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-   -   Maintaining Healthy Body (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/227677-maintaining-healthy-body.html)

-Spike- 10-23-2015 09:20 PM

Quote:

Originally Posted by cdwall (Post 1179467)
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:

cdwall 10-25-2015 04:22 PM

Quote:

Originally Posted by -Spike- (Post 1179475)
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

-Spike- 10-25-2015 06:40 PM

Quote:

Originally Posted by cdwall (Post 1179734)
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.

BioBased 10-26-2015 05:24 AM

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.

cdwall 10-26-2015 07:10 AM

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.

BioBased 10-26-2015 02:09 PM

CD,

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

visioniosiv 10-27-2015 11:55 AM

Denise,

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

Thanks for being here!

cdwall 10-28-2015 12:34 PM

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.

Enna70 10-30-2015 10:09 AM

Quote:

Originally Posted by cdwall (Post 1180249)
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:

-Spike- 10-30-2015 11:01 AM

Quote:

Originally Posted by Enna70 (Post 1180608)
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 :eek: 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


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