Reflex Sympathetic Dystrophy Support Group

hi Linzxx, i am so sorry to hear you are still on crutches. i know how difficult that is. i was on crutches about 2 years. not able to put weight on my foot. i am also housebound. so i know exactly what that feels like. i am so sorry. so the rsd specialist did not know if you have rsd or not. its good you do not have the typical stmptoms, but what does she think is wrong? i do not like the fact that you have burning pain. that is a big symptom of rsd. is it changing colors, or feel cold to the touch. those are other symptoms. you can look rsd up on the net and find out more information. that is what i did, because one of my mom's friends said she knew people with rsd and it sounded like it. so i looked it up, and my symptoms matched. i was diagnosed finnally by a doctor with it, not to long after it. are you doing any pysical therapy? have they casted it, or do you have a splint on? you need to try to put some weight on it. just small amounts. i know how difficult that is to do. i went through it. you want to keep your leg and foot moving. so they do not atrophy. this is really important. try not to compensate for the pain. as i did. i went through alot of physical therapy. now i use a cane to get around. what is your pain level? i am so sorry you have to deal with this.

hi dragonfly,Im sorry to hear you have been through a bad experience like me. Its good to hear you can get around on a cane though-will it be likely that you will walk again?What stops you from walking? My biggest fear is that Ill never walk again:I get so desperate I wish my leg to be amputated at times :(
Yes when the pain flares up it is like a buring pain and lasts about a week. I stil with my legs really bent under a pillow to alleviate it wich makes my leg more bent :( Its stuck that way and I cannot straighten it. My leg does feel cold to touch if I dont hsve s hot water bottle on it butI think thats due to lack of circulation because I cant use it.
I am doing physiotherapy but I keep having setbacks which means I can do less and less.It is impossible for me to put weight on my foot just now :(
I am getting a MRI scan soon to see whether there is physical damage causing my pain.Please reply soon
xx

Hi, Linzx. There has been some question as to whether or not I have RSD too. 2 Dr.'s have diagnosed me with it and a 3rd says that he's not sure. I have an appointment to see a specialist in January. I have had that appointment for over a year now.

I always have some pain in both legs (the left is worse then the right) but sometimes, usually about once a month, the pain gets extremely bad to the point that I can't walk or bear weight on my legs or feet at all. During these bad spells, I can't stand to have anything touching my legs or feet. Not even socks or a blanket. Air blowing from a fan is even painful on my skin.

My legs also get extremely cold. The colder my legs and feet get, the worse the pain is and the worse the pain is, the colder they will get. Sometimes it feels like the blood rushes out of my legs quickly. Sometimes it feels like freezing cold water is pouring down the inside of my legs.

Although my legs are usually cold on the inside, sometimes my skin burns on the outside. It is very painful, like the skin on my legs and feet have actual burns on them. My mosquito bites feel like someone has put cigarettes out on my skin.

I also get a deep aching feeling that starts in the center of my bones and works it's way out. Sometimes the pain seems to focus on my joints, especially my hips, knees, ankles and foot bones. When it gets bad, my entire legs from hip to toe will throb and ache very painfully.

Other times, I will get a sharp shooting pain like a pinched nerve that goes from my lower back, down the side of my leg to the top of my foot. Sometimes I will get a zapping, electrical pain that follows the same path.

I have noticed some increased hair growth on my toes and legs. The hair on my legs actually seems to be growing in patchy. Certain areas grow in quickly while other patches don't seem to grow at all. Weird, I know. My toenails do seem a bit thicker and yellowish to me but the Dr.'s say it is not a significant difference.

My legs have flushed red before. I never really paid attention to it. My husband and my mother were the ones that pointed it out. No one has noticed any color changes in a while. I'm not sure if they change colors at all anymore. This is the main reason that the 3rd Dr. is questioning my RSD diagnosis.

I hope that this is helpful to you. I know that I have described a whole lot of different symptoms here. My pain is constantly changing. It is never consistent. I don't know if MY symptoms are even typical with RSD. Some Dr.'s say they are, some say they aren't. Even the specialists don't seem to know a whole lot about the disorder. I hope that you can find some answers soon. Good luck. :)

Forgot to mention that although my legs and feet are always cold, my feet will get clammy and sweaty often. Also, when I have those bad pain spells that I was talking about, they usually last for several days to a week. Again, good luck to you. :)

hi jules,
Your symtoms do sound very extreme and it does sound like you have crps. I know someone who had burning all the way through her body it was so bad and senstitivity to toch is a key symptom. Have you had blood tests to rule out any condition you might have?How did it start?
Thanks for your reply
Linz x

The symptoms in my legs started after a lower back injury in January of 2007. What type of blood tests to you mean? I went to a rheumatologist to rule out anything autoimmune. She did some blood work, which was normal.

