...can't we edit posts?

Anyway, whatever is wrong with me, it bloody hurts.

Anyone else think the diagnostic criteria are a bit too inclusive?

just a note:

you can edit posts, but there is a 24 hr window allowed. Past 24 hrs, the option closes.

My story so far
 

Hi all, my name is Maree, i was working as a personal carer, when i was hurt by a woman who has demtia.

My left forearm has not recovered, this happend in Dec 08, so nearly 2 years ago. I was bought up to be strong, so i soldiered on , no matter how bad the pain was, continued to go to work , right up until the 23 Dec 08, walking around like a wounded bird, with my arm held up to my chest.

I finally got to the Dr, who put me on compo, i was off work for three months, had physio, accupuncture, exrays and ultra sounds done, these did not show anything, even though i have a lump on underside of my forearm, the treatment only made the pain worse.

I carried on for 12 moths, with the pain, having good days and bad, then in Jan , i hurt my arm again, this time it's a lot worse. I have been to several surgeons, who treated me like im a bung on, and i think this is partly because when they ask about the symptoms, there is so many , i end up not saying much for fear they think im not telling the truth, anyway, i have had an mri done, as well as xrays, and guess what, nothing showed up.

Only one specialist said he would not rule out CRPS, and said i must be going out of my mind, him and my own Dr are the only 2 who have taken me seriously.

I am seeing a phsycologist for depression, not only is it caused from the pain, but also from the disbeleife i have been bombarded with, from my manager, some co workers, and Dr's.

There needs to be more awareness about this ondition, its not fair we have to go through this sort of thing, the pain and the debilitating effects of this condition is enough for anyone to have to bear.

I have not worked since Jan , i cant drive my car much, i have only driven 5 times since Jan, my manager made it quite clear she did not think there is anything wrong with me, told me there would be no light duties, if i came back to work. The pain has prevented this from happening, and even it didnt, i would not be working there anyway.

I am on Valpro to help manage the pain, they tried me on LYRICA, and another drug, but neither of these agreed with me, i also have strong pain killers, but as you would all know, pain killers dont really do much. I am blessed with a wonderful hubby, and great kids, and good friends, and these sites, where i can talk about this , and wont be thought of as an idiot.

Cheers, Maree

New & looking for doctor in my area
 

My name is Shelly
I was involved in an auto accident/roll over on the interstate freeway in mid May. As a result I have now been diagnosed with RSD in my left hand.

I was wondering if anyone knew of a good neurologist in the Tacoma/Seattle area who specializes in CRPS/RSD. I been blessed with pretty good doctors so far (was diagnosed within 2 months) but as I educate myself about this disease I now feel I need a neurologist who can help me with the next steps.

I was thinking of the UW (had sinus surgery earlier this year w/good results) I can call that doctor and ask him if he knows anyone. I thought I would try here first as I am hanging on to everyones coat tails. I have never been down this road before, and I keep stumbling.

Thanks in advance for any help

My story
 

I was recently diagnosed with RSD/CRPS even though I might have had it for 6+ years.

When I was 17, I fell and dislocated my right knee. From then on my life has been a living hell of pain and doctors just telling me that is was in my head. I also noticed this large (growing) bump on my right foot that would swell up and hurt every time I walked. Of course they did x-rays and told me I had a bad case of a bunion. They told me when I was close to my mid 20s I could get it removed.

Now I am 23 years old, that bump was actually a broken sesamoid bone that was fractured in 4 places. I lost all feeling in my right foot due to the pain never being treated. I had surgery to remove the now dead bone and still have severe pain in my right foot and lower leg. That was when the doctor finally diagnosed me with RSD. Pretty much I wouldn't have RSD if some dumb doctor could have read an x-ray right, but who knows.

My RSD has spread to my leg and right now it has stopped at my knee. I can barely walk because the pain is so severe. And rely on others to drive me around. I normally use a wheelchair when the distance is more than 10 steps.

I have been looking for a support group for numerous reasons in the san diego area and have found none. So I am hoping this site might help me with all the questions i have.

So far my treatment is:

Lumbar injections every 2 weeks
Acupuncturist 2 days a week
Physical therapist 2 days a week
Physcologist once a week
marriage councelor 3 times a week
pain meds (percocet) every 2 hours.

So far the pain has yet to be decreased. :mad:

Skj
 

Hi, My name is Mary. My husband was dx with RSD/CRPS august 2009. He was waxy skin (although his color is "dusky" ), long, yellow curvy nails, long black hair on his arm, and edema in both legs. His RSD appeared after surgery, in his left arm, and it has moved into his chest and back and starting on the right side. We are currently trying to connect the edema to the RSD. We lnow it is connected, we just have to convince comp. Good luck to you!:grouphug:

Better late then never, sort of
 

Well, after years on this site in the spinal surgery forums, I finally find myself here. I had my first ACDF on two levels in 2005, followed by a posterior fusion in 2008, lumbar laminectomy and then hardware remove from the cervical region in 2009.

I frequented this site as my pain continued all these years and seemed to worsen despite my surgeries. In addition, I had my gallbladder and a