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 09-07-2012, 09:28 AM #1
Manomatter Manomatter is offline
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Default RSD? Avoid SUGAR!!! (and coffee and alcohol!)

I have recently been seeing a new doctor who advised me to NOT have sugar. to eat as if I am a diabetic. This occurred after I realized that even two or three sugar cubes eaten alone were causing problems and after a liter of orange juice almost killed me.

If you doubt me, drink a liter of orange juice (alone - with nothing else) for lunch. I don't know if it is a good idea to recommend this. I am not a doctor. See your doctor for advice (but he won't know ****). And you will be in pain for 3-4 days. And it may be worse after that. But if you do it and you have pain you will know quickly if you should drive sugars (natural and man made) to close to zero in your diet. And you will have learned something critical about your body.

I finally know why I got worse this year while I was eating a sugar laden protein bar up to twice per day!

Thoughts?

P.S: The same goes for alcohol, coffee (caf and decaf), and many artificial sweeteners (I don't know about Steevia!).

Last edited by Chemar; 09-07-2012 at 09:39 AM. Reason: NT language guidelines
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Old 09-07-2012, 12:13 PM #2
Jimking Jimking is offline
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Originally Posted by Manomatter View Post
I have recently been seeing a new doctor who advised me to NOT have sugar. to eat as if I am a diabetic. This occurred after I realized that even two or three sugar cubes eaten alone were causing problems and after a liter of orange juice almost killed me.

If you doubt me, drink a liter of orange juice (alone - with nothing else) for lunch. I don't know if it is a good idea to recommend this. I am not a doctor. See your doctor for advice (but he won't know ****). And you will be in pain for 3-4 days. And it may be worse after that. But if you do it and you have pain you will know quickly if you should drive sugars (natural and man made) to close to zero in your diet. And you will have learned something critical about your body.

I finally know why I got worse this year while I was eating a sugar laden protein bar up to twice per day!

Thoughts?

P.S: The same goes for alcohol, coffee (caf and decaf), and many artificial sweeteners (I don't know about Steevia!).
Many of what you listed and then some. Pork is something my wife can no longer tolerate because of her RSD.
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Old 09-07-2012, 08:23 PM #3
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Hooshmand wrote about the 4 F's diet for RSD several years ago.

http://www.rsdrx.com/four_f%27s_diet.htm

He suggests diet soda is okay, but it's been found to spike blood sugar even worse than the sugar variety.

Regarding pork, I find that the nitrate laden version found in most grocery stores is the problem. By switching to less processed versions, I don't seem to have the same issues. Are bodies are dysfunctional and hypersensitive. Eating organic, whole foods, with limited simple carbs has been beneficial to my energy level and cleared up my stomach pain and random vomiting issues. I've found Marksdailyapple.com to be helpful in learning about quality nutrients.

And sorry for repeating myself yet again...
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Old 09-11-2012, 11:45 AM #4
painman2009 painman2009 is offline
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sooo hard to follow this. especially when I have a dr telling me to drink coffee with my meds.. and pork is a staple. to make sure i dont have red meats in the house..it also says stay away from cheese and dairy.. no cakes cookies or candy..ohh my.. I live for this stuff... sooo hard .. i have cut back a lot but cant seem to quit.. especially yummy ice cream and mozzarella..
I eat alot of fresh veggies.. not cooking them as it kills more than half of the vitamins , and loads of fresh fruit. but why cut out sugar when the fresh fruit contains higher amount of sugar than cane sugar.. go figure right.. the body need what the body needs..
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Old 09-11-2012, 02:18 PM #5
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Originally Posted by painman2009 View Post
sooo hard to follow this. especially when I have a dr telling me to drink coffee with my meds.. and pork is a staple. to make sure i dont have red meats in the house..it also says stay away from cheese and dairy.. no cakes cookies or candy..ohh my.. I live for this stuff... sooo hard .. i have cut back a lot but cant seem to quit.. especially yummy ice cream and mozzarella..
I eat alot of fresh veggies.. not cooking them as it kills more than half of the vitamins , and loads of fresh fruit. but why cut out sugar when the fresh fruit contains higher amount of sugar than cane sugar.. go figure right.. the body need what the body needs..
Why a doc would be encouraging you drink coffee when you take meds... ??? Caffeine is a bad thing in general for RSD, and additional acid with the stomach issues many of us experience...and exacerbated by our med needs. He maybe wanted to encourage you to take them in the morning and knows little to nothing about nutrition in general, let alone nutrition and RSD. I dunno???

Hooshmand's diet by itself is difficult to understand or follow. And it has some outdated info and is generally lacking on what to eat and why. That's why I suggest Marksdailyapple.com and/or a book like the Schwarzbein Principle.

