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 02-03-2012, 02:45 PM #21
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Take a look at Marksdailyapple.com and see if you can comfortably combine what the 4Fs outlines with Paleo "dieting."

And if you don't like fish--don't eat it. Farmed fish is not as healthy as wild caught, btw! It tastes different as well...

Eat chicken, eggs, beef, and pork--and game meat if it's available. If you can buy organic (grass fed, cage free, etc.) that's ideal. Or at least natural--we certainly don't need extra hormones and other scary stuff. I find Costco has some decent products if you read the labels.

I've stopped losing, but I indulge more than I should. I've stopped gaining though, and considering I dropped 30 lbs and am sedentary, that's not bad.

The idea of eating lots of small meals is to regulate your blood sugar. The idea behind Paleo, is to never trigger huge surges of insulin by avoiding foods like grains. Also, eating fat (olive oil, butter, coconut oil, nut oils, lard, tallow, palm oil) (never corn or soybean oil, margarin, crisco, etc.) causes satiety--you won't crave snacks, because your body has a "full tank" let's say. The "low fat", "fiber rich", fake sugar, over processed garbage we call food in this country is making us overweight (and likely compromising our health) IMO.

If you buy higher quality food it will be a bit more expensive--but if you stop buying processed food, you end up spending less every month!

Trying eating a donut or chips or whatever carb bomb you like. Eat as much as you want. Pay attention to how you feel. You'll feel sick long before your body feels "fueled" (this is the best explanation I can come up). Pay attention to how many hours before you're hungry for your next meal. (As a side note, pay attention to your pain level as well.) On a different day just cook some bacon or sausage and eat until full. See how long before you're hungry again. Until you have a feeling what foods are doing to your body, you have to trust what "diet experts" claim. I know what spikes my blood sugar, what causes me to eat more than I should, etc. Try this experiment with different foods!

I also find that if I feel like having a cheat day, I do less damage by having a cheat night! Once I start the insulin cycle, it's hard to stop. So--if I'm craving pancakes, I make them for dinner. I make sure and have fat and protein too, so I don't make myself ill. If I feel like baking, I'll eat the portion I want (with allrecipes.com you can divide recipes for smaller portions and look up recipes you want by putting in the ingredients you want and don't want!) and I send the rest to my neighbors!
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Old 02-03-2012, 03:09 PM #22
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Thanks for all the ideas. I will definetly check out Marks daily apple. I know that eating the wrong foods I often get a headache. So I need to do something such as eating smaller meals but more frequently. Thanks
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Old 02-06-2012, 10:38 AM #23
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Thanks for all the ideas. I will definetly check out Marks daily apple. I know that eating the wrong foods I often get a headache. So I need to do something such as eating smaller meals but more frequently. Thanks
I, when I got my RSD Type II, was 150lbs. Over a period of about 7 1/2 months from date of my surgery, I lost almost 35 pounds. Then, in the past 6 months, somehow I have managed to gain that back PLUS another 10 to 15. Yikes!And my diet has changed - almost all spices are gone, sweets are gone, most condiments gone, even many juices, sodas, and even some fruits gone because the taste gives me extreme pain.

Now if I could just drop the weight again lol. I assume this is probably normal??
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Old 02-06-2012, 10:51 AM #24
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I know for me alot of the problem is my neurontin. I really want off this med. but all the meds like this put weight on. So I don't know. Maybe I can just get off the med altogether.
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Old 02-06-2012, 12:58 PM #25
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I know that with the Lyrica where I gained 20 lbs in a week that it was frustrating...but once I was able to move around more half of that came off. I think that it's more beneficial to make sure you are getting the pain relief you need so that you can be more active. That said...I am no longer taking Lyrica or neurontin because once I had spread they weren't helping me enough to make a difference. So why take something if it's not really helping enough to be worth it? But even going off them, it's not like my weight has gone down much...but I've only been getting more active the last month or so and hopefully once I get back to work (hopefully next week...I'm really excited) then some of the weight will come off again just from me being more active. Of course...I think it will help when the weather warms up too because then I can go outside and walk around. Being in the house because it's too cold out really limits how much I can actually do right now in terms of physical activity.

