Maintaining Healthy Body
 

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. :D 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

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

:eek:

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

Denise, You are doing a great job. You have a lot to be proud of in the way that you are carrying your burdens. Keep your head up. Your mother is so very lucky to have a daughter that loves her like you do. She'll remember you well into eternity.

Denise,
The emotional pain you are dealing with is enormous. I believe that stifling this pain with a veneer of positivity is not healthy. I truly believe griping and wallowing a bit, is smart emotional housecleaning. A loud scream into your pillow is wonderful therapy and having a good cry releases chemicals in your tears-the former is a scientific fact. Think of crying as a form of detoxification.

One of the most "positive" people I know is a cauldron of suppressed anger, which manifests itself in rude behavior that seems innocuous, but is IMO rage leakage. I gave up on her when she chided me for being down when I could not walk, was suffering from excruciating, unremitting CRPS pain, along with an antibiotic nightmare which exacerbated a digestive disorder and simultaneously I was trying to digest the news I had a brain aneurysm which needed surgery. I had pain induced insomnia, could not eat...

Once I got through the stomach issues using holistic products only then was I able to think rationally, because some pain abated and I could nap. The naps gave me enough energy to clean myself with baby wipes and brush my hair. I devoted time everyday to massaging DMSO on to my feet and legs while talking to them. I also allowed myself time to cry and scream when I was alone. It helps.

BioBased,

I must not have expressed myself very well. I fight hard to stay positive; I often don't win. I'm sad plenty.

Back to the original topic, there are many positive things one can do to improve the effect of rsd on your body. I find restorative yoga and meditation helpful.

CD,

I am sorry that you are sad and have to fight to remain positive. I hope that every day gets easier for you.

Denise,

I think you're awesome:) Hope everything shifts for the better for ya just around the next bend.

Thanks for being here!

Thank you all. I didn't intend for this thread to end up about me :nopity: :)
I'm sorry.

It's a good subject. I'd still like to hear other's experiences on the original topic.

Don't be sorry....this is how we learn to help not only the group but the individual as well.
It has been hard since crps is in my mouth. From not being able to chew and swallow properly.. to kinda starving myself. I did have to learn to really listen to my body....don't push. But then stretching and making myself do little things. For example half of my shake stays on counter so in order to get my full meal, I need to get up and get it. If I like to do something and find I can't any more research ways to adapt....like I can't lay on the mat to do a stretch see if there is a different approach to get same results by sitting or standing.... And keeping my mind busy. Even if its a silly distraction so I don't go:eek:with all the pain.:grouphug:

Enna,

I've been :eek: all of my life. Why oh Why can't I be :cool: instead? ROFLOL

Spike
 

Spike, if someone had told me last year while training at the gym for a fitness challenge that I was going to tear/displace 100% of my meniscus out of its discoid capsule, and tear my ACL MCL and PCL I would've laughed in their face! But alas, it did happen, and the CRPS that was once confined to my right arm, hand, and shoulder spread like wild fireinto my entire left leg within 48 hours of knee surgery. My quality-of-life did drastically change after surgery last year, and of course it threw me out of remission. However, I am not one to give up that easily even with the monster that invades my body, so I kept training five days a week on crutches with my trainer doing core and upper body workouts, during the time I was waiting to see ortho, and about four weeks postop. I do believe my diet is what keeps me healthy, as it's pretty clean after seeing a nutritionist a few years ago.

I follow a blend of the 4F's diet, atkins, and have recently Inc. more Paleo recipes into my meals (I lost 160 lbs after my CRPS DX by following a higher protein diet which ultimately probably contributed to my kidney stones even though my stones pre-date The diet and diagnosis ). Unfortunately due to kidney issues, chronic kidney stones, and two recent hospitalizations and surgeries I'm forced to modify my diet, and Decrease my protein and increase my carbs. This is proving to be very difficult for me as I have already gained 10 pounds since last month (a combo of being in the hospital and eating their terrible food/not being able to hit the gym. For me staying active has played an important role in managing my pain, the atrophy and eventual contracture of my right arm (which thankfully is now back to atrophy) in the rehabilitation of my left leg/range of Motion, and the slow spread of CRPS to my left neck and arm. I am able to do light to moderate weight lifting in modified positions, yoga, stretching, physical therapy, and very low impact cardio. Keeping my muscles working and strong has been a huge benefit to my body and to controlling my outrageous pain levels. Due to herniated disc's and my cervical and lumbar spine I am no longer able to participate and active sports or run long distance, so the little exercise I can still do is my refuge.

I enjoyed reading the other responses as well, it's been three years since I've logged in here, I have spent the last three years making 14 hour round-trip drives home to help my mother care for my dying father, who passed away a year ago in September. The last year has been particularly rough physically, emotionally, and my health hasn't been great. i've been a long time lurker and read the boards often trying to glean as much information as I can to help myself and others. I hope to become more active poster with what little time I have to spare.

Wow! You, my friend, are a warrior. Your family and you are in my prayers, as you strive for the benefit of your dying father. God's peace!

-Spike-

staying healthy
 

Hi Spike. I have been dealing with CRPS for over a decade, I have learned a tremendous amount of coping skills in this time. I "did" the whole Lyrica thing as well and determined it wasn't worth the side effects--major weight gain, blurry vision, not being able to function, I could go on and on. Lyrica only helped as well with a small portion of my pain. To stay healthym I absolutely have to exercise, outside!, daily with my doggie if possible. That helps tremendously to create natural endorphins (and the sunlight helps). Also, I take a lot of supplements that help; magnesium, multi vitamin, b complex, fish oil, ester-c, coq10, all very helpful. Eating a ton of veggies (mostly) and avoiding processed and packaged foods helps a lot. It's very hard for me as I have RSD in my hands, but I do my best and it pays off exponentially. Also, maintaining healthy relationships and ridding yourself of the negative ones is very helpful as you can decrease your stress levels. Take care.