Hooshmand claims diet sodas are fine, which again, is just bad advice. So, the 4 F's is not perfect.

Your body metabolizes a piece of fruit very differently than white table sugar or corn syrup. Having high quality (preferrably organic) seasonal, local fruit in moderate amounts is a good thing. Eating it with (or after) some high quality fat and protein is even better.

The traditional American food pyramid=carbs, fruits and vegetables, dairy and protein, fat. The Paleo food pyramid="healthy" fats (olive oil, nut oils, coconut oil, chicken fat, tallow, or lard, etc.), protein, veggies, fruit, dairy, complex carbs.

Those that suggest eating several small meals a day, to so to avoid their blood sugar crashing. With Paleo, you avoid eating things that will start the cycle in the first place. Protein and satiety= http://www.marksdailyapple.com/prote...#axzz26BqGvPzk

So much of what we're told is healthy for us is garbage for our bodies. In fact, the reality is 90% (or more) of what is available in the grocery store you shouldn't eat and don't need. It means buying quality whole foods and cooking at home.

Pork is fine. Just don't eat the stuff full of nitrates and preservatives. I've found sausage at Costco that is good quality. Health food stores or Farmers markets that offer quality meats are a good option. And RED MEAT is fine too, btw. Salmon is heavily consumed for health reasons, but a large percentage available in the US is now farm raised, and has lost many of the health benefits of wild caught.

A scoop of full fat ice cream as a treat is fine. Or, slice some strawberries and drizzle with full cream. Try Fage Greek yogurt (not the 0% fat). And if you can tolerate cheese well, it's fine. I'm happy with a chunk of Brie and an apple as a meal. Or, Buffalo mozzarella, tomatoes, avocado, olive oil, Balsamic vinegar.

Regarding "what the body wants", our bodies want to store fat for survival. But, you can certainly learn how your body reacts to more subtle messages. If I ingest something with more than (roughly) 20 to 25g carbs (especially without fat and protein) I feel a quick high and then a resulting crash. If I eat a steak dinner first (for example) my body doesn't suffer as much if I then have dessert. You seriously stop craving a lot of stuff if you can stick with it a few weeks.

We normally consume a heck of a lot of chemicals and sugar, there can certainly be withdrawals from some of that stuff. If you can't cold turkey things like coffee, then start lowering like they're meds...

With RSD, there are nutrients our bodies desperately need. There are also, lots of additives, chemicals, and hormones (etc.) that cause additional stress our bodies can't tolerate.
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Old 09-11-2012, 07:30 PM #6
painman2009 painman2009 is offline
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Originally Posted by LIT LOVE View Post
Why a doc would be encouraging you drink coffee when you take meds... ??? Caffeine is a bad thing in general for RSD, and additional acid with the stomach issues many of us experience...and exacerbated by our med needs. He maybe wanted to encourage you to take them in the morning and knows little to nothing about nutrition in general, let alone nutrition and RSD. I dunno???

Hooshmand's diet by itself is difficult to understand or follow. And it has some outdated info and is generally lacking on what to eat and why. That's why I suggest Marksdailyapple.com and/or a book like the Schwarzbein Principle.

Hooshmand claims diet sodas are fine, which again, is just bad advice. So, the 4 F's is not perfect.

Your body metabolizes a piece of fruit very differently than white table sugar or corn syrup. Having high quality (preferrably organic) seasonal, local fruit in moderate amounts is a good thing. Eating it with (or after) some high quality fat and protein is even better.

The traditional American food pyramid=carbs, fruits and vegetables, dairy and protein, fat. The Paleo food pyramid="healthy" fats (olive oil, nut oils, coconut oil, chicken fat, tallow, or lard, etc.), protein, veggies, fruit, dairy, complex carbs.

Those that suggest eating several small meals a day, to so to avoid their blood sugar crashing. With Paleo, you avoid eating things that will start the cycle in the first place. Protein and satiety= http://www.marksdailyapple.com/prote...#axzz26BqGvPzk

So much of what we're told is healthy for us is garbage for our bodies. In fact, the reality is 90% (or more) of what is available in the grocery store you shouldn't eat and don't need. It means buying quality whole foods and cooking at home.

Pork is fine. Just don't eat the stuff full of nitrates and preservatives. I've found sausage at Costco that is good quality. Health food stores or Farmers markets that offer quality meats are a good option. And RED MEAT is fine too, btw. Salmon is heavily consumed for health reasons, but a large percentage available in the US is now farm raised, and has lost many of the health benefits of wild caught.

