Recently diagosed with FM and as an academic I am interested in contributing research to help us all who suffer the symptoms. Please have a look at sites.google.com/site/fibro... and let me know what you think. I am open to suggestions/expressions of interest.
Thanks
Andrew
Written by
DrAJM
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I think we all appreciate that exercise is invaluable in helping the pain of fibromyalgia. The difficulty arises when pain and exhaustion become a barrier to exercise. You then have a vicious circle of pain - immobility - stiffness - more pain.
Personally, I cope with this by taking mega doses of pain killers and getting out there for some (semi-conscious!) exercise. This is probably not the safest thing to do, but it works for me, and is better than sitting there waiting for the magic cure.
I do have days when no matter how much I try I can't get going, so then I hibernate for a day or two, before getting back on the road!
I think that fibromyalgia has many causes, and until they are identified, a cure is not likely. Management is what it's all about until that happy day, and obviously maintaining function has to be part of that management.
I'm sorry that you have been diagnosed with this irritating and destructive illness, yet glad to see that even the medical profession can suffer it!
I wish you the very best success with your research.
Dear Moffy, thankyou for taking time to reply. I agree it is about management of symptoms and I hope that as a FM sufferer I have a better appreciation of what is realistic to ask of people. If the exercise becomes barrrier then it is not the correct exercise. Some exercise protocols are competely unrealistic and my personal reaction to some literature has been I could certainly not do that (or indeed be willing to do so). I wish to listen to peoples experience and feedback before a final protocol is decided on.
I am living proof that FM can be controlled greatly by a combination of wellness therapies and excercise. I managed to get FM after a RTA in 2007. It took a year to develop fully. In 2010 I found myself having 10 months of A1 health after forking out some £4,000 in treatment including 2 sessions per week with a personal trainer, sun lamps, spas and diet change. In early 2011 I was instructed to STOP my wellness plan by my barrister in preparation for the RTA going to court. Within 8 weeks I had contracted shingles which blew appart my neurological system and I now have the worst pain Ive ever had over 80% of my body 24/7. Its my neurosignalling gone wrong and the shingles pain is with me all the time despite the shingles having gone. I believe I can be back where I was, but listening to the healthcare specialist who advised my barrister has taken another chunk of life away. I am in bed most days now and today my fingers work, so I can type on this forum. I know that excersize got me drug free and gave me my life back along with some other fundamental changes- so good luck to anyone who manages to join the trial- I rekkon it will work for alot as long as you are well enough to participate somehow- Thank you for sharing NN
I cannot exercise at all hence my GP does not suggest it for me. I get enough just looking after my daughter and that wears me out. But it would be interesting to keep up with this study xxxxx
HI Andrew, your research sounds interesting -- however I believe that "pacing!" is the most important aspect of "living" with FM. It is about each "individual" learning to achieve the "happy balance" of rest and exercise on a day-to-day basis and learning to accept your own limitations.Hence what works for one person may not work for another. So the exercise you may suggest may benefit some people but not others. I am now managing my symptoms well and keeping it under control by working part-time, swimming twice a week, yoga once a week, walking the dog for about 20mins twice a day. I think that it seems to be "low impact" and relaxing forms of exercise that are beneficial (eg running a marathon or a "spinning" class" would definitely not be recommended!!) although I do manage an occasional game of badminton! Therefore you should maybe encourage people to adapt your research exercise protocols to suit themselves (eg. what helps a 20yr old may be unsuitable for a 60yr old!) I hope your research goes well - I would have volunteered myself but I have just got my "own" exercise plan sorted out and it appears to work well -- so am not keen to mess with it!! D
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