I have been suffering with Reflex Sympathetic Dystrophy for the last 6 years after a car accident (for those that do not know it is a syndrome that attacks the nervous system and leaves you in constant pain all the time). Now 2 months again my Doctors diagnosed me with Neuropathy in my feet. The pain I experience now is unbelievable. How do you cope? How do you get around? I use a cane but it is still so hard to walk? I am cuurently taken about 100mg of oxycontin per day along with 500mg of Zonnegran per day and 30mg of Lexapro per day.

I find myself spending too much of my time in bed and do not want to end up that way for good. Any suggestions on what I can do to keep going? I'm all ears!!!! Thank you for all of your help!!!!!!

Mark

Mark,

I am so sorry that you are dealing with so much pain. I do not have RSD but do have a nasty PN that is lately causing me to have an increase in pain so I can relate to you on that level.

You did not say who is prescribing your meds. If you are not going to a Pain Clinic to see a doc that specializes in pain, you may want to check that out. Not that a neuro or GP can't work with you, it's just that a pain clinic only deals with your pain and may look at things with a different perspective.

Also, when my burning sensation gets out of control, I ice my feet but very carefully. I wrap my ice bag with a kitchen towel so the level of cold is more controlled and doesn't freeze my hot, sensitive tootsies.

I now have a laptop on a wireless connection in my bedroom so I can lie down and use it instead of the PC in the den. That's where I can also watch T.V. and read.
To say that I have had to make major life changes is underestimating things. When I feel "good", I try to get out and see a movie, do some shopping (in stores with scooters) or visit friends.

Well, that's my story and I hope it has helped you just a little bit. PM me anytime you have a question about PN or if you just need to talk.

Best of Luck, Mark!
Nancy-H

Nancy

Thank you so much for your insight and kind words. Every bit of help is good. I go to a Physiatrist. She is excellent in helping me with my pain but because there are so few of them in Massachusetts it is hard to see her as frequent as I would like. The local pain clinic unfortunately leaves alot to be desired. plus I can no longer drive so I am at the mercy of others. But I continue to take it one day at a time! Thank you again!

Mark

Is there an RSD board here? Most people with pn have pain, but not at the level you are describing. I hope you are going to a pain clinic, and being evaluated for everything there is to offer.

You might want to read the stickies here about supplements, and about the path to wellness, posted by Wings.

Neurontin, the antidepressants, Klonopin, all have given some people help.

Mark,

I have RSD and TOS and have the burning/painful feet as well.. One thing I have found useful is a pain cream called Sombra I bought to use for my arms. I massage it into the soles of my feet and it feels slightly warm as it goes on, then turns pleasantly cool. It takes the pain down a level and lasts for quite a while.

I bought mine from a PT, but it is probably available from med supply stores as well. You can also find it on-line. I believe it runs around $12-14 or so for 8 oz, but that will last you a VERY long time, it is very dense and you need just a very small amount each time. It says it is for muscular and arthritic pain, but I and others have found it helpful for at least reducing the nerve pain a notch. Active ingredients are menthol and camphor, it also includes aloe vera, capsaicin, grapefruit seed, orange peel, yucca and green tea extracts, rose water and witch hazel.

Manufactured by Sombra Inc in USA wwwsombrausa.com

hope this helps!

beth

There is an RSD board here, the link is:
http://forums.braintalk2.org/forumdi...sprune=-1&f=21

Billye