Is this it?.....

[Empress365]

I feel as though I’m in a bad dream and when I wake up I’ll be pain free & walking strong. Sadly that has not been the case. I was diagnosed with fibromyalgia & hyper mobility about 3mths ago. However I’ve been suffering with the pain for the last two yes. My GP’s have been no help. I keep being told that it’s all about pain management.

There seems to be no reason or rhyme to this condition. I never know from day to day weather or not I’ll be strong enough, pain free enough to go to work or just to get out of bed. I’ve always been very independent & out going. Too becoming a prisoner in my own home. I feel as though loosing my mind..

Is this normal with condition?

How do you plan ahead?

How has your job been affected?

Has your employer been understanding?

[Kitten-whiskers]

Hello Empress365,

So sorry you are having such a bad time of things. It is no suprise that the doctors have not been any help, and in many cases can make it worse (they did in my case) I stopped believing them when they said I just had to live with it. I used to be nearly housebound, the pain was unbearable, my body was definately at war with me. I had autoimmune antibodies which I was told could never be got rid of, once your immune system started attacking they thyroid there was nothing that could be done, to the doctors complete amazing I no longer have these antibodies.

I am a strong believer of self help, as you can not reply on the doctors, I did have to change lots of things, and generally improve my health overall (not just focus on one condition) once my body was stronger in other ways, it meant I was able to study and learn from people who believed you can recover and thankfully I am doing so much better - I work full time, go out walking, use the treadmill, do yoga and lift a few light weights, keep up with all the housework.

I know it feels quite helpless at the minute but if you slowly lighten the load, your body can improve and you body can help heal

Best wishes

Debs

[rosewine]

I found the first two years the worse as I was railing against not bing able to do the things I could do before. I also lost a job as an advisor to a charity which I had given my heart and soul to and loved doing which I think was the most distressing part. My husband had had to give up work after a mental breakdown the previous year which added to the stress. I think I went through a kind of grieving process and thinking if I miss this, that or the other the fibro would miracously disappear.

All the medics I have seen from my gp who I must admit I trusted implicitly to the pain specialist said it was unfortunately a matter of accepting the life I had now and trying to live it to th fullest. My new gp says exactly the same. If I am honest I was sick of them saying the word "pacing" to me but now I realise they were right and when I forget that cardinal rule I suffer for it.

I did ask if there were any alternative treatments apart from even more painkillers. I saw a physiotherapist who gave me some exercise some helped some made it worse but have done the one that helped primarily the core ones ever since. He got me 6 sessions of hydrotherapy which I thought initially was making matters worse but after three sessions suddenly realised my walking was better but unfortunately only 6 sessions were allowed. The physio who took them was fantastic and he said that he felt someone with fibrom needed probably 18 months to get long-term improvement as it was like re-education of the body. I was also offered acupuncture the NHS acupuncture didn't help but I now pay privately someone versed in Chinese medicine/acupuncture which helped pain levels and fatigue. I also stick to a healthy diet trying to keep my weight stable and try to get some exercise everyday possible even if it is only a short walk.

I certainly feel I have more tools in my locker now and when I have a bad flare try to tell myself that this too will pass. I have really educated myself on fibro so also find the bizarre symptoms less frightening. Good luck on your journey.x

[Entela15]

My life has completely changed over the last three years. I'm simply a shadow of the person I used to be. I don't like what I've become, weak, vulnerable, fed up. The only thing that keeps me going is hope for better days. Never give up hope.