But like I said...some of my problem is also the inflammation and swelling that make me bigger than I should be. I want to wait to see how things go once I return to work and then decide if I want to try going back on an anti-inflammatory or not. I want to limit the amount of meds I take as I am concerned about the long term effects of those things on my body...but if taking them will make my quality of life better then I will. Just want to wait and see on that one. And I may try tDCS before anything if my doctor is on board with it...will be worth a shot anyway.
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Old 02-06-2012, 04:18 PM #26
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I know that with the Lyrica where I gained 20 lbs in a week that it was frustrating...but once I was able to move around more half of that came off. I think that it's more beneficial to make sure you are getting the pain relief you need so that you can be more active. That said...I am no longer taking Lyrica or neurontin because once I had spread they weren't helping me enough to make a difference. So why take something if it's not really helping enough to be worth it? But even going off them, it's not like my weight has gone down much...but I've only been getting more active the last month or so and hopefully once I get back to work (hopefully next week...I'm really excited) then some of the weight will come off again just from me being more active. Of course...I think it will help when the weather warms up too because then I can go outside and walk around. Being in the house because it's too cold out really limits how much I can actually do right now in terms of physical activity.

But like I said...some of my problem is also the inflammation and swelling that make me bigger than I should be. I want to wait to see how things go once I return to work and then decide if I want to try going back on an anti-inflammatory or not. I want to limit the amount of meds I take as I am concerned about the long term effects of those things on my body...but if taking them will make my quality of life better then I will. Just want to wait and see on that one. And I may try tDCS before anything if my doctor is on board with it...will be worth a shot anyway.
Going back to work!!!!!! I am so excited for you!! You deserve all the credit!!!!!!!!!!Please keep us posted!!!!!!!
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Old 02-06-2012, 05:47 PM #27
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Going back to work!!!!!! I am so excited for you!! You deserve all the credit!!!!!!!!!!Please keep us posted!!!!!!!
Oh believe me...I WILL...lol! I am very very excited and optimistic that I will get the full release to go back to work at my appointment on Friday. I've been working really hard. They wouldn't let me go in when I got the release to go back for half shifts but I've been using the time to really build up my endurance. I wish I had been able to do those half shifts just because I think that would have been better preparation but sometimes we don't get what we want and have to do the best we can with what we get. But it's very exciting.
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Old 02-06-2012, 06:14 PM #28
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congratulations catra! I hope I am not far behind you. Still have some work to do, but I hope March or April will prove positive. I will send you a prayer for Friday.
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Old 02-06-2012, 10:34 PM #29
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Oh believe me...I WILL...lol! I am very very excited and optimistic that I will get the full release to go back to work at my appointment on Friday. I've been working really hard. They wouldn't let me go in when I got the release to go back for half shifts but I've been using the time to really build up my endurance. I wish I had been able to do those half shifts just because I think that would have been better preparation but sometimes we don't get what we want and have to do the best we can with what we get. But it's very exciting.
Catra, I so envy you!!! Best wishes! The last time I tried to work, back January - March 2010, I developed a very very serious infection in my arm that actually got worse daily even on 2 antibiotics and was hospitalized. My former job refused to let me work with doctor restrictions (1 hand). Hope yours is... I never had such pain as trying to do work with my bad arm back then. Ended up getting pulled from work totally by my orthopaedic surgeon, and my neurologist refuses to let me work until we get my stage 2 and pain under some control.

Please post when you return to work, I for one am really interested to see your success!!!
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Old 02-07-2012, 03:27 AM #30
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Catra, I so envy you!!! Best wishes! The last time I tried to work, back January - March 2010, I developed a very very serious infection in my arm that actually got worse daily even on 2 antibiotics and was hospitalized. My former job refused to let me work with doctor restrictions (1 hand). Hope yours is... I never had such pain as trying to do work with my bad arm back then. Ended up getting pulled from work totally by my orthopaedic surgeon, and my neurologist refuses to let me work until we get my stage 2 and pain under some control.

Please post when you return to work, I for one am really interested to see your success!!!
Thanks...i will definitely post an update of how things go once I am allowed to go back. I am an assistant store manager at a retail store so for me the big obstacle (other than getting some of my symptoms under control so I could drive again) is my endurance. After spending most of last year stuck in a wheelchair not able to stand or walk at all, it has been a long road to build up any sort of endurance...but I am finally there. I still will require the accomodations of being able to use my walker and to be able to wear gym shoes/gloves/scarf as needed...neither of which should be difficult to accomodate. But with those two things I should be able to do my job. I've worked so hard for this and I know going back won't be easy but I am just not cut out for this sedentary lifestyle that has been forced on me by the RSD. Can you say stir crazy?

I am also hoping that once I go back and am in a situation where I am "forced" so to speak to move around that this will improve my health over all. I know from when I was working back when I got the ankle RSD under control that I felt a lot better mentally and that work actually helped me to take my mind off the pain. The pain was always there of course but being focused on the many many things that you have to juggle on a daily basis at work sort of pushes thoughts of the pain to the back of my mind. At least...I HOPE that's how it works this time too.
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