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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hello all...I recently was diagnosed with RSD. They said I am in stage 3. I've broke my cervical area 2 seperate times and have had a total of 5 fusions, lampedectomy, 4 rods and screws placed in from my C3-C7.
I've had RSD since 2011 but always thought it was issues from my neck and was needing a new surgery. I've had to have a new surgery every 2-3 years.I'm overwhelmed and scared.
Can anyone direct me to any good sites online to educate myself about what RSD is? My doctor said it's important to treat this aggressively and had me start taking clonedine. I didn't have a good reaction to this medicine. I was on it for 6 days. I had horrible headaches and hallucinations. They told me to stop taking it immediately. It's been 4 days off the meds. I finally am not losing time but I still feel incredibly tired. I am on muscle relaxers and pain meds as well. It took me years to find the correct combination of medicine to deal with what was going on pre-RSD. And I'm not happy having to figure out what will work in order to get RSD under control.
There are a lot of different treatments and was just wonering if anyone had any advice as to what did and didn't work for them? I've read about HBOT, but it's very expensive. I've read about Ketimine trials and haven't talked to anyone that has that. I have been on neurontin, prednisone! And have a nerve blocks. All didn't work. I was an athlete starting as a child and played up until college. I try to work out regularly but lately because of the pain I haven't been able to continue my regiment the last 2 weeks.
I recently moved from NEPA to North Carolina hoping the warmer weather would help me out, which seems to help a little more in the sense that I'm able to continue to work out more instead of hiberanting for an entire winter.
In 2011 my left hand would swell in the mornings and have terrible pain. In 2012 they placed 4 rods at my C6-C7 due to fracturing my fusion I had in 2010. They also did a laminectomy to create more space in my c6-c7 area. My left hand stopped swelling but within a year after surgery my right hand started having he same issues. I'm right handed so this really affects me. My hand swells 3 times the normal size, it's so painful and the swelling usually doesn't go down until half way throughout the day. Sometimes it doesn't go away at all. It's usally very hot or cold to touch. And my skin looks waxy and shiny.
I'm 36 and have been dealing with neck issues for 25 years. I've never let my disability define me but within the last year it's really taking a toll on me mentally and physically. I try not to be depressed but when it starts affecting my everyday quality of life it's hard not to keep that positive attitude. It takes so much energy for me to act normal. I've become very good at hiding my pain from others but on the inside it's really tearing me up.
Does anyone have any advice? I recently had MRI's, CScans and x-Rays thinking I needed another surgery. But everything is okay in my neck. I usually go to Johns Hopkins for my cervical surgeries but because I just moved I wanted to see if I could find local doctors where I live now. They were the ones who diagnosed me with RSD. The more I read about it the more I realize that I do have it. Appreciate any advice. Thank you.

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