A scoop of full fat ice cream as a treat is fine. Or, slice some strawberries and drizzle with full cream. Try Fage Greek yogurt (not the 0% fat). And if you can tolerate cheese well, it's fine. I'm happy with a chunk of Brie and an apple as a meal. Or, Buffalo mozzarella, tomatoes, avocado, olive oil, Balsamic vinegar.

Regarding "what the body wants", our bodies want to store fat for survival. But, you can certainly learn how your body reacts to more subtle messages. If I ingest something with more than (roughly) 20 to 25g carbs (especially without fat and protein) I feel a quick high and then a resulting crash. If I eat a steak dinner first (for example) my body doesn't suffer as much if I then have dessert. You seriously stop craving a lot of stuff if you can stick with it a few weeks.

We normally consume a heck of a lot of chemicals and sugar, there can certainly be withdrawals from some of that stuff. If you can't cold turkey things like coffee, then start lowering like they're meds...

With RSD, there are nutrients our bodies desperately need. There are also, lots of additives, chemicals, and hormones (etc.) that cause additional stress our bodies can't tolerate.
I can honestly say wow...... you are a well of knowledge when it comes to foods and nutrition. My aunt and one of my best friends are like that.. in fact my aunt is a nutritionist.. I try very hard to avoid subjests such as nutrition with her.. she says one thing and does another.. thats ok though most of us are hypocrites in our own rights... she has good intentions. its listening to family lecture that gets you. but reading yours I was drawn in. sadly I know what you are saying but a life of eating one way (and enjoying it with out consequence) is very hard to change. that is basically what I was trying to portrait. as far as my coffee.. oh my I am an addict ..but I know i can stop it with minimal withdrawal . but for some reason my doctors are telling me that the caffein in coffee (organic when on sale) will help the drugs enter my system, and that the caffein is not as bad as most people think. I doesnt sound right but with 3 out of five doctors telling me the same thing and the constant change in research I go with the flow.. I appreciate your input and hold onto it, infact it was one of your messages to me that got me changing my diet a little more to the extremes. plus it gave me a foot hold into more research.
thank you
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Old 09-11-2012, 08:37 PM #7
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I saw Hooshmand's 4 F's diet years ago and thought there was no way I could do it. It wasn't until I did some reading (and it only took a few hours on Marksdailyapple) that I figured out what was workable for me.

Yes, I miss pizza at times and will have it every couple of months, but I treat like an appetizer instead of a meal now. A piece is enough to enjoy and I'll eat protein and veggies along with.

When I first started I did a cheat day once a week.

I used to have what felt like the flu 5-10 days per month. It was totally unpredictable. My RSD is miserable enough without going through that.

And I certainly indulge in things that don't have nutritional value in them on occasion, still. But I know how to balance things better.

So much of what we're told (sold...) is a money making gimmick for some Fortune 500. Quality food is more expensive, but when you stop spending money on junk it evens out. When you stop buying processed food, you can afford wild caught salmon, and that amazing strip of organic grass fed beef...
I eat amazing, rich, quality food, and it's not "diet" food. It's just a different way of eating.

Eat butter, not margarine. Don't use vegetable or corn oil. Don't eat non or lowfat dairy, it's got more carbs and is harder for your body to process. Don't drink juice, eat fruit. If you have to have cookies, bake them from scratch, or buy with ones made from a handful of quality ingredients. Etc. Etc. Etc.

End diatribe!
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Old 09-11-2012, 10:58 PM #8
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It's only coffee and cigarettes that get me through the day. The specialist that came to my house to examine me said that under no circumstances should I try to cut down as the stress would make things even worse than they were then.
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Old 09-12-2012, 01:22 PM #9
painman2009 painman2009 is offline
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It's only coffee and cigarettes that get me through the day. The specialist that came to my house to examine me said that under no circumstances should I try to cut down as the stress would make things even worse than they were then.
What I find humorous about all of this is you see one Doctor that says do another dont . One article that say one thing and right after that another one contradicts it.
I say remember this.. doctors are in practice of medicine.. practice is the key word here making every one a guinea pig. hows that for scary right...
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Last edited by painman2009; 09-12-2012 at 01:23 PM. Reason: spelling
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Old 09-13-2012, 02:09 AM #10
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Yeah I know the Police Medical Appeals Board refused early release of my Police Pension due to Permant Disability saying I had not followed NICE Guidelines and had the standard treatments.
No guidelines for the treatment of RSD/CRPS have ever been published in the UK and I have been willing to go further than any other UK Patient to be cured, agreed to have 5 day ketamine coma, one hospital refused to amputate while I'm awake, a second is now condsidering it There are no standard treatments every one is an experiment
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