Hi all,
I have had RSD for 10 years. Had minor knee surgery and BAM - RSD in the left knee, then leg, then onto the right knee and leg. I was out of work for 3 years...cou;ldnt walk, drive or anything else. Had to undergo PT to prepare for surgeries to rebuild both legs as everything had atrophied from the RSD. in 00 went back to work and have had flare ups since, usually managed by meds but when it gets real bad i get the blocks. had a block on 12/24 (merry christmas to me ) and will be having another on 1/22....thought I'd see what folks on line had to say and what they thought and felt about RSD....

For me, I make the most of what I have everyday and go to PT in the pool 2-3 times a week after work to keep my legs moving....taking cymbalta for the first time for the RSD....just increased from 30 to 60 and the sweats are slowly starting to subside. Have bumps on tongue from the dry mouth but hope they will go away soom....tried Lyrica - side effects were too much...used to take dylantin, baclofen and flexerill but had to change meds because my body got too used to them.
So thats my story - I am always interested in hearing others and would be happy to answer any questions folks new to this disorder may have....I have always considered myslef pretty lucky as my neurologist also has RSD so he can always relate to what I have to say and how I feel.
In good health to all,
Lisa

Hi JennyK38,

Hi Jennifer, So Sorry to hear about your injury at work and having RSD now. I had breast surgery, both tumors benign, but also got frozen shoulder following the surgery. My arm swelled up, followed by the frozen shoulder. It probably took 100 physical therapy treatments plus massage therapy to get full range of motion. Ortho Dr. wanted to operate, but said no. Shortly later, it moved to the oppposite shoulder and froze. Not so many treatments, got an earlier start. About 5 years from the surgery, was water skiing and pulled nerve in the left hand. Was misdiagnosed with arthritis and bad pain. Finally diagnosed with RSD and back to therapy. Left hand is permanent claw, Then right hand rsd then both feet and legs. full body plus trigeminal nerve pain and half my face. I have finally found a wonderful Dr. Have switched from neurotin (3200 mg to Lyrica 400 mg. The Lyrica is much better for me and lessens the nerve pain. Am on Ambien Cr for sleep. The Lorazepam helps with anxiety and two different blood pressure meds and two different anti-depressants that help with nerve pain. I used to have the electrical jolts bad and spasms. High blood pressure and then sudden drops. This disorder really affects so much of your life, memory, depression, sleep deprivation, energy level,the pain is unbearable . I had a tens unit too Jenny, Swimming is one of the best things that help me. I hate the weight gain from the meds, and the
exhausation from the meds and depression. I'm afraid to try to scale down, because I had a bad drop in pressure and passed out for over an hour. B/P
was 60/40 4 days in icu. I was able to drop down two vicodin a day because the Lyrica was more effective for me than neurotin. This forum and helped me too with the isolation and missing so much my old active life. It is a real adjustment in life and missing all the things we used to do. I try and be grateful for what things I have now, a husband that does so much-shopping, drug store, housework. etc. Our daughter is married-7 years now and just moved to Chicago. Life is full of change isn't it. I'm 59 and guess this has been with me for maybe 14 years. I have a good friend here in AZ with full body RSD from car accident. Jennifer, are you on SSDI, I read somewhere, it's easier to get now. If I every try, Ii'll use an attorney. Jennifer, hand in there, there is a lot of understanding and knowledge on this forum. Lots of encouragement, I'm trying to exercise more and loose weight. It's really hard emotionally to gain so much weight and not really have the energy to work out. I'm starting out slow and adding a minute or so a day.Please know we are all here for you. Sincerely, loretta jewell

Hi all My name is Jo i was diagnosed with rsd in may of 2007. I started with a stress fracture that healed and the rsd set in. I had a breakdown with the diagnosis of this, but am much better. I am on cymbalta, and kepra for the nerve pain. I am without pain meds trying to this without .. In the process of finding a new pm one that doesnt have assistants in every corner lol. I had one lumbar block in august. I have five children ages 20,19,13,11, 6.. So far its been a long haul but we are managing much better. Hope to meet you all.

