Fibromyalgia Action UK
39,693 members51,817 posts

Is there anyone, anywhere who knows anything about how to treat FIBROMYALGIA?

For those of you who were able, I hope that you could enjoy some relief over the Xmas holiday period. Regrettably this grandpa had to decline family invitations to avoid being a nuisance to the adults and a kill-joy for the grandchildren.

The years drag by against a backdrop of shrinking horizons. One tries not to get depressed, but It requires a concerted positive effort. The relentless, protracted bouts of acute muscle pain, which leave you feeling as bruised as if you had been run over by a truck. I have an electric PROTEA hand massage vibrator which can be soothing at times, but one is frequently too sore to use it.

Have cycled through pretty well the full range of drugs, virtually all with unacceptable side effects - ranging from Amytriptaline to Fentanyl. I am currently on Zomorph 100mg. Diazepam and Oromorph as back up.This is only partly effective. I am up virtually every night as it is impossible to stay in bed. Tea and perusal of Fibro Action posts - the latter to make me realise that I am not on my own. Sometimes I wonder if half my symptoms are - as previously - just med. side effects.

I won't ramble on. I just get so frustrated and exasperated that in this 21st century, no-one, anywhere, knows anything about this totally debilitating scourge. Thank you for sharing my woes. An optimist might wish you all A Happy New Year!

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Hi there HADES Your definitely not on your own this xmas. I think it,s been a very painful time for many myself included :( I am sure the weather makes all our symptoms worse at this time of the year and for many central heating in the home can also have a bad effect. we are either freezing or over heating. We can't get out doors even into the garden so no exercise we become stiffer and more pain when we move. It's a very vicious circle.

There are so many death causing illnesses that have still not had a cure found to treat them sadly. At least it is known we can not die from fibro so I guess the money needed for more research puts us fibromites at the bottom of the pecking order. After suffering for 30 plus years and now been in a wheelchair for many years I too wish they could find a solution sooner rather than later. I will wish you a tentative happy new year :) xx

Momo

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Hi Hades. I can totally sympathise with you and get where you are coming from. The pain and fatigue are relentless and it does seem that there should be a little bit more that GPs can don to relieve our symptoms in this day and age. But we are lucky to have this forum where we can get the support and help from all the lovely people who are willing to take the time to offer us advice and reassurance. I do hope that your pain eases off a bit soon. Keep chatting here as everybody is interested and wants to help. Take care. Xx

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Hi Hades

Get exactly where you are coming from. Keep visiting the site as you will find lots of fibro folk who understand completely and you won't ever feel alone. Sometimes trying to maintain that positive mental attitude is a struggle but definitely worth attempting. The winter and post Christmas period is always difficult but at least the shortest day is behind us and as the days start to get longer hopefully we will all start to feel better. Wishing you a peaceful and pain free 2018m

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These have been my thoughts for some time now - I feel that the pharmaceutical companies do have the know how to make a pain killer which would kill all pain, whatever was causing it, but they know it wouldn't be a financial benefit to them - look how other medications would then become obsolete - they would lose out on so much money.

The other thing to think about it that pain has a reason .... if something hurts we will protect that part of the body. If it doesn't hurt we may do something which could cause more damage, because we wouldn't feel the pain.

These are just my thoughts, and I hope they make some kind of sense.

By the same token, I am with everyone else in wishing that they could find a cure for FM.

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Hi your probaly on right meds it is getting right balance .and strict paceing.the vicious circle there is lots on it.the only other thing if not tryed already .is chronic pain courses and wellbeing courses through gps .occupational therapy and physiotherapy and wellbeing teams at surgery .they go into the vicious circle in detail etc and help you deal with fibromyalgia in a different way .they last 8 weeks once a week with upto 10 people like yourself very helpfull.i would ask gp if any available .good luck

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You are defnot on your own ! I have had to turn family invites down the last 2 days as in way too much pain(in agony at the moment in wrists simply typing this! ) have had a other sleepless night- that’s why I’m on here so early (!) but it s my birthday today so determined to enjoy it. When I visited the pain clinic again couple of weeks ago the specialist simply said u know we can’t make this pain go away don’t u? I’m currently in tremendous constant pain so I can certainly relate. I will have to go now as my wrists are so sore(!) I was diagnosed in March 2017by rheumatologist . Hope today is better for u by the way ...

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Dear Avm43 - My God how one can identify with you! You seem to be a very determined, stoic young lady. With your own afflictions I really appreciate the support that you felt able to afford me. May I wish you a very HAPPY BIRTHDAY and a bearable New Year.

Yours, a very ancient "Hades"

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Hi there, I think we do get so frustrated it's hard to plan anything and some of us live day to day fibro had no level playing field as I say , it's always a shame when we cannot join in , I too am missing out in seeing my grandchildren today, cold weather again and snow for some I think that agrevates the pain for us ,at least with the warmer days you can sit outside and take in the fresh air , not my favourite time of year. It must be horrid for you with the sleeping pattern but like you say when you come chat on the forum you realise how many thousands are suffering too , take care if you would like to lock your posts so only our community can see them it normally generates more replies from members as then not open to anyone on the internet xx

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Sorry mate I am in the same boat, be glad to find someone with an answer. It appears to me if you are a too difficult to diagnose you get put into the file 13. I cannot remember how many tests I have had that have comeback as normal or borderline ok. Good luck in your quest.

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