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Re: Getting better from FM ?

PostPosted: Tue Apr 16, 2013 11:08 am
by Iceskatemum
By "burn itself out "does she just mean we all go away and stop bothering them!

Have only found one scientific paper and or clinic that claims it can "cure" CFS/FM. ...... Dr Derek Enlander NYC

Does one claim a cure make?

Re: Getting better from FM ?

PostPosted: Tue Apr 16, 2013 2:07 pm
by whoami
I hope you are having a better day ISM. All the stress from dealing with paperwork, Dr's and employers is added tension not needed.

I am in a different country and our process for disability pension is not as detailed as the U K, with all the different levels you have. It still is the end result that matters though. I have been on disability for 23 years. I had an accident at work that triggered fibromyalgia. Because of the injury and fibro it made it hard to determine under which I should be labelled for disability. I had a Workers compensation claim as well as a Federal government claim for disability. Because of confusion, (not denying the illness) it took 10 years to sort it out. I was given 100% disability from both with backpay. I have no hard feelings with either agency, this was very unusual. It normally is all sorted out within a year at the latest. Quite reasonable process for applying.

I also was told I had carpul tunnel and with nerve conduction testing they proved it true. I had repairs done and it relieved some of the troubles in my wrists and arms but not the symptoms of fibro. If it is suggested it might be worth having it tested, just to get a bit of relief.

I also don't think it is worth getting yourself worked up over what others think. You know how you feel. I sometimes think some Dr's must get as frustrated as we do about understanding fibro. Try not to take it all personally, I know it is hard when it affects decisions made about your ability to work. Even though I know of people who have had fibro for many years and were able to control their symptoms well enough to return to some type of work, doesn't mean that they don't have it. Only that they have found ways of making it more tollerable for them. They still take meds, hurt etc but are more comfortable than they were. My good friend who was diagnosed 28 years ago, was in a wheelchair and hospitalized quite often for weeks with pain. She dropped in weight to 86lbs. Over the years with gentle excercises, the right meds for her and a new attitude she now works 15 hours a week. This is not common however. There is no cure, just control. So when Dr's have suggested that some may be able to return to work they are telling the truth. The thing is most of us can't and until a cure is found likely won't.

I really feel for you and others who are going through this stressful time of dealing with everything to get disability. I know it is hard to believe but once it is dealt with, decisions made one way or another, you will feel a bit better just knowing it is done with.

Peace to your heart!

Re: Getting better from FM ?

PostPosted: Thu Apr 18, 2013 11:59 am
by Iceskatemum
Thanks Whoami , good to read others perspective and experience, especially from another country .

I totally appreciate that with management some fibro sufferers can still enjoy full employment or work part time and with 20 /20 hindsight I probably have been doing that for years but it did eventually affect my work life balance .

I could manage the kids/work but not the house and very few spontaneous events. then over the years that in itself got smaller unti just before I came off work I could only manage work .

I would come home from work every night totally exhausted and just collapse into bed to get ready for another day. Weekends were just managing a few essentials like grocery shopping and taxiing children and then again the collapse on Sunday to get ready for Monday morning.

Having now been off work a year I am slowly seeing that I occasionally have maybe part of a day where I feel normal still in pain but not so fatigued but that is with engaging in all the things others on the site have discussed mainly pacing /supplements etc.

I believe the ill health retirement is teh way forward for me so that I can continue with this slow progress but with the added security a pension might give , hardly luxury but enough to pay off the morgage & put the dinner on the table .

I doubt I will get to a stage where I could be useful in the employment field at the level I had been but I would like to feel part of the human race again , interact with my children as they enter new stages in thier lives and more importantly engage again with my OH who is finding the loss of the "person" he has been with for the last 30 + years extremely hard .

My being worked up was my anger and frustration of the situation I found myself in, I am now more relaxed about it and am working to find ways to support my claim through discussion with my GP and specialist . Hopefully they will be able to give an impartial informed third party indication of my long term prognosis. Of course I am hoping it will support my claim for IHR but will have to wait and see.

I totally agree with you about finding peace once decisions are made , when I thought my IHR was just a formality as my HR had recommended it as a way forward my OH and friends and family said they could almost see my shoulder perk up .

Soft hugs and many thanks for your input.

