About a year ago I cut out refined sugars and all artificial sugars. I was the total Diet Coke addict. It fact, when I'm stressed out now, I don't crave alcohol or chocolate- I want a Diet Coke. And it really truly helped my pain levels. I've had RSD forever, and it's one of the better things that I've done for myself. And if you're avoiding gluten- sushi is still in- rice is gluten free! You really have to just figure out what works for you. Keep a food diary! If you aren't feeling so great, see if you can track it to a certain food and then eliminate it or modify it.

One of the other great things that I've done for myself is take a MBSR class that is based on the principles founded by Jon Kabat Zinn. Maybe $300 supplements aren't for everyone. But learning to be more at peace within this uncomfortable skin that we occupy is something that anyone can benefit from. Check out a book from the library to see what its about. It just helps you to be more focused and aware and less stressed by what you are actually aware of. I really recommend it to people, in pain or not.

Lin

Sushi is out due to the raw fish and the kinds of fish .
If you read a lot of this thread it encompasses so much more than just diet.
It has a lot to do with a mind set, and a life style to actually want and will yourself to get better


Peace


GnP

Hi ya homie!
Now, this has got to be one of the best posts on all this "stuff" we are talking about! I'll give you a A+ for this post!! thank you, GNP your post has lots of meaning and it is all so natural, I mean acupuncture was done yrs. and yrs. before our time, I have been reading up on this procedure and may give it a whirl! Thanks again for a well, written good, well EXCELLENT post, that I needed to hear about from "one of our own"> having it!! your a "GEM" sista! LOL Love ya homie~Love Desi[ P.S. Couldn't agree more with the Epsom salts! I am addicted to it!) LOL

Oh, my Sushi days are over! It's a shame as well...because I feel so refreshed after a Sushi fix. Now I'm really mad at myself for being afraid to try it when I was younger!

This disease really does it's best to rule your life I guess...
Personally I don't think that my diet was ever really bad by 'normal' standards to begin with! I've always been vuluptuous by nature... and I say "nature" because I've never been one for junk food or sugar and with my busy schedule I should be a bean pole!! I eat lots and lots of salads! (Although in the winter my body craves warmth)

It's frustrating when you think something is working yet the pain returns! It's like being on a diet for weight and Phlatoeing! (Only this is more painful!)
I do the Epson Salt baths, stretching, antioxidants...the whole shabang!

Does anyone here have a favorite recipe that's good for you with this horrible, despicable, life controlling, crappy disease???? (Sorry-venting)

Do any of you take Antioxidant supplements?

Has anyone ever been harmed by intaking too many foods and supplements with Antioxidants?

Please fill me with all your wisdom! This is a great post, thanx for posting it!


Hugs to you all my friends!

GHL

Oh fellow Homie Desi
You are one in a million
so kind and always thinking of others when your plate is so full
If there was parity and justice in this world a little angel would come down from heaven and give you your get out of jail free card right about now

GHL- if it were only so easy to pass out wisdom learned.. through osmosis
You would certainly save your kids a lot of hurt ,and lessons to be learned ;lots of tears .Wouldn't it be nice if life worked that way
But then you wouldn't learn all those great lessons about yourself

I guess it works that way with RSD .The longer you have it the more you learn what works and what doesn't work for you .
And boy do you grow .
If you thought you had compassion and empathy before, for most...through the roof .I said, for most

Asking a lot of questions is certainly a great thing.The more you know. Information is power .Make sure you disseminate that information properly .
This is the internet after all. It can not take the place of a real doctor or of real people for that matter .You never know

As with doctors I would never take the same advice from only one RSDer -Maybe they are not doing it right even if they have a lot of experience and time under their belt
I know I thought I was following doctor's order's and being a good positive thinking patient many times on this journey and it was only when I took some time by myself to reassess everything that I realized I was in a rut and everything was not OK !!!!!!!
This is VERY important !!!!!!!!!!!!!!!!!!!!!!!!!

I do know GHL that for now you have to accept that this is part of your life and though you don't like it you have to make some some sort of peace with it .
I remember I started to have a much better life when I made pain my friend
If I hated it and RSD and whatever else was/is wrong with me it became so self defeating.
You are hating part of yourself and that brick wall will become a reality
All that terminology of frustration and being mad at yourself is bad for this illness.
You have to turn it around and try to ease your way through these things with kindness and patience
Stress and RSD will only make things worse.
Call yourself a Home Entertainment Centre .Make bad things funny .- Remember to laugh -
All these things are really good for you now .The rest will come
You cannot be so hard on yourself .You have so much going on .
Everything got turned upside down and inside out and you are only doing your best for that you already earned the gold star
Us type triple A's have to learn how to be Z's .
I have done it in many ways .You can do it too.

