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 07-17-2015, 12:20 AM #1
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Default Help again!

So ive had my 3rd surgery and my 3rd one with my rsd. It has spread and it has gotten worse, it affects my upper body. I want to know how many are affected by rsd in there stomach? Ive lost alot of weight, to much, and as much as i want to eat I just cant. Given that I did have surgery i am needing some protien to help heal.
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Old 07-17-2015, 06:53 AM #2
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Have you tried taking any protein shakes?
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Old 07-17-2015, 09:19 AM #3
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hi tos. i have rsd in my stomach too. i got it after my first surgery and then it got worse after the next two surgeries i had since i got rsd. i'm sorry you're rsd spread too. i can't eat meat anymore because it makes me nauseas and i get terrible stomach pains from the rsd that my pain meds help to alleviate. but i also get nauseas from taking so many pain meds to help alleviate the pain. its a vicious cycle. the only thing i can say is to let your pm dr know its spread if you haven't already and see if they can give you a stronger pain med and also try to eat something before you take your pain meds like yogurt or some sort of milk based product. it helps coat the stomach and also is a soucre of vitamin d which helps to give you protein. i eat alot of vegetarian foods and seafood now that are protein based as well and foods like peanut butter for protein. tums also comes in handy along with pain meds that my dr prescribes. sending soft hugs your way. p.s. protein bars like zone bars and kind bars are easy on the stomach (at least for me) too.
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Old 07-17-2015, 09:31 AM #4
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You can supplement your protein intake with gelatin. A good organic gelatin will benefit you not only because it has protein, but it can help heal your body. If you get the cold dissolvable kind you can mix it in drinks.

Also try a high protein Greek yogurt that has live bacteria. Read the labels, some brands have more than the others. i mix a nonfat with a full fat yogurt for the best taste.

You can mix regular non-dissolvable gelatin in yogurt. It makes the yogurt into a ricotta cheese consistency. I eat this with berries and nuts.

You can add Chia seeds too to your diet as they are high in protein. You need liquid with them. Some people make a Chia gel which they mix into yogurt, puddings. I put them in my juice.

I make a nut butter banana smoothie with melted coconut oil, yogurt, a frozen banana, tablespoons of almond, cashew or peanut butter and cows' milk or coconut milk.
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Old 07-17-2015, 01:29 PM #5
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Yeah my PT told me to try to atleast drink 1 protein drink a day because I can go several days easily without eating. Has any of your drs been able to confirm rsd affecting your stomach? I don't have a PM dr, exspecially since NONE around my area know anything about rsd.

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Old 07-17-2015, 01:43 PM #6
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Have you considered using a good quality whey protein? Most of them contain at least 20 grams of protein. I have just started using whey protein powder after reading that adequate levels of protein are necessary for bone health. (Have osteoporosis as well as RSD.) Unfortunately, the better products are expensive.

I hope you will find a good solution that works for you to get your needed protein.
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Old 07-17-2015, 02:00 PM #7
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Where do you get that? I have to go and buy everything this weekend and go ahead and give it a try. And how much protein due you put in? And that is without eating anything for the day.

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Have you considered using a good quality whey protein? Most of them contain at least 20 grams of protein. I have just started using whey protein powder after reading that adequate levels of protein are necessary for bone health. (Have osteoporosis as well as RSD.) Unfortunately, the better products are expensive.

I hope you will find a good solution that works for you to get your needed protein.
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Old 07-17-2015, 06:32 PM #8
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There are many, many whey protein powders on the market. They are available online at Amazon, I-herb, and other supplement vendors. They are also available at drugstores and grocery stores. Some are offered in 1 serving packets so you could see if you like the taste before buying a larger size.

I have tried two kinds: (1) BioChem (manufactured by Country Life) 100% Whey Protein, chocolate flavor. From grass fed cows, free of artificial hormones, no artificial sweeteners. It had 20 grams of protein. It did have organic evaporated cane juice sugar as an ingredient in it. (don't know if that is important to you or not). Mixed fairly easily and taste was okay.

(2) Jay Robb Whey Protein Vanilla. 25 grams of protein. Sweetened with stevia. This mixed fairly easily, but was a little too sweet for my taste.

When I was trying to decide what brands to try, I looked at number of protein grams, that product was either whey isolate or whey concentrate, came from grass fed cows, free from artificial hormones (rBGH), and that it didn't have a lot of sugar or "junk" ingredients in it.

You could try mixing the whey protein with milk, or yogurt and/or fruit for more nourishment. (I just mixed mine in a glass with a spoon and stirred briskly.) If just using cold water and whey powder, liquid will be thin.

Other whey protein brands that I thought looked like they might be good were: NOW Sports whey protein certified organic, Jarrow Whey Protein Powder Natural, Solgar Whey to go, and Whey Factors Natural French Vanilla. However, I have not tried these.

The two kinds I purchased were at two different grocery stores. So those brands may be easier to find at brick-and mortar stores. Hope this helps!
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Old 07-18-2015, 09:54 AM #9
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hi tos. my drs found out that the rsd was causing my stomach pain by ruling out all the other reasons i could have stomach pain. they did ultrasounds, catscans and mris and also took bloodwork. after they could find nothing else wrong they determined that it was rsd and my pm dr increased my pain meds to help manage my rsd spread to my stomach and increased pain from surgery. heating pads also help alleviate the pain a little. i also wear loose fitting clothing so that nothing is pressing on my stomach and i don't sit for long periods of time including in the car because it makes my stomach pain worse too. maybe your drs can run some of these tests too if they think its okay to do to find out if you do have rsd spread to your stomach or something else. i hope whatever it is that you feel better soon. soft hugs.
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