Hi, To all out there that are living with Fibro and Cfs. syn. in the midst of dealing with this syn. has not only altered my life but has affected other people in my life as well. It is hard dealing with this and then we add on parastheisa/muscle spasms which you feel like crawling into a big hole that you can not get out of. Anybody else that wishes to comment or share. I would be most GRATEFUL. We all can have an all out Party discussing what our symptoms are and how we handle them. The main thing I have found out about this syn. is who the Real people in my life are. Who are there for me and who are not. It sometimes, is sad to see what really is! And is surprising to see what really isn't. I know now that the greatest expectation of me is my time.
Yes, living with fibromyalgia and chronic fatigue is very, very hard. I have come to the conclusion that others truly cannot understand what we are experiencing, they just cannot. And I've grown to not expect them to understand. That took me a long time. It's as if I'm speaking Chinese. So, I instead spend my energy trying to figure out how to teach myself to calm down my pain. This has taken a long time and I'm not there yet, but I'm on my way.
I find that learning to meditate is helpful. There are other techniques but I'm too tired right now to type them, seriously!
Take care.
Anonymous, excellent response. Why worry about whether others "get it" or not. As long as you are taking care of you, that is all that matters. What others think, is the least of your problems. It is important to have one support person you can talk to at any time. For me, it's my husband. He is the ONLY one who really knows what I go through on a daily basis.
I have had RSD for the past 10 1/2 years and have learned that my energy is best spent on trying to stay positive mentally and doing (or not doing) whatever necessary to try and keep my pain under control.
I agree with Anonymous on another point: meditation, or for me, prayer, seems to help as well. Stay away from negativity. Oh, and laugh often
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