Please take a moment to introduce yourself to the community. Everyone here has something to share about Reflex Sympathetic Dystrophy Syndrome. For the discussion boards, we ask that you keep your full name and location private.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
Founder of the TransGlobal Health Community Center at http://transglobalhealth.com
I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat
My name is Patricia i live in Maine. I have had rsd for 10years in my left foot and leg spreading up my other leg due to surgery on my foot. This disease has totally ruined my life. I had to stop working, my income has dropped i am on ssd. The pain and burning is unbelievable sometimes cant deal with it. Cant do things i used to like get down aon floor and play with my grandchildren. Oh by the way i am 55yrs old and i have 5 grown children and 12 grandchildren. They are waht keeps me going.
Hi my name is Kitty, I live in Southern California, I have had RSD since 2002.
It is located throughout my whole left side of my body, and it the right foot and calf.
I an interested in this condition because I was diagnosed with RSD in '03 (so 4 yrs now). I have a fight not with just the condition, but with Workers Comp. So, right now, the more people I can connect with that have this condition, the better.
I contracted this after a surgery for my back and still have people thinking it is all in my head and family members who don’t understand the condition. I find myself with no one to talk to about it and all th dr. wants to do is throw narcotics to me and send me out the door. Will they ever make this plain to poeple so they can understand it is not in our heads ? If they had to live with our pain for just one minute I’m sure it would become very clear.
I am sorry to say that I don’t have much time at the moment - so - in a nutshell - I’ve had RSD for over 8 years, now (it has spread globally) and I am interested in everything to do with RSD - especially the opportunity to meet others with my disorder (as I find it so very difficult for the “outside word” to understand just how much it impacts our daily lives!). Thanks for listening
I live in Florida, unfortunately the rainy season is the worst time of the year. All of the pressure changes. I am 26 yrs old and was diagnosed with RSD in '02. I really can’t believe it has been 5 years already. Well I can its been forever and a flash. I am very fortunate that I am not a workers comp case. I have heard so many stories of the dificulties that so many of you go through with workers comp. And I am thankful that I have a great pain management doctor. I try really hard to stay positive through all of this. I do have my bad days though. Gotta run,
My name is Zuzel and am 46 years old. I fell 5 yeas ago at a hotel, there was a hole in the floor under the carpet, which I could not have seen. I have multi level disc herniations in the cervical and thoraci area of spine. I had incredible pain in my left knee and left ankle. I went to my prmiary doc one week after may fall and complained of the worst pain that I was having at that time, which was my left ankle. Dr. said it was a bad sprain, complained every week thereafter until 3 months later. I accompained my mother to her nuerologist appt. who has been her doc for may years,she has vertigo. He saw me limping and said that my ankle could not still be that bad as a result of only a sprain. He have me prescription for x-ray, two days later I was called by my mom’s neuro and told that I have a non displaced fractureof the( medial maleous) sorry about spelling. and 5 years later I have had epidural blocks at cervical and thoracic area by my pain management doctor who is the best. I just had surgery of the left knee, my ortho advised that the MRI apparently did not show all damage to the knee and he repaired tears and other things now shown on MRI. PROBLEM: of course I filed a law suit against the hotel and their lawyers said that the Radiologist they hired to review the x-ray said my ankle as not fractured. OK so now I have extreme burning pain at site of supposed non fracture in ankle, purple discoloration around the site and over other areas of ankle, don’t know how to describe this, but the skin surrounding my ankle and the back of my foot is enlarged and swollen all the way around, looks disfigured, my tod nails are growing very fast and horrible looking (very thick and in different directions) the burning is excruciating. The latest MRI of the ankle 5 years after incident shows increased edema and swelling and inflammation. I can’t take the pain and burning anymore, PLEASE TELL ME HOW I CAN GET RELIEF. I am already taking Morphone Sulphate 200 mg x3 a day; Zanaflex .3 aday, gabitril x3 a day; Lidoderm patches x 3 aday; tylenol No. 3 x3 a day; xanax .5 x3 a day; Paxil and I can’t remember the others. Begging for someone’s help I want my ankle amputated, this is how bad I feel…
I am interested because I have been living with CRPS/RSD for over 2 years. I like to hear about new research and studies that are being done. I also like to hear inspirational stories. I am looking to connect with people who understand but do more than just focus on disease.
