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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


This post is not about what made me better, it is about how I found it. What caused my RSD may not be what is causing yours, but the research techniques I used to find the solution can help.

I got RSD in my left foot after a minor injury to my shin in Feb 2002. In May 02 I was diagnosed. I went to many docs and no one helped. I'm cured now and this is how I did it.

First, through research I discovered, and accepted, that RSD is a symptom of a condition and not a disease in itself. If I could discover the underlying condition and treat that, the RSD symptoms might clear up.

Because there are over 100 known causes for neuropathy, my doctors were unable and unwilling to help me determine the cause. I was on my own.

So every day I hit the web and researched and checked out everything everyone was saying about RSD and neuropathy.

I checked everything I found against what is documented about it at nih.gov. You won't believe that the US government has done so much research into every theory of neuropathy. It's phenomenal. You just have to know what you're looking for to get it show you the research.

Next, I tried everything that everyone said gave them relief. I figured that since I didn't know what was causing my problem, what was causing theirs might be causing mine, so their therapy might work for me.

Yes, I spent a lot of money on vitamins and such, but the option of staying in a wheelchair the rest of my life was a lot of incentive to keep trying. It finally paid off and I found the cause of my pain. I was able to treat the underlying condition and I have been pain free and walking again since last September.

You can do the same. Find the cause. Don't give up, and you might be able to cure yourself too. Doctors don't have the time and resources to do it for you. There aren't tests that can show what is causing most RSD. You just have to explore yourself and research, research, research and hang in there.

Hope it helps,
Brice

P. S. My cause? Gluten intolerance. Research now estimates that 1 out of 133 Americans are thought to be gluten intollerant. Most, of course, don't know it. It really is a primary cause for neuropathy, and I hope everyone with idiopathic neuropathy considers it.
I know what you mean. I was desperate too and trying everything. I think that's the only way to find out what is causing the problem. If we keep in mind neuropathy is a symptom and not a disease in itself it helps.

Gluten is a substance found in wheat, rye, and barley. That means eat no wheat, rye, or barley or anything contaminated with them such as oats. Remember, some who are allergic to gluten have no gastric symptoms, so you really have to analyze what you eat beforehand.

It's really not such a hard diet. It used to be because wheat gluten used to be a processing ingredient in many more foods than it is today. Many manufacturers have already exchanged it for a non-gluten ingredient, so don't trust all the web chatter about how tough this diet is.

If you're going to try a gluten-free diet to see if you feel better, start calling the toll-free number listed on the foods you like and ask the manufacturer if that food is gluten free. They know and are more than happy to talk about it and everything they have that's gluten free. I'm back to eating everything I used to eat. I've just had to swap brands for the most part.

For instance, spaghetti (the corn spaghetti beats rice); spaghetti sauce (all the Classico brands are gluten free); Quaker Rice cakes and Quakes are gluten free (that's cold cereal, quick sandwich bread, and snacks for me now); Just about everything Nestle is (but not Hershey); Just about everything Oscar Meyer is too. For breads, pizza and pastry I get gluten free flours from a specialty store. You can get pre-packaged and easy to make or bags of individual ingredients. It's actually easier than using wheat flour because you only let it rise once instead of twice. And donít buy bulk from bins because it gets contaminated from scoops and nearby flours.

Kraft claims they list even trace amounts of gluten on the label, so unless the label says wheat, rye, oats, or barley, it's gluten free. They won't put that in writing though, and if you talk to the right rep you can get a list of additional terms that describe hidden contamination of gluten. Here I pick up all my sauces (very important to me).

There is a home test kit available now for gluten from several companies.

I'm also lactose intolerant and despite what my doctors said about that not having any effect on neuropathy I discovered it does for me. I do have to avoid all trace of dairy also to be completely symptom free of neuropathy. I was craving chocolate and cheese before I started taking calcium supplements.

Watch for gluten in medications too. Call the manufacturers because they donít list hidden ingredients. Iíve been shocked at what they use!

They say try the diet for six months before declaring it not a factor in your neuropathy if you don't feel any improvement. I started a gluten free diet July 17, 2003 and started feeling better in September. The pain was reduced enough for me to walk again in October. I'd had neuropathy since about March 2001.

I hope this helps. Until they come up with tests that can show the cause of everyone's neuropathy I guess all we can to is try a process of elimination. Increasingly, this gluten intolerance without gastric symptoms is becoming more talked about. Good luck with it and let me know how you're doing.





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