RSD Any1 heard of it

Discussion in 'Fibromyalgia Main Forum' started by seeminglyconfused, Nov 14, 2006.

  1. seeminglyconfused

    seeminglyconfused New Member

    I am 35 & was told thats what i have after falling annd spraining my ankle the injury did not improve at the rate it should have pain medss nothing helped,the orthopedics,poditrist,couldnt figure it out it was just a bad sprain i was sent to neuroligist who confermed their theory of RSD but reading info on fibermyilsia i am wondering if the 2 are somehow related this injury happened almost 4 years ago and i still struggle to maintain a normal life i dont see a dr because i dont trust them they where trying to get me to believe i was going to remain lamed and end up using a cain they wanted me taking drugs that effected my consitration,and depressed me nerotion i think it was called had me taking 800mgs 3 times a day then my insurance witch by the way was medicade cancelled me so for the past 2yrs ive been tuffing it
  2. 143alan

    143alan New Member

    the doctor's classify his as RND, Reflex Neurovascular Dystrophy. When we got information on it all the papers had RSD/RND. They are one in the same condition, just depends on the terminology the doctor chooses.

    The sympathetic nervous system sends an amplified pain signal to the brain. If I get a paper cut on my finger it may sting and burn for a minute but the pain is not that bad. If my son gets a paper cut his pain is equivalent to him getting his whole finger cut off.

    Yes they do put RSD/RND in the same family with Fibromyalgia and other similar conditions. I have FM and we share some of the same symptoms such as sensitivity to light, sounds and smells. RSD/RND can occur after an injury, like yours or after an illness, like my son.

    Have you seen a rheumatologist? If not you may want to see one so that they can run some blood work on you. My son was first diagnosed with rheumatoid disease but they couldn't define which kind because the ANA numbers kept coming back strange.

    800 mg of Neurontin 3x a day is a LOT. Did they ease you into this or expect you to start out with this amount? That's one of those drugs you have to work your way up in dosage.

    I'm sorry you have this, I know it is VERY, VERY painful. FM which I have is painful but affects more certain areas of the body and trigger points. RSD/RND affects the entire nervous system at one time and is horribly painful. I'm in pain a lot of the time with FM but I can control a flare with medication better than my son when he has a flare. I don't know how to explain it but I'm sure having it, you know what I mean. Most of the time no amount of pain meds even affects the flare of RSD/RND. Also any kind of stress at all will send you in a flare quicker.

    I hope I've helped if in no other way than to let you know that I know what you have and someone else that has it, so you're not alone.
    Please Take Care!
    Nancy
  3. bozey

    bozey New Member

    I have RSD also. Reflex Symtomatic Dystrophy. I had carpal tunnel surgery(left hand) and it took 10 months before I was released to go back to work.

    Also, cold makes me hurt worse. I can only make about 3 hamburger patties and then I have to run warm water on my left hand because it hurts so bad.

    Also, my primary Dr. told me not to have any surgerys. And I am in no hurry to have any. I did have my gall bladder out last year but it was a must. Luckily I didn't have any side effects to that surgery.

    I have a pinched nerve in my left shoulder and golfers elbow on my right. Both need surgery but it ain't gonna happen. I just live with the pain.

    I looked up a RSD message board and some of those people have it really bad. I consider myself lucky.

    Same with CFS and FM, I don't have it as bad as some on here. Tho', CFS is kicking my butt lately.

    I don't know if you have looked up RSD on the puter but read up on it. Also, find a Dr. to treat you. 800 mg of nerotin seems like alot.

    Just wanted to let you know that you are not alone. I hope you find the help you need.

    bozey
  4. jvrealty

    jvrealty New Member

    Hello
    saw your post and i just had to respond. being a former claims adjuster, take it from me....a dx of RSD is very very serious and you will probably never heal from this. get yourself a good lawyer right now. don't delay.

    take care with gentle hugs.....

    jv
  5. 143alan

    143alan New Member

    Hello, I saw your response to this post and wanted to tell you that my son has a terrible time with cold also. Even getting a drink can out of the refrigerator is extremely painful for him.

    Also some things we learned through research since the Dr who was treating my son just told him he had to suffer.
    Chocolate and cheese make the pain worse. I've noticed that with FM it makes mine worse also when I'm in a flare.
    People with RSD/RND should NEVER put ice on an injury.
    We learned the hard way and is a little known fact but these patients should never have be casted if they break a bone. Being ultra sensitive to just about everything with this condition we learned that patients w/ this will almost always develop cellulitis in the limb with a cast on it.

    As I said we learned this one the hard way when my son broke his leg playing soccer and 3 days before his cast was to come off he complained that something was running down his leg and it felt like it was on fire. It got so bad and we couldn't get in touch with the ortho doc because it was a holiday weekend so I cut the cast off his leg myself and seeing the horrible condition his leg was in I rushed him to the ER. I was impressed that the ER doc actually knew what RND was and asked if this was a flare and I told him it wasn't. His leg was so infected it looked 10x worse than when it was broken and took 3x longer to heal the cellulitis as the break. It was terrible.

    At the time he was diagnosed I looked up all kinds of info on this and kept a folder of information. If you would like for me to share more just let me know.

    Take Care
    Nancy
  6. seeminglyconfused

    seeminglyconfused New Member

    I DONT KNOW WHAT A LAWYER COULD DO,ITs been almost 4yrs Im sure its been to long to even try to go after the home owner of whom which I fell,IT was also a rentel property,I do believe the ER should of helped me more tho,I was young and active and in an instant and of what should have just been 3 to 4 wks of inconvince has turned into a life change for me but it could be worse,honestly because Im unable to see a Dr cause I simply cant aford it being a single mom of 3,Ive started smoking marj.at the advise of a friend who has MS and it detors my thoughts because if Im really foucesed on something else I noticed it is mind over matter if Im siting around doing nothing is when the aches and burning is at its worse I guess I am lucky in some ways cause in labor with my 2nd child I learned how to meditate I guess you could say,and I still manage to hold a full time job although When I get home I can barely do anything else,I feel real bad for Bozys son.Sencerly Seeminglyconfused