Quote:
Originally Posted by MominPainRSD
Hi all!! This forum has been such a wealth of information and support for me already along my relatively brief road with RSD. I respect your wisdom and experience in so many ways and thought it would be interesting to hear from everyone as to what you each find to be invaluable in your day to day life as you deal with your RSD.
I know many of you have mentioned Epsom salts, heating pads, down pillows in car rides, etc.....but are there specific brands or types of things or fabric contents that you find most soothing or beneficial to you??? I would like to start acquiring an RSD "survival pack" of items (preferably finding things on sale a little bit along) that might help and come in useful when the need arises (or better yet......BEFORE the need arises!).
I thought it could be useful to read each others experiences and what works for them, and perhaps we could ALL pick up a few tips we hadn't thought of before.
Thank you all in advance for responding!!  |
Hello Mom in Pain,
I'm a mom - age 58. After more than 30 years with CRPS, IvIg was my life saver. I'm pain free and drug free now! No more involuntary muscle twitching and cramping either! I receive 20 grams of Privogen every 21 days - sometimes at 18 to 20 days, depending upon how I am feeling or what is coming up in my life.
Iv glutathione helps too.
Before IvIg, Lidocaine patches were a great help. They are soft and kill nerve pain. I used to cut them up for smaller areas...wrap them around fingers, etc.
Sleeping on earthing sheets helped me too. See
www.earthing.net. At first try, the sheets hurt. I tried again and found that after about 15 mins, they were helping make the pain decrease.
Gyrotonic and gyrokineses movement therapy helped enormously. The type of movement helped take pain away. It is used in hospitals in Germany and Japan.
I found that movement of the right sort made a huge difference. Since my feet were too painful for much standing or walking, I had to find ways to move that did not involve being on them. Lifesavers were riding horses, gyrotonic, and a stationary bike with a comfortable (well, we know that is a relative term for CRPSers) seat.
I still wear the soft, bamboo clothing I began wearing all the time when I was in pain. It doesn't wrinkle, dresses up or down, and it is as comfortable as the best pajamas. So, I sleep in them too. See
www.yaladesigns.com.
I tried to NOT travel by air, because I hurt much more for months afterwards. Since recovering, I've not yet stressed my body with air travel. When I used to fly, I always went in a scooter and wore dark glasses to reduce the neural stimulation by lights and movement in the airport.
Wishing you success in healing!!!
ambika