So keep on doing what you are doing with more kindness - re read this thread - there are great books(Jonn Kabat Zinn in particular) anti- oxidants- food lifestyle to get you started -

you have a wonderful attitude to get you to a great place already


Peace
GnP
.

I agree that this is a really great thread.

Vitamin E causes my arthritis to flare and affects the RSD as well. I tried it in very low doses and still had trouble.

B6 gives me headaches in the kind of doses the doctor recommended. I had to take less than 1/ 20th of a pill just to tame the headaches. Be careful with niacin since it can cause a flush which is most unpleasant. It would be even worse probably if I'd had the RSD at the time.

GreyHoundLover said it pretty well; "This disease really does it's best to rule your life I guess...". I scoffed early on when they told me that I had to learn to control the disease since I thought I was doing everything possible. I've learned an awful lot since then; you really do have to find ways to ignore it and tame it. Short of a remission it's your best chance. As the condition has gotten worse I've gotten better at handling it and the medications that I'm taking now are more effective.

And still I always have to "talk to the hand". Fortunately it lets me do most things that I really have to without balking so long as I don't ask much of it.

Heya,

I definetly feel lots better when I am fully vegan and eating no wheat. Yes, it's hardcore eating without dariy, eggs, meat or wheat but I do feel better, have more energy, think better etc. However as I need live in carers I can't expect many of them to create macrobiotic vegan food (though I wish!). I do try and make an effort to not eat processed food, fizzy drinks, sugary stuff etc. My RSD affects my blood sugar levels as well so I try and make sure that I eat slow release foods.

I do find that eating meat and dariy do definetly make my pain worse. as do mega processed foods. But could just be me and I have full body RSD that means my body can't handle food well anyway.

much love

froggaxxxxxx

Thanx GNP for your thoughts and suggestions.

I have learned so much from others here, but you're right, a lot of what I have learned I have figured out for myself because of my desire to one day heal while still actively moving through life, as difficult as it is. (With family, work and friends)

Please don't misunderstand me though... I really have accepted the fact that pain is almost always present in my life (for now). But I just can't bring myself to call it a friend. In fact, I'd like to get a Restraining Order against it and keep it as far away from me as possible!

Imahotep,
Your approach of ignoring it is exactly what I do to get me through it all as well. I keep myself busy and focus while trying to keep the pain in the distance. I use this method of coping with my every day "challenges" (Known as "tasks" in the outside world) It's very useful, I completely agree.

I've been pretty proactive in seeking my recovery through diet, therapy, support and my ever faithful, inner strength. I know I'm giving things up for the 'possibility' of feeling better. Possibly feeling better is what drives me actually!

So anyways...
I feel this way about frustration. Having pain constantly and then having to give up anything that is enjoyable is frustrating. I, personally, really think it's okay to be frustrated at that!!!! (Especially when it the recovery your aiming for doesn't seem to be in sight)

I'm really not beating myself up over not eating Sushi earlier in life, or anything else I haven't done up until now. (I was trying to be cute...guess it didn't work )


I can't lie to anyone..My armor and shield were in storage from previous battles fought and won. I don't like the fact I have to get them out again. This rival I have, RSD, was not invited by me. I did nothing to indicate it was welcome in my body. The fact is, It just stormed in along with all it's little painful soldiers invading my 34 year 'young' self and deforming all of my limbs. Still, I believe that I have RSD, it does not have me, therefore it's not me I'm mad at. It's genuinely RSD!

But I just can't bring myself to call it a friend. In fact, I'd like to get a Restraining Order against it and keep it as far away from me as possible!
Ok that IS VERY Funny lol

Google Todd Lepine MD .He is in Mass.
You will be on your way to wellness .I promise
Now I am off to get well - dystonia is GONE- my hands - my initial RSD site are FANTASTIC!!!!!
still have much work to do but these are very promising signs!!!!!!!!

Pm me anytime

Peace
GnP

I apologize, but the initial posting may be long. I live in Florida, but in 2001 went to Missouri to attend my son's graduation from Army Basic Training. While there, and asleep, I was bit on the neck by a brown recluse spider (yes we did see it). Up to this point I was healthy, worked out every other day and had a career. Instead of the venom attacking my skin, it attacked my sympathetic nervous system. From this I developed RSD first, then CPS, then several years later fibromyalgia, followed by RLS. During this time I also had back surgery due to an injury, have really bad headaches, horrible leg cramps (mostly at night), and put on 75-100 pounds from the medication. Oh and I went through menopause during all this too. My RSD went from one part of my body, to full body. You could draw a line down the middle of me and my left side is more severe than my right side.

I sympathize with the stub toe. When that happens to me I come very close to passing out. And we won't even talk about paper cuts. I really want to lose weight, but am not sure how to do it since exercising is an excruciating proposition for me. I did put in a pool. I never knew you could get out of a pool and be sweating.

Ok...enough. If anyone has any ideas or suggestions...