Quote:
Originally Posted by HeatherAnne
HI VANESSA!
Welcome! As you are, I am new to this forum but definitely not new to RSD. It sounds like you are definitely on the right track though with PT.
To introduce myself... I am HEATHER, and I'm not too much older than you, I'm going to be 21 in May. I have had RSD for 7 years now and I know what you are going through with being in high school and having RSD, so if you need a shoulder to lean on, let me know. It can be toughest when you are young with RSD becuase of your peers. I remember many people my age not understanding what it was and making fun etc..
SENSITIVITY... I remember my leg being so sensitive I couldn't sleep with sheets... One of my mom's friends with RSD recommended me using a VELUX or VELOUR blanket. It is extremely soft and so I wrapped myself in that in order to sleep. I remember using stupid things around the house that PT made me tap on my leg to make it not sensitive anymore. And I mean stupid and wierd things such as bottle caps, toothpicks, etc.. At the time of doing it I thought it was stupid but within a year I was able to touch my leg on a more constant basis. I still have days that happen that even a breeze hurts but its MUCH more manageable. PLUS I still do the whol desensitizing thing on my own and its like 5 years after I did that in PT...
BE POSITIVE and if you have any other questions... keep em coming  |
I have had the CRPS in the left foot now for about a year and a half. Of course no one knew what it was...or what to do.. I had to do it all myself.. from diagnose to treat... I found that wearing an elastic tubing over that foot and lower leg.. not a real tight one, but just medium .. that it not only helped with the swelling, but also.. protected it from anything touching it...and when it was completely covered like that.. it took away the allodynia.... all that running hair brushes and junk over it at therapy, was nothing short of torture. I do remove it at night.. I make a gap over the top of the foot and PULL FAST.. so it only hurts for a second.. THEN.. I use a very very light down comoforter for my bedding.. I can make a "tent" with it and it stays up and off the foot long enough for me to get to sleep with the pain meds.. I can rest well... if it bothers.. just poke it up in the air with the good foot. It is warm in the winter ..no weight and stays put very well. I can actually massage it at night with gobs of lotion or heavier cream. The spasms continue to be an issue, but the pain med makes them subside and they are better when I am ON the foot rather than lying down or off of it....
I use oxycontin and oxycodone...I have tried every known remedy... they mostly make me very sleepy.. I have adjusted to the narcs.. am not addictied in the way that I use it for a good time.. just pain relief... stay on same dose always...I have gone off cold turkey and that is bad.. but no one schooled me in going off..also .. the oxycodone is so short lived, I get into withdrawls if I miss , even a few hours over.. icky.. I probably have more stuff in the "tried and failed" drawer than Michael Jackson, but no urge to try them again.. including methadone, morphine and many others.. nerotin etc.. Lyrica.. Celebrex..which made my ulcer come back.. too many to name.. nerve drugs, tramadol.. those things.. but the oxyicontin and codone are my companions for life unless I can get to the ketamine treatment.. MY DREAM..
Dr Ronald Harbut is my doc of choice, but his clinic is not operating currently.
Money is an issue for his contiuing the work..
Good luck to all.... also distraction therapy is good.. get so involved in something it takes your mind off of the pain and symptoms. My CRPS/causalgia is from doc hacking up nerves on the top and side of my foot after three major surgeries. Should have got it right the first time and I wold't be in this jam.
Sherrie Gregory.. SEASONED Citizen...