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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=MiaBelle;5070679]This disease seems to take control over a lot of our body. I am always in more pain in the winter. The summer is warmer and is better for me. I use a tanning bed in the winter to try for a few minutes of warmth.
Every year I get worse. My CRPS started in left leg. Since the surgeries for two implants I have pain in back and hips. This year I started having pain in my pelvis, out of the blue. I think it's hard to be intimate with our spouses because of pain everywhere else too. You are not alone.[/QUOTE]

It does take over a little more each day it seems, sigh. Winter and Summer are my worst months, winter is way too cold where I live and Summer is way too hot for me. Spring there is way too much rain so that leaves Fall where I can have a little break from weather changes. In the winter I use a heated blanket in bed and a smaller one for in the living room if I want to read or watch tv in there with the kids. They are great for when you are cold. I hardly go outside in the winter only if I have too. I am in a motorized wheel chair now from all the atrophy in my legs cause they are so bad. I can't walk too far anymore, cause I need to use cains and the cains hurt my arms which have R.S.D. in it too. It sucks being 34 and using a motorized wheel chair its sad very sad, I feel like a total idiot, but have no choice since my feet are so swollen and bad. I go through bouts of swelling like crazy swelling where my skin splits at my joints cause my skin just can't stretch anymore. My skin has become so tough that my sweat in my hands and feet can't come out anymore like normal it comes out in blisters, and there becomes so many that the whole surface of my hand or foot becomes moveable like there is a layer of water under your skin and if you pop one they all pop and all your skin comes off, so then you have to wrap up your hands or feet till they heal. I can't wear anything but cotton, soft cotton but not over soft either. I have to wear socks all the time cause even a small breeze hits them and I cry like I have lost a loved one, truly gut wrenching. Also socks creates a barrier in case I step on something. My feet swell all the time, constantly different sizes so I can only wear men's slippers the biggest they have, because they are usually the ones that fit when I go out. I have become so Depressed, the Specialists diagnosed me with Major Depressive Disorder, P.T.S.D., Bereavement (loss of oneself, loss of identity). I am now seeing a Psychologist every week so I can try to get out of this really bad funk I am in. Oh, and watch out for skin, hair and nail changes too. I have lost a lot of hair in places, gained some in others, my nails have striations on them and are very brittle and grow quite fast. I was recently in the Pain Program at St. Paul's Hospital for a few weeks testing out there Ketamine treatment, which works well to get some good physio therapy in while it doesn't hurt, anyways I suddenly became allergic to all adhesive tape, Band Aids, anything like that. By the time I left the hospital both my arms were burned to the last layer of my skin and that was within 24 hours of putting the tape on so they had to keep moving my IV and then they decided to put a PIC line in directly to my main vein and started out with a big type of square adhesive tape they put over IV's and they had to keep cutting it shorter and shorter, by the time I left hospital they had burned both my arms and both my ankles with adhesive tape or with diabetic socks which I suddenly found out that I am allergic to the latex and something else I can't remember at the moment and it burned right to the last layer of my skin before I noticed something was wrong cause I was so drugged up on all high doses of Ketamine, Morphine, Dilaudid, Gabapentin, Baclofen, Cymbalta, Domperidone, Cesamet (Pot Pill) that I didn't feel the extra pain I just thought it was the normal pain and the Ketamine wasn't working that great down there. Yeah, boy was I wrong. Its been 9 weeks now and I am still dealing with the burns. I look and feel like a mummy lol. And if you thought that was bad then, the burns got infected and sent some bad bacteria and parasites into my bloodstream and the parasites entered my digestive system and made it so I can't digest any food so its been something like 26 days now that I haven't been able to keep down or it goes straight through me and quickly too. So I have been pretty miserable lately until I found this site where I hope I can help some people, or maybe get some help for me too. Its sure nice to vent to someone even if you don't know if they will read it or not, even if one person reads this post then I will felt listened to and thats all I want, is for someone to listen and understand or try to understand what I am and others are going through, because at home, my friends (I only have one left now, and my physio therapist introduced us because he has RSD too lol, in my small Village of about 1000 people it was really rare to meet someone else who has it. All my other friends left as soon as they found out just how bad I was and I couldn't play sports with them anymore or party with them or go out on a whim with them or help them fix their computers or machines for them they had no use for me anymore.), the Community sure doesn't understand the general population as a whole don't know about RSD or CRPS which ever you like to call it. So one day attached at my door by someone (Who Knows) was a piece of paper with this site address and info about it. And said what the ^&%^ I would try it out.. I am glad I did this is the first time since I have had my disease where I can write about it, and be surrounded by people who understand and not be judged for how they feel or whats going on with them at that time. I've probably put you to sleep so I will stop here. Hope you all have a better day then yesterday.





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