Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-20-2016, 11:44 PM #11
NurseKris NurseKris is offline
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In my opinion one of the most important things to remember is that it is your choice. One of the best/worst things about medicine is that it is always changing. Personally I like to research as much as I can and read articles from both sides because I feel that makes me better informed. I also a big fan of pros and cons lists. Which ever direction you go don't forget that you know your body better than anyone else and don't let anyone talk you into a treatment/procedure/medication if you are uncomfortable. Good luck and keep us posted on what you decide and any results.
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Old 01-21-2016, 02:39 PM #12
lovefamilypets lovefamilypets is offline
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Quote:
Originally Posted by Jo*mar View Post
You probably have already dropped the over processed & junk foods..and read labels of what you do buy..

If not, that would be a first step to really clean eating, and being very aware of what you buy.
More fresh foods , less pre-packaged, less fried foods, more baked, boiled, broiled, steamed or slow cooked.
Good fats vs bad fats..
http://www.whfoods.com/foodstoc.php

Of course it's hard to do 100% of the time.
Thanks Jo*mar for the link and suggestion Unfortunately, I've already tried that. My mom cooks for me since I can't due to the pain in both feet and both hands and luckily she cooks from scratch and very healthy. If that wasn't enough she helped me do an elimination diet that consisted of only fresh fruit, fresh vegetables, organic meat, olive oil, coconut oil and organic balsamic vinegar for 90 days. That's it, no take out, no processed foods, sugars, packaged or canned foods etc. And it didn't seem to help.
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Old 03-14-2019, 02:36 AM #13
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Originally Posted by cdwall View Post
I don't have a lot of energy to type and think right now and my *dog* just stepped on my keyboard and erased what I was writing.

So here's another try - short and sweet. No, Wahls' diet did not cause my gastroparesis. I also have POTS and either that or the RSD can cause it.

I research a lot. I'm a PhD biochemist with lots of time to look up everything I can manage wrt my many health problems. I keep an eye out for all things diet. There is some theory and evidence to support the use of ketogenic diets in neurological disease. It has long been used to successfully help treat epilepsy in humans. It's now being tried for other neurological conditions. Terry Wahls is an internal medicine doctor so she's not into hocus pocus. No, we really don't know the consequence of long term ketosis. But if your disease is bad enough, it may be worth trying under the care of a doctor. I agree more studies are needed. I was fine doing it with what I knew and what made sense to me.

For me, just cutting out sugar helps a lot but I consider it temporary in terms of "healing" my disease. More like to control symptoms. However, there are a lot of people on the MS boards who report the Wahl's diet has arrested and reversed their MS. I don't doubt that. But there are also a lot of fanatics and blind followers on those forums and boards. Some of them doing the ketosis diet even though they don't have any real health problems. In that respect it may be considered by some to be a fad, and a dangerous one for those with no good reason to be on it. So study up and try to separate facts from fiction. If I can, I'll try to find recent studies on prolonged fasting (which creates a metabolic ketoacidosis and weight loss) and eating a low carb/high fat diet (which creates a nutritional ketosis and no weight loss). These two different types of ketosis may have very different consequences. Right off the top of my head, the fasting diet is thought to cause the body to clean up a bunch of trash (cells doing unnecessary things like the neurological over reactivity associated with RDS) that takes up too much energy for the now starving body forced to burn ketones to survive. Nutritional ketosis can help by providing fuel to messed up parts of the brain where ketones can still be absorbed whereas glucose cannot.

I hope this helps. If I feel better, I'll try to help you more later if you'd like.

Denise
I know you wrote this back in 2015 but I wonder if you have seen any of the research done since then about fasting and autophogy? My ex-wife has full body RSD and I’m always looking for a cure. Something other than the 50k comas I have paid for in Mexico. I believe a prolonged fast could have some real benefits. Any thoughts?
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Old 03-14-2019, 05:33 PM #14
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Wow. I rarely check this forum these days but happen to today. I have to say I haven't kept up with this area of fasting very well. I developed gastroparesis so severe that I've pretty much been on liquids for the last three years. However, what I do remember is that some people seemed to be transitioning from trying longer fasts to intermediate fasts of a day or so, and a milder version, promoted by Dr Wahls where you don't eat for 12 to 20 some hours of the day. IOW, you fast from supper until say the next supper. Or for the milder version of that, a12 hour fast where you eat supper and then nothing until lunch the next day. you do this every day. I think there's some good thinking behind this and there are still a bunch of people on the fasting bandwagon. I really want to do this, but my stomach doesn't empty properly so even if I don't eat for a day, some food could still be in there negating the fasting part. I'm also pretty limited in what I can have so I don't have the luxury of a high fat low carb diet right now.

Interestingly, though, I've tried this successfully with my dogs. One dog has some itching/allergy problems. I tried not feeding him for a day or so and it actually did help the itching go away. More than once. It was actually pretty striking. Dogs are built not to need to eat everyday so it's not the same as us, but it does kind of support the low fuel clean up of autoimmune cells we don't need theory.

I left that Walh's MS group but I hear bits and pieces enough to know the fasting thing is still going strong. I'd love to hear if anybody else has tried this.
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