What diet are you on if you don't mind me asking?

Denise

Hi Denise,

I use Dr. Weil's Anti-Inflamitory Food Pyramid. This way of eating has really decreased the amount of swelling in the worst areas of my CRPS infected body, since these foods are, as the header states, of an Anti-Inlamitory nature. Some foods, for example: Red Meats, really make me flare up badly. Though I must say, when I am around friends, I might go off the Pyramid on occasion. I refuse to have CRPS completely dominate my life, so I do just flat out chow down on whatever I'd like sometimes. Here is the link:

http://www.drweil.com/drw/u/ART02995...d-Pyramid.html

In my opinion diet plays a very important role in treating MY CRPS. It may be different for others, but eating a good healthy diet REALLY TRULY makes a difference for me. I find that website to be extremely helpful. I hope it serves you as well.

-Spike-

Thank you Spike. I'll check it out. I've tried Dr. Wahls' Diet for MS and The Paleo Mom's AIP diet. Both eventually with tweaks and modifications to better suit me. On Dr. Wahl's diet I couldn't keep myself out of severe ketosis even though I wasn't at that highest level (there are three levels). I'm sorry to say after a year and a half of careful management, I've been horrible with the sweets lately. And one thing I know for sure is that sugar increases my pain and swelling! I think I'm back on the right track now. Or getting there. Perhaps your diet will help me get closer to the best diet for the n=1 that is me. My problem is I lose my appetite on these diets and just stop eating. Now I'm trying to keep it loose enough so that doesn't happen but strict enough to keep me feeling good.

As for your original question, like many of us, I was very physically active my entire life until the CRPS/POTS hit me quite suddenly nearly three years ago. Right now I do what I can which is many days just trying to take care of myself and my dogs (no walking- big yard). I do some restorative yoga when I can. I can't be on my feet for more than a few minutes because of my POTS shooting my heart rate up so high so I'm trying to find the right recumbent exercises to build myself back up. And like so many of us, yourself included, I grieve for my former physical abilities and want them back.

So very well stated. Thanks for this post. Chocolate is such a magnet, since it is so enjoyable for many people. Yet, candy bar types of chocolate just sends my pain levels skyrocketing. Another one is chips, oh my goodness, does that one ever nail me hard pain wise.

EDIT: I'D LIKE TO ADD: One thing I try to make sure of... I refuse to be a slave even to my meal plan. I'm like you.. this catches me.... at times I do really well with eating right.. but there are times that I just plain crash. And I think that is because it is so hard to constantly fight the battles that we must fight. It really is HARD! IMO

Some time, I'd love to hear a doctor speak about how aggressive this disease is as it uses the activities and foods, which people really do generally enjoy, just to bring added pain and struggle to CRPS patients. And then to have that same doctor give us recommendations beyond just physical therapy on what we CAN do--That would make it even more interesting. That would be a very interesting hear, IMO.

I have a question for you. And please do tell me if you would rather not answer, which is fine.

Here it is... Tell me about your POTS and how that complicates your CRPS? Would you mind?

No, it's no problem. You might want to look into it because you could have it too. They say about 10% of people with CRPS also have POTS. I believe it's more because dysautonomia is a very common symptom of CRPS.

My worst problem is if I stand up my heart rate goes up from 40 to 100 beats higher per minute (normal is around 15 or 20). Often exceeding my maximal calculated heart rate. This would probably be because my vessels don't constrict properly to keep gravity from allowing the blood to pool in my lower body and keep enough blood flowing to my brain so my heart has to beat faster. If I stay up long enough my heart rate will start going down some but then I get dizzy, have tunnel vision, etc., and eventually pass out, presumably because my heart can't keep up with pumping enough blood to my brain.

There are a bunch of other symptoms and obviously a range of disability caused by it. I consider myself moderately disabled because of it right now. Some people can't get up at all. Although some people find a treatment or treatments that help, it can be very refractory to treatment. Mine is.

Here's a good link:

http://www.dinet.org/index.php/infor.../pots-overview

Thank you for this. So, not only do you have the difficulties associated with CRPS, you also have this burden to navigate through every day too? Eye-eye-eyyyyyyye

Yeah, it's a bummer along with my personal problems right now. My mother is dying and my ex husband of 32 years just remarried a girl 25 years younger than him. I'm taking it pretty hard.

I know there are others in worse shape and I appreciate how blessed I am in many ways. But you're also allowed to feel your own personal pain, right. I'm trying so hard to deal with all this in a healthy way. I fight so hard every day to find joy and reasons to stay here.

Denise