It took months before I was finally diagnosed with RSD. Before that they were looking at fibromyalgia and even MS for a while. I think that the RSD diagnosis fits me best from what I've read. The only thing that confuses me (and the Dr.s) is that my pain is so inconsistent. I always feel some pain but some days I can rate it as low as a 4 on a scale of 1-10. The next day it could shoot up to a 9 or 10 without warning and all of a sudden I'm bedridden again.

The fact that you have burning pain tells me that something is screwed up with your nerves. I would keep going to different Dr.'s until you can get a definite diagnosis. I had to see several before I was diagnosed with RSD.

HI LIZZNXXX

MY SYMTOMS ARE BURNING ALL OVER MY BODY. DO YOU HAVE THE BURNIG ALL OVER. DO YOU GET DIZZY..MY WHOLE BODY JERKS RELLY BAD LIKE IM GOING TO HAVE A SEIZURE. DO YOU FEEL LIKE THAT. WHAT DO YOU TAKE FOR YOU RSD. I HATE THIS FEELING AND I WANT IT STOP.

I have been suffering with mine for a little over a year now. I'm so sorry about you being housebound. I'm not so sure about what the normal symtoms of this whole thing are but I do know that it sucks. I have swelling, redness, temp changes, and lots of pain. I just have tenderness in one area but no hair or nail growth like my Dr thought I would have. I still have to do more research to get the full picture but if I see anything new I will let you know.

Hi Linzxx,

I was told several years ago that the symptoms will vary and be different between people. When I went to the Cleveland Clinic the head doctor told me that the old list of symptoms is not always accurate today and doing the standard tests to check for RSDS/CRPS do not always work. I have noticed that over the years my symptoms have changed.

I did have a temp difference between legs--but now that the disease has mirrored itself from one leg to the other this difference is not as noticeable. The same with the redness. However, when the original leg hurts more the temp and redness can be seen and felt.

I was sensitive to touch, but after doing exercises with different types of cloths by lightly rubbing them on my knees--this has subsided. I do get sensitivity issues but now when I have a flare up it is more with light and sound. Noise really bothers me and I feel like I am in a rock concert sitting in front of the speakers sometimes.

At times my feet feel like I am walking on glass shards or hot coals and it is hard to walk. My feet burn. When I take a shower, the water feels like small rocks landing on my feet.

My legs constantly have a pain that shoots through them. A dull ache, a burning. It is centered in my knee where I had my surgery that was botched by the first surgeon. I am at a level 4-5 almost every day and sad to say, I have gotten use to this pain--at least I tolerate it. On bad days it will go up to a 9-10 and then I have to go home from work and go to bed.

The RSDS in my body has spread to my arms. They will have an intense burning sensation on really bad days--like it is burning from the inside out.

My mood changes as my pain changes. I get very dark and people can see it. This is when my sensitivity starts to act up. I don't want to be touched, I just want to crawl into a hole and be left alone.

Because of the RSDS I cannot have my knees operated on. The doctors don't want to cut my skin and damage more nerves. So, I have to use a walker for the rest of my left. You see my knees give out and I fall. Lucky for me they don't give out together. Sometimes I can feel my knee give out before I fall and I can grab something to brace myself on. When it happens it is like putting your leg down on a floor of Jell-o. Then the pain comes really bad.

I try to keep myself active, but sometimes the pain gets worse. The doctors have told me to learn my limitations and not to push myself. When I have too much pain--then stop and rest.

Hang in there. I have learned to live for the good days and enjoy life as best as possible. I know there are things that I can't do, but there is still a lot that I can do. Keep positive--which is hard when you are in pain--but it is better for you in the long run.

All the best,

Russell

hey everyone. im Rachel im 18 and have had RSD for six years in my right arm and leg, besides the chronic pain, pins and needles, burning, stinging, shooting pain and muscle spasms. i hvae also had swelling, hot and cold skin, color changes (red white blue purple) uncontrolable twitching, fingernails turning yellow, and getting ridges on my fingernails,but the worse is hyper sensativity. i cant stand the rain, my clothes even the wind, everything hurts. also i have muscle weakness and joint stiffness.