Re: Getting better from FM ?

PostPosted: Thu Apr 18, 2013 7:31 pm
by whoami
I can hear by the words you write that you are feeling better. Better not with your symptoms of fibro but within yourself. I

It took a long time to realize that attitude about this illness can play a big part on how you feel on a day to day basis. I went through the denial, Ithe guilt of being off work but looking well on days others see me out to thinking I had to justify myself to everyone.

My Dr told me....don't take on other people's inventory, it is none of my business. In other words what others think is their issue not mine.

That made a huge difference in my life. I do what I want, when I want and I maybe do things differently or slower, I do them. I no longer feel guilty working in my garden for half an hour then getting in the tub and go to bed for the afternoon. I got to play in my way.

You sound like you are on the right track to finding a level of comfort with this. The right drugs, light excercise and mainly attitude has made my life worth living again. Not the life I had but a new "almost" perfect one.

Re: Getting better from FM ?

PostPosted: Fri Apr 19, 2013 2:40 am
by Iceskatemum
Thanks Whoami I am feeling calmer . Went to see the spepcialist to day , an expensive chat as I had to go privately but hopefully worth it. He took an interest in my syptoms and how I was day to day , its strange but with teh anxiety and stress my speech had gone all funny couldn't remember words , a bit slurred etc.......if it was anyone else I'm sure they would have thought me drunk!

Any way he feels from literature that 60% of Fm sufferers can have a better quality of life than when they were at thier worst and this is usually through careful management of the condition , some at this stage can get back to & continue work but some can't .

In my case he feels I am at present quite badly affected which will in turn have an impact on how I respond over the few years years . Given the fluctuating nature of the illness he can't say I will be totally unfit for the time period that work are looking at ....10 years but doesn't think I would be able to work at the level and capacity that I had in the past.

He is writting to my GP with his comments just so that they can be put on record and also sending me a copy of the letter should I wish to send a copy to the OHS as support of my claim ( if of course it helps lol)

So yes I am in a better place , I know have done all I can to support my claim for IHR it is now for others to decide.

Will let you know the final decison when it arrives.


Re: Getting better from FM ?

PostPosted: Fri Apr 19, 2013 3:03 pm
by fibro-lu

Re: Getting better from FM ?

PostPosted: Fri Apr 19, 2013 6:03 pm
by Iceskatemum
Thanks Fibro -lu at least now I can feel I've tried .

Was so nervous chatting to the consultant as was scared he might feel I was trying to get him to say something he couldn't stand over but its no different for him than us . No one knows what each day will bring even if like some of us the pains / aches and other symptoms are with us all & everyday , we do keep hoping they will magically disappear when we wake some morning

Re: Getting better from FM ?

PostPosted: Fri Apr 19, 2013 11:33 pm
by tonydin
welll ice i nearly looked at packing up work 8 years agooo but keeoed going ,, i do more now than i could ever do then both at work and at home

but i have more pain now than ever it dont stop me working though sp the ability to work can be improved with out the pain getting better which i belive it never will . as for the fog well my boss puts it down to my age i think ,, i would not belive it if i explianed

just had to cut dowm 38 50 foot conifers that bt were in a stew about now iv got cut up and stack and burn branges hours of work in my spare time?? you can give us a hand if you like only 60 more to fellyhr more you do the better you are but i think pysical work correctly paced is better than streess full mind work for you i know i do both

i sypathise how u feel cause i was nearly there but even though i feel worse for it i am able to do more at 60 thsn i could at 50

Re: Getting better from FM ?

PostPosted: Sat Apr 20, 2013 3:45 am
by Iceskatemum
Well done Tony for keeping going. I do admire folk who can do that .

As well as the physical out & about side of my job which I presently am not fit enough for , it the mental strength I find I also lack. You know what I mean, the ability to think 4 steps ahead of the conversation so that you always can anticipate the questions & the answers. I've "lost" the technical jargon/language I would need as well for writing reports and presentations.

If I was to stand up infront of a group now , I think they would need a translator as even my speech/language goes awol when I get stressed or anxious.

I do hope it improves but as of now it makes me sound as if I've had a few to many or away with the faries.....mind you either might be preferable to living with FM sometimes :lol: :lol: