Reflex Sympathetic Dystrophy (RSD)

[livingwith]

My name is Marney, 31yo from NJ. One month ago I had surgery for my P.F. I had 5 days where I had NO pain. After those 5 days(about 3 weeks after surgery), my foot swelled up and now the pain is constant and unbearable. My foot doctor said I need to go to a pain mgmt dr. He said “OH You probably have RSD I will call your family dr” and walked out of the room. My PCP thinks that my foot pain is related to my back. BUT I have never been diagnosed with any back problems. I am so confus...Read the full article

[plt405]

Hello just read you input on your RSD. I'm 47 and have RSD as well since 2002 when I had leg surgery (Right Leg). I have had 2 yrs of Nerve Blocks and 2 yrs of PT. Which was very painful when I first started. Now don't give up. Once you find your Pain Managment Doctor which is very important right now, cause the MRI is not going to do anything for you but have you throwing money out the window. You need to start with Pain Management, and PT. Also the med. that I take is used for people who have RSD it is Gabapentin 600MG, which I do take at night. This med. is also used for patients who have seizures. There are alot of Doctors out there who have no clue on what RSD is, they never even heard of it before. Just some of the things that I can't do to this day: Kneel, Climb, Sit Indian Style, Bend My Leg All The Way Back. But I am back to work which is only Part-Time but it gets me out of the house and out of my Husbands hair, and I'm driving one of the most hardest things for me to do cause I was using my left foot and not my right foot. But with time I started to use my right foot. Now keep in mind I'm not nor ever will be pain free, but I have learned how to deal with the pain and the med. I have helps me deal everyday of my life. Talk to your Doctor and see if he knows of a Pain Managment Doctor and if so go see him/her. And ask about PT and this med. that I take (Gabapentin). And the way RSD was explain to me was as follows: Our Nerves are like and extension cord and when they are disturbed they go hay wire and they are never repaired. People who have Arm, Leg or Heart Surgeries may or may not come down with RSD. It is a very complex disease. But with the Nerve Blocks and PT you can get somewhat of control back with your Nerves. And try to live somewhat of a normal life. If you have the right Doctors and PT's to help you along the path of recovery. So Please Don't Give Up, hang in there. I hope some of what I typed helps you in your road to recovery. My Prayers are with you. Best of Luck!

[Lilirishmom]

I read your story.... and felt like we were twins. I also have RSD in my left hand and arm. Im learning to live with the pain, but it is not an easy task from day to day, hour to hour. It has made me severely depressed. I also take Effexor 300 mg a day. It also cause me to sweat unbelievalely soaked every day... but helps with the deppression. i tried on several occasions to stop taking it but the deppression just overwhelms me. I also take 1600 mg of Gabapentin tabs aday. This was like a magic pill to me. I have taken several others also... but these two work the best for me. When i read about you sweating on top of all of this pain,,, i felt like you were talking about me. i dont even blow dry my hair anymore... or wear makeup. Life is not all that for me after living with this since a injury to my left hand in 2000. Finances are very hard now... been out of work for 3 years now. I do have a good day from time to time.... but mostly it just pain, burning, swelling and no strength. Im not going to tell you that there is a good life at the end of the rainbow... but pray someone finds something that will help all of us who suffer. My best treatment is acupucture.... it works. Have you heard the saying "mind over matter" it not only helps me mental deal with the pain but also helps my depression. I live in Maryland, and if you need a good doctor... write back to me. I will give you info. I pray some day we will have a life again... that is normal.

[Copper]

I feel like I just read my own story.I am 29 years old and was just diagnosed a few weeks ago.I know excactly how you feel.It is in my right foot and I cannpt walk with out my air cast on.I too take effexor for derpression along with opiates and I too have a serious time with swaeting.I thought it was just me.I sleep with the ac set at 67 degrees.Any warmer and I sweat profusely.I always need the ac on in the car or anywhere I go.I annoy my sister with how hot I am,she's always saying she's cold when my head and hair are drenched with sweat.I wake up in the night with horrible night sweats,the other night I woke up and just my legs were soaked,nothing else just my legs.Thank goodness no one is sleeping in my bed because hey would probablly think I'm crazy.Now the rsd is spreading into my left hand.I have a brace on my right foot and a brace on my left hand.I look rahter silly.The pain is overwhelming at time and sometimes it hurtsd so bad I don't knwowhat to do but cry.I don't sleep well becasue every time my foot moves it causes severe pain and I wake up.I'm holdiong on to the fact there is a light at the end of the tunnel.But sometimes that is even too hard to do.I guess I find solice in the fact that I am no longer alone with this disease and there are people out there just like me and know how it feels.

[Meandrsd]

Hello No where to turn, I was reading your story and I saw that you live in Maryland, and so do I and I was just recently diagonosed with RSD after nine months of nothing but pain, and everybody thought I was crazy including the doctor I was seeing, I have it in my right foot, started as an ankle injury, and I believe it is spreading at this time, have been doing the nerve blocks so far six but really no sucess, so now the doctor is thinking of spinal cord stimulator, but I will wait and see if he will give me the final word for it, but this is really scary this entire situation, and all I do is cry, and I am extremely depressed all the time, my husband is really starting to understand the seriouness of the disease.

[Lilirishmom]

i read your repsonse to .... No where to turn. You mention that "no where to turn" was from Maryland... she is not the one from Maryland .... i am.... lol. You must of read my response to her article... now i read your response... and understand what you are going thru. I see a Neroligist here in Baltimore. The Dr. name is Dr Margret Bleecker... she is located off of Falls road. She is the best! She understands alot about what people with RSD go thru..... She also has a woman who does acupucture in her office... and this has made my life more bearable. Dont get me wrong i am still in pain. But when i go for treatments... it makes me feel more in control of this desease instead of this desease controlling me. I hope this info is helpful.... dont go thru any other proceedures untill you get a second opinion. i just care about you and your health... i hope that "no where to turn" doesnt mind me telling you this... i have responded to her article and still need to reply back to her maybe tonite when i get a chance... because it hurts to type alot... so i can only do a little at a time.
Thinking of all people who have this desease,
Lilirishmom

[Meandrsd]

Hello I am sorry I got that wrong, yes I see a doctor also in Baltimore at the pain center, he is a good doctor but also the first pain doctor I have seen, I was referred to him by a foot and ankle doctor from Med Mercy, whom knew exactly what I had when he first saw me, so far I have gone through five nerve blocks, and my sixth one tomorrow, I do not really see any improvement with the blocks, and I am just afraid of other treatments, this whole situation is very scary, but I know that God has me every step of the way. It took nine months before I actually got to someone whom knew what was going on, the other doctors had no clue, so I suffered all of that pain all those months, but at least I am on the right track now for getting treatment.