JoJo

My name is Stephanie. I was recently diagnosed with RDS, but I am in denial.
I was in a car accident in November. I was going straight through an interesection and the other driver turned left in front of me. He was unlicensed, uninsured and undocumented. Unfortunately, I only had a $15k uninsured motorist policy. My left arm was injured somehow in the accident. I dont remember what exactly happened to my arm, but it turns out that I only sustained soft tissue damage. My left hand has become increasingly more painful. It goes from extreme hot to extreme cold. On bad days, it turns a lovely shade of purple. It is constantly swollen and hurts all the time. I am seeing a neurologist and have been throught physical therapy. I am currently on Gabapentin, Naprosyn and Percocet. I keep thinking it is going to clear up on its own. I keep thinking i will wake up one day and it will be better. I struggle with accepting that RSD is the real problem. The neuro has ordered an MRI to find out if there is damage in my neck/spine. My neuro does not seem to be in any kind of hurry to help with the pain. In fact, he isnt even the one who prescribed the Percocet. I had to get that from my PCP. I guess I am just looking for some answers and explanations. Hopefully, I will find both here.

I have to say thanks for your story. I was trying to find people whom has had the burning pain travel through other parts of the body. I have a lawsuit going because of an accident that caused my rsd. It started in my feet and achilles tendon's. 5-6 months later I also had severe burning pain in the back of my calf, thigh and my butt burns as well. I can't sit for very long, stand or walk. I actually lay in bed all day. I have to find a way to prove that rsd can spread. Just sitting here typing causes to much pain.

Thanks again
Heather

Here is an article that you might be interested in...

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=79

Sorry to hear that you have RSD also. My thoughts and prayers are with you!


Heather

I'm sure you've heard this before...but I have to tell you I am impressed by your tenacity. I feel for you and I will keep you in my prayers. I just found out my son (21) has rsd. It is very hard watching him change. You give me hope and I wish you the best. How is your mom?

I feel for you. I am ashamed to admit that at first I worried that my son liked the meds a little too much. I DID NOT understand. I apologize to all of you out there who have your loved ones questioning your issues. My son is just 21 and I think I was in denial "Not my BABY!!!"
Well I hope the medical profession catches up soon, because this is so real, so important, so life changing and frankly...I'm mad.
Please excuse me for venting a little...this darned thing (rsd) makes you feel alone. Does any one know how to find people who suffer with this in their area? I live in Sterling CO, (NE Colorado)

Hi. My name is Melissa and I was diagnosed with what my ortho called "mild" RSD about 7 months ago. I fell and had a tiny fracture on my fibula at the spot where the nerve wraps around the bone. I was put in a walking boot and told to do "light duty" at work. About a week later I went to the ER because I couldn't feel my foot and my aunt (an RN) couldn't find a pulse. The attending mentioned a possibility that I could have RSD and that I should ask my ortho to look into the possibility. My ortho blew me off saying it was way too early to consider RSD. A month later I was still having burning pain and now I couldn't feel my two outer toes at all. He then conceded to treating the RSD with PT, but no meds. To this day the only serious pain med I have taken was the 2 week supply of Vicodin I got at the ER when I broke my leg! I have my good days when my only issues are the numb toes and the hairy legs (when I can actually handle the burn of shaving my leg, I cut myself too much and don't realize it... So I don't bother most of the time), and then I have my bad days when I feel like my leg is being dipped in molten lava and then rolled in thorns. I guess I was lucky that it was diagnosed so quickly, but I didn't get any real information on it. No one told me it could spread. No one told me it could worsen over time. The more I read the more terrified I become and that horrible sense of hopelessness creeps over me. Because of my uninformed state, I signed a settlement with the insurance company that released them from any further liability. I was off work for 3 months and I was so desparate to pay bills, and my PT and ortho both told me I was fine. Now I'm not sure what I'll do. I can't afford to see a doctor and even if I got insurance, it wouldn't cover a "pre-existing condition".

for those of you who do not know me I have had rsd since Feb, 1995. I was lucky they caught it early and it has not spread alot. My story (be warned it's graphic) is on my website click the link under my siggy. I am sorry so many suffered from rsd and hope one day like one of my docs used to say, "they'll find the little buggerthat causes rsd in the brain and zap it! And pain will be no more." Wouldn't that be great.