Hello everyone, the RSD has continued to spread and it is full body now. The doctor I am working with has suggested I do a 4 day fast or go on a high fat diet to put my brain and body in a ketosis state. Has anyone heard of this or tried this?

It sounds crazy to me but he said the fasting could allow my body to heal since it won't have to put energy into digesting food and will put my body in a ketosis state which is suppose to be good for the brain.

I'm skeptical, I'm extremely thin as my body doesn't seem able to absorb nutrients very well or eliminate food properly. This is counter-intuitive to me so any feedback would be appreciated! Thanks!

I have not heard of this for CRPS but there's been reference to it on the peripheral neuropathy board. You might try doing a search feature to see what comes back.

I've been on Terry Wahls' diet for MS. At the highest level you will be in at least mild ketosis. It's not a weight loss diet, although some lose weight. You can easily find it by googling. There are some risks to being in ketosis for too long. It's reasonable to say that someone should have a good enough reason to do it to overcome the risks.

There is some recent science behind what your dr says though.

As for me, I'm having some gastroparisis problems or something because I'm not digesting or absorbing well. I can't stay out of ketosis even though I'm no longer on the diet. You can buy urine strips to check for ketosis, btw.

A low carb diet like Wahls' helped my pain and swelling no doubt. But no healing and I was on it for a year and a half. As soon as I ate carbs, pain and swelling came right back.

One question: do you or your doctor think the Wahls' diet caused the gastoparisis?
And thank you for that response! It is good to know that there is at least one patient with RSD that has seen some benefit from a mild ketosis state. I've already tried an elimination diet for 3 months and that did nothing so I really didn't want to try something new unless there was some evidence behind it that it might help.

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

Thanks Denise! That was so helpful! When you explain it, it does make sense. I'm still not sure I want to be the first ginny pig for the fasting one since currently I weigh a little less than 100lbs and it scares me to think I could lose additional while it is already hard to keep it on. Although, my doctor said the fasting could also potentially help with the chronic constipation which is the main reason I have a hard time putting on weight.

I've eliminated sugar from my diet for the last 90 days (except for some fresh fruit like berries) and I did not have any decrease in pain unfortunately; although, I have talked to many people who said sugar did increase their pain and inflammation.

Anyways, thank you very much for all your help! I don't have a science background so trying to parse out truth from fiction can be very challenging for me so I really appreciate your advice!

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.

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?

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.

Trust yourself here...run from this. What sort of credentials does this person have? Starving is not good for the brain or any part of you......we are designed to digest....it is terrible stress for the body to be deprived of (nutricious) food.

PS...whenever I hear of dubious treatment I type it in with the word "quackwatch." It's a really good website as is sciencebasedmedicine.org. You can use key words "ketosis" and/or "high fat diet."

I hope you find good care!