If someone would have told me that I would be dealing with a disabling disease, when I was benching 360 lbs, had a 52" chest, and a 32" waist and had to have all of my clothes tailor made, because I couldn't pull off the rack pants over my legs, I would have told them that they were crazy. Well, here I am with a debilitating disease, and my keeping myself in top physical shape did little to halt the aggressive nature of CRPS.

The disease combined with the drugs really made keeping fit and in proper control of weight gain very difficult. In fact one of my drugs, Lyrica is known for rapidly putting the pounds on a person. And because of my disease, gone are the days of making a quick trip to the gym to make sure that I get my work out in. So, I am curious. What are some of you doing to monitor and keep an eye on what CRPS does to our bodies?

As for me, it took me a long time to find a good healthy diet that didn't contribute to the painful plight of having CRPS. What are you doing to keep a healthy balance and do you have any hints of how to remain healthy and still enjoy food, while having CRPS! This disease has dealt a hand, where the cards are definitely stacked against us.

Great post. I too was very active, kiteboarding, surfing, hiking, spinning classes. In the last year- thanks to being immobile, Lyirca & prob depression- I have gained 40 lbs. the extra weight makes things worse but it's tough to get it off. I have CRPS in my feet and they seem to always be on fire. I just got off a knee scooter from a bad injury(5months of not being able to walk). I bought myself bike 2 weeks ago and have been enjoying the sunshine & fall leaves which has helped tremendously in my mood & has helped to build my strength back but my disease seems to vary w/ pain depending on the week and this week- I can't get back out there. Very frustrating. Swimming in the ocean was one thing that helped me but I'm no longer living close to the tropics.
I too have wondered if there is a way to stay active- be strong and feel good. Days when I go to the gym I am often too worn out to do anything & most things agitate the pain, even if its lifting while sitting Down.
Hope you are having a relatively pain free day!

Keeping up with fitness to the degree possible is a big boon to my mood and general feeling of well-being.

I have found for myself that limitations have made me much more mindful of how I am exercising and I am finding that interval training is REALLY important. My nerves end up getting tweaked if I do any one thing for too long. What didn't use to be repetitive strain is now. So that may mean I only do ten minutes on the stationary bike then 10 on the elliptical. On days when I feel tired I will do a lazy swim.

I have ended up with more variety then I use to have. When my foot is really fussy I can still kayak or do sitting and prone yoga positions. Before this, I had never tried yoga at all. I have also gotten creative about modifying exercises or positions so I can safely do them.

And diet...well except for the cupcakes it is pretty clean. Hey, I can't be good all the time!

I admire what you are doing so much. I'm flat out unable to do anything any longer. My disease has me home bound and in way too much pain to do anything to keep in great physical shape any longer. I struggle just to make it to the rest room and the fridge, before my pain knocks me flat on my back again. Though, I must say, the diet that I am on to help keep my CRPS pain levels down has done remarkable things to help keep my weight where it really needs to be. *SIGH* oh, the good ole' days! GRIN

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