Thank You And Advice Request Please?

Would like to thank you for all your help before when i asked how you get people to under stand told my mum and dad about ffibromyalgia and showed them a video that someone said would help my mum has been looking on the web about fibromyalgia she found out that doing exercise and lossing weight and not smoking will make me better she thinks this is going work better that any pain killer. Could someone please let me know if this is true the last couple of weeks has bern hell my gp has put me on oxycontin is this a good medecation to be on? This post must sound mad put my mum is one of those people that if you can not see it you are fine .

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  • I'm sorry to hear you've been diagnosed with fibro.

    Exercise can help some people. Everyone is different. I try and do light exercise like walking and I do housework with a bit more oomph behind it. Although I know that I will pay for it the next day. I'll be either completely wiped out and want sleep most of the day away or be in so much pain it makes any normal activity very difficult.

    Unfortunately, I am now unable to work and am applying for ill health retirement. I've been out of work for just over a year. Thankfully I receive benefits, PIP abs ESA.

    If you have a look on the Internet again do a search for "A letter to the normals" it will e plain in a much more emotional way the effects of fibro on the sufferer and family and friends. You may well find that this letter explains to your Mum in a deeper way how fibro effects you daily.

    Sorry about the ramble, but I have to do this to try and make sure I include everything I want to say.

    Good luck with this and I truly hope it makes things easier for you.

    You'll find the best way of dealing with fibro over time and in your own way.

    There is a magazine available, don't know if you subscribe to it already, 'The Fibromyalgia Magazine 'from UK Fibromyalgia.

    Take care Becky. X

  • Hi Becky

    I just googled "a letter to the normals". Thanks for suggesting that to sjeded, it's excellent. It applies equally to anyone with ME (I have both ME and fibro) or any other fatigue based chronic illness.

    Margaret.xx

  • Thanks for your reply will have alook into both of your ideas thankshope you have a pain free cChristmas

  • Hi both, it is a good way of getting across how we feel, as I expect you're the same in that explaining how you feel is so difficult. I can never find the right words and end up frustrated 8n stead!

    Wishing you both a fantastic and pain free Christmas too.

    Warm wishes, Becky. Xx

  • By her reasoning that would mean I shouldn't suffer with fibro as I don't smoke and I'm a size 12.. The whole point is we can't exersise, the strength isn't there, getting dressed is impossible.

    My sister had similar thoughts until she tried to take me shopping on a bad day, I ended up sitting on the supermarket floor, she got it then, has been amazing since..

    Explain it via the spoon theory, that may help.

  • When the physiotherapist suggested losing weight and exercising I told him I was a size 12, went to the gym regularly, went running and had a 2 mile (fast as I was always late lol!) walk to work every day when I was struck down and struggling to walk within a week. He couldn't answer my question that if I developed Fibro doing those things, how could doing them now help to cure it!

  • Not a mad post at all. Becky's answer is pretty comprehensive.

    Although you got fibro doing exercise, it's doubtful it was caused by that. It's true that moderate motion exercise (ie NOT training for a marathon) helps, so don't give up moving. I have no experience of the meds so cannot comment. It looks like you're pretty together and making the right kinds of moves.

    I wish you luck.

  • I'm under the pain clinic again at the moment which includes the physiotherapist who is great a very aware, experienced and patient man. His emphasis is on movement not exercise, your not trying to build muscle or loose fat but keep your joints moving. I had not realised before seeing him how rounded my shoulders had become he called it the chair shape! Anyway have been having problems with my neck so have been doing gentle exercises on wrists, arms and shoulders and has made an improvement without touching my neck! The trick is little and often keeping full joint movement, I'm hoping to do tai chi with them after this. So movement works for me, at a paced rate, but exercise would put me in bed for the next day or two even if I managed it.

    Time has been the only explainer to loved ones and let them see how much of life fibro has taken. I'm afraid I've given up on trying to explain or even talk about it apart from to other chronic pain sufferers. Not helpful I'm afraid but my experience.

    Best wishes

    Patrick

  • I do a daily physio routine but it is only very gentle exercises whilst lying on my bed as anything strenuous can bring on a bad flare. So if you are considering any exercises please take care not to do anything too much. Please take care of yourself.

    All my hopes and dreams for you

    Ken

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