Hi- I am a forty yr old female. Have degenerative disk disease, had lumbar spinal fusion in 2004 and recently ( 2months ago) was diagnosis with RSD. I have been through pt, steroid injections, had dicography, lumbar traction all in 2002-2005. Orthopediac doc wanted to perform another surgery on lumbar spine right above old surgery site. I refused. My pain is through the roof. I have taken oxycodone, dilaudid, fentanyl patch, lidocaine patch. Still on meds, but nothind helps the pain. Having sleepless nights, or should I say interurpted sleep, with increased pain. Difficulty walking, standing and sitting. My arms and ahnds turn red as if i have a sunburn, my legs and feet turn reddish blue and i have noticed a change in the appearance of my toenails. I see a new pain management clinic provider on tuesday. Can anyone tell me what to expect, considering I have done everything for the degenerative disk disorder that I understand would be the treatment for RSD. I also have fibromyalgia. Any help would be appreciated.
Hi , I am Toni, I am 42 ,married with 4 teenagers ages 18,18,16,and 14.We live in a small rural area in upstate New York, over by lake ontario .I have had RSD since 1995 when I was badly injured my left shoulder at work. Long story short, after 4 shoulder surgeries I am now left with degenerating arthritis in my shoulder and the RSD monster has set up house and decided to spread the the entire left side of my body.
I am intrested in groups like this one to enable me to speak with others whom actually understand what RSD is .(heck my regular family doctor has no idea what it is ugh!) I am looking for the support, knowlage, experience found in numbers. A place that we might come and find a comfort .
I was diagonosed with Rsd
I have RSD and I am very tired of the pain and no longer having a life or any hope of ever getting better!
I have had RSD for 10 years. I was “blessed” with this horrible condition after hand surgery. I’ve had ganglion blocks without relief. I take oxycontin & other meds that don’t relieve it all the time. Now I’ve had surgery for a torn rotator cuff & my RSD is flared up horribly. I’m so tired of constant pain. I am an RN, unable to work. Widowed 3 yrs ago. Trying to live on social security. Yes, I have depression & feel pretty hopeless at times. I have a close friend whom I talk to, but it doesn’t seem to help anymore. I am a Christian believer & prayer seems to help more than anything. Losing my husband, having breast cancer, bankruptcy, having to sell my home, 2 mini-strokes left me with memory loss, 2 other surgeries have left me depleted! Sorry for whining. There are so many others with worse problems than mine!
My name is Lucinda and I was diagnosed with RSD in the upper left extremity a few months after I had a stroke in 1994. Thanks to an incredible OT, I was finally diagnosed. Diagnosis was a very long process, which doesn’t help the “you must attact this immediately rationale.” Thankfully, a neurosurgeon knew of a thoracic surgeon who had perfected a sympathectomy procedure that was minimally invasive. I have to say it saved my sanity. It never cured me, but the swelling and redness subsided (I always described it as carrying around a 5 lb. sack of potatoes 24/7. Today, I still have the oddball fingernails, atrophy, weird skin and bone pain in my hand. My doctor recently suggested Cymbalta to see if it just might help with the nerve pain. He said Cymbalta was recently OK’d for Diabetic Neuropathy and we all know the depression associated with RSD. It took a few months, but I have to say it has definitely helped the discomfort in my hand and arm. My husband can even touch it without me cringing. I’m not going to recommend it to anyone, but you might talk to your doctor.
I know the misery I have gone through, but I can live without a usuable hand; my heart goes out to everyone with this thing, especially those with full body and lower extremities, as that appears to be a lot worse than my struggle. Blessings to all and never give up the fight!
learn more about rsd, and what works
My 16 year old daughter has RSD. I want to learn all that I can about this. She has had it for 4 years. Connect with anyone who has anything to say on the subject.