,we understand.regards J.
  •  04-10-2008, 12:58 PM 687310 in reply to 687301

    Re: Fibromyalgia Awareness Day

    Hi, I've been suffering with Fibromyalgia for at least 15 years, it started after the birth of my daughter, but only diagnosed 3 years ago, like you I felt like I was going mad.  Your story is like listening to me.  I get excited when I here Fibromyalgia mentioned on the telly, how sad is that.  Please don't give up.  Keep fighting for everything, benefits in particular, if you get rejected, then try again.  This illness is very real.  I've tryed the support groups, but it was'nt for me, it had been going for a long time and I felt a real outsider, I hope you have a better experience.  I see a great guy now once a month at my GP's surgery, he's a mental health nurse, he's been my lifeline. 
  •  04-10-2008, 1:01 PM 687312 in reply to 687301

    Re: Fibromyalgia Awareness Day

    I have suffered with Fibro for years and have tried several methods to help.  I can now cope with painkillers, sleeping pills, antihistermines and anti acid treatment.  However, I have recently come across some information regarding the connnection between fibro and underactive thyroid.  There is a physician in American that specialises in Fibro and he treats his patients for underactive thyroid and his results have been very positive - even if the patients have been tested for thyroid but show no signs in the tests.  I have cross referenced my symptoms with those of an underactive thyroid and have found that there are quite a few that relate more to a thyroid problem then fibromyalgia.  The problem that I have found is finding a doctor who is willing to delve into this new thinking.  Personally I would be willing to try anything to make me feel better. 
    Filed under:
  •  04-10-2008, 1:14 PM 687314 in reply to 649818

    Re: Fibromyalgia Awareness Day

    HELLO just seen your post.I watched This Morning today and was amazed. I became ill after the birth of my second son.I was finally told I had under active thyroid 3 years ago, but I am now 54.Nothing has ever helped muscle and joint pain though.I noticed you say you sometimes have difficulty swallowing. I have had this sometimes for the last 2 years but didn't realise there could be a possible connection.Have you tried Corvalen yet. Hope you get better.Glad I saw your post as it gives me hope to realise I am not alone feeling this way.Regards J.
  •  04-10-2008, 1:23 PM 687316 in reply to 687314

    Re: Fibromyalgia Awareness Day

    does anyone know where i can get corvalen from? I looked online..
  •  04-10-2008, 1:27 PM 687319 in reply to 687316

    Re: Fibromyalgia Awareness Day

    Look for D-ribose not just Corvalen. Corvalen is just the brand name
  •  04-10-2008, 1:31 PM 687324 in reply to 687319

    Re: Fibromyalgia Awareness Day

    thanks lindseym
  •  04-10-2008, 1:38 PM 687329 in reply to 654490

    Re: Fibromyalgia Awareness Day

    Hi Jackie,

     There is no support group where I live either are you able to advise me on how you went about making a new support group.  I have been diagnosed with ME/CFS/FM.  Living in a small Island I am not sure how to go about setting up or even finding other people to talk to.

     


    Alison

  •  04-10-2008, 1:55 PM 687336 in reply to 687329

    Re: Fibromyalgia Awareness Day

    One good way to start is to get your local paper to print a letter from you asking if there are other people locally with FM or ME who would like to meet up. Put a phone number and you're away!
  •  04-10-2008, 2:15 PM 687346 in reply to 687314

    Re: Fibromyalgia Awareness Day

    Hi just read your posting. I'm so glad I'm not on my own concerning swallowing. I've had FM for years and for the past 3 or 4 years I've sometimes a problem with swallowing. I find I'm going to panic when it happens so I tell my self to relax and really concentrate on swallowing. It almost feels like I'm suffocating and it's absolutely terrifying. I haven't mentioned it to my doctor because it's just one more thing!! After reading your post I will mention it. My doc is brilliant!! Regards Patriciat
  •  04-10-2008, 2:15 PM 687347 in reply to 687271

    Re: Fibromyalgia Awareness Day

    There is a FM support group for the Vale of Glamorgan with 10 members 1 of whom lives in Cardiff.  It is affliated to FM UK or you could start a support group yourself? Statistically there would be many people in Cardiff suffering with FM as it affects 2% of the population.

    Tim

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