Reflex Sympathetic Dystrophy (RSD)

[JasperGhost]

Hey everyone,

I need advise as well as a place to vent and when i came across this website I knew I was at the right place. I've have RSD in my left foot for almost 5 1/2 years and I have learned to sort of deal with that. I am unable to stand for a long time or walk any distance. I thought I was safe from it moving, but on this past "Good Friday" (March 21, 2008) I had to go to the hospital due to a severe headache and the hospital personnel had a difficult time starting the IV. So they finally got it started, but it hurt from the time they put it in until they removed it. Then about three days later my arm started to feel just like my leg. I knew what it was. I now have RSD in my left foot and lower leg and my entire right arm.
I have an issue with my weight. I am so scared of gaining weight. I'm 39 and my waist is growing. I have tried to exercise, but then I hurt so bad that my wife and teens try to avoid me. What, if anything, can I do to try and get into shape without wanting to curl-up and die?

[CDCDAV]

HI I AM A 31 Y/O FEMALE THAT WAS DIAGNOSED WITH RSD IN MY RT FOOT IN APRIL 08. I TOO HAVE SOME ISSUES WITH MY WEIGHT.RSD MAYBE NOT AS SEVERE AS YOURS I HAVE BEEN TRYING TO WALK FOR EXERICISE. I MAKE SURE A HAVE A PAIR OF GOOD SUPPORT SHOES ON AND HAVE BEEN ABLE TO WALK UP TO 2 MILES 3 TIMES A WEEK IT IS VERY HARD THOUGH I WORKS 6-8 DAYS EVERY 2 WEEKS I HAVE TO DO ALOT OF STANDING AND WHEN I GET HOME I DON'T WANT TO WALK ANOTHER STEP BUT I HAVE A SON THAT IS 11Y/O AND WANTS TO WALK TO LOSE WEIGHT, SO THIS HELPS KEEP ME MOTIVATED. MAYBE YOU NEED A SUPPORT PARTNER TO EXERCISE WITH YOU. ALSO I PURCHASED A PAIR OF NEW BALANCE ORTHOPEDIC SHOES WITH ROLL BAR SUPPORT THAT HELPS MY FOOT THEY WERE A LITTLE MORE EXSPENSIVE THAN REGULAR NEW BALANCE BUT THEY ARE WORTH EVERY PENNY. ALSO YOU NEED TO GO TO A SHOE DEPT. WHERE THEY CAN MEASURE YOUR FOOT AND FIT YOU PROPERLY.AFTER MY ACCIDENT I WENT UP 2 WHOLE SHOE SIZES BECAUSE THE ARCH OF MY FOOT DROPPED.

[JasperGhost]

Thank you for the advice about the New Balance shoes. I never thought about going and getting my feet measured. I have a spinal cord stimulator that helps, but still I can only walk about 700meters before I feel like I am walking on melted glass that is still sharp. This makes going shopping fun. I try my best not to use those carts that they offer, because I always tell my wife that somebody else needs worse than I do. She tells me I am wrong and too stubborn for my own good. I still walk through Wal-Mart and other places but by the time we get home I am not worth shooting. I usually end up hurting for four or five days. Most of the time I have to go get and injection to calm it back down if I am not careful. That is why I am trying to find out how to build up muscle without putting myself in the hospital with my arm and leg.

[G0J0G0]

Hello,
My name is g0j0g0, and I have had RSD for 20 months and to date have maintained my weight. the only This is ans wasn't easy for i worked two jobs and has a veracious appetite, but today since I am much more sedintary I have adjusted the intake to accomodate and the weight stays fairly constant. I actuall have lost about seven to ten pounds, but that is the limit of my weight variance. I am fortunate in that the town I live in is located an excellent physical rehab center (The Lakeshore Foundation) that has a heated pool and an olympic class weight training facility and since I m now on disability I make it a point to visit at least once a week. You all are on the right track in the walking and the New Balance shoes are an great choice (I am in the process of wearing out my second pair), for they are made to be fitted to the foot and if fitted properly they are a definite asset. CDCDAV asked if you have a support partner, this is of vital importance for the motivation and someone there to take care of you if by chance you over do it, for you probably will at some time. You might ask your doctor to prescribe a some physical therapy, for this will help in coaching you all in the proper techniques for better health. Good luck to you all and I pray that you realize success immediately, God bless and have a great day, gojogo

[CDCDAV]

I UNDERSTAND COMPLETELY WHAT YOU MEAN ABOUT NOT WANTING TO USE THE SHOPPING CARTS, I WAS VERY HUMILATED THE FIRST TIME I HAD TO USE ONE. I WAS STILL ON CRUTCHES WITH A CAST ON MY LEG THE FIRST TIME I HAD TO USE ONE. THE MAIN THING IS NOT OVER DOING IT WITH THE WALKING BECAUSE WHEN YOU PUT ALOT OF STRIAN ON YOUR FOOT/LEG IT IS HARD TO GET THE PAIN UNDER CONTROL AND UNLESS SOME ONE HAS EXPERIENCED NERVE PAIN THEY CAN'T EVEN IMAGINE THE PAIN. I ALWAYS HAVE SOME LEVEL OF PAIN WITH MY FOOT/LEG,DEPENDS ON HOW MUCH I HAVE BEEN UP ON IT. MY FAMILY IS VERY SUPPORTIVE. I HAVE NOT HAD ANY INJECTIONS OR CORRECTIVE SURGERY, DUE TO THE FACT THAT I AM AFRAID IT WILL NOT HELP OR MAY MAKE THINGS WORSE.MY DR. HAS RECOMMENDED NERVE BLOCK OR REPAIRING THE NERVE. I AM TRYING TO ALLOW MORE TIME TO SEE IF IT WILL GET BETTER WITH OUT ANY PROCEDURES.

[G0J0G0]

Hi All and good evening,
I remember the first time I had to ride one of the shopping carts. It was a bit humbling but I now look to it as a blessing that affords me an opportunity to get out when at times I would not have been able to make the trip. I have resloved that if needed and they are there, then I am gonna ride. I get some peculiar looks, but I have a need and this supplies this need. I try to keep a cane with me and the "looks" are usually held to a minimum.
I hope you all are doing better than well and that the pain levels are much lower than anticipated, be Blessed all^, g0j0g0

[reruho]

CDCDAV
Don't wait too long, this monster needs to be treated early on. The sooner you have treatment, the higher the chance of going into remission. My affected limb is my left arm (car accident). I do PT once or twice a day. It has really helped me. It can be a vicious downward spiral. It hurts to exercise, so you don't. The muscle get weaker and atophy to the point where you can't use them. I do enough to work the muscle but not to build muscle.

[G0J0G0]

Hi CDCDAV,
Rehuho is EXACTLY correct. My physical threapist told me to simply "keep it moving" so I could "keep moving". It almost sounds like a cliche', but it is most important. Another saying he threw my way was "use it of lose it" simply if you fail to keep the area involved in substantial exercise, atrophy will set in. Bone and muscle loss are common in RSD patients and the exercise will help in the prevention of this.
Have a great evening and be blessed, g0j0g0

[Seashells]

Hello I too am battling the weight gain issue. When I broke both of my ankles in an accident 9 months ago I never imagined going from 123 lbs to 154 lbs., especially having always been thin. I am coping with the pain etc. as best I can , but people visually see the weight that I cannot loose because the excercizing is too painfull. So i guess its a two fold battle to accept it yourself and have others accept it and more than that, understand it. I still cannot believe my children's ( ages 31 and 35) attitude to my condition and that hurts even more. They say communication is the key. I am going to try and have my kids attend a therapy session with others, maybe they will see what they can't understand in me, in a group setting. On the other hand talk to a nutritionist as I did and keep stretching and trying. I have maintained my weight finally, still hoping to crack 135lbs knowing the accomplishment is what I need for myself and forget what others say.

[reruho]

Seashells,
My heart goes out to you. It is hard enough to suffer pain but sometimes those that love us give us the most pain. Your children's lack of understanding is difficult to deal with. I find this attitude is quite common among doctors too. They know about the weight gain, yet they say things like; "If you eat carefully, you can hold it in check." The weight gain is looked upon as our failure.

I am very happy you have been able to lose some of the weight. I know that makes you feel better. Recently, I was visiting my parents and I had every bite of food watched and hurtful comments made about me and what I ate. The irony of the situation was that I ate the more balance/healthy diet and lost weight during my visit. Needless to say, it was a difficult and stressful visit that made some of my days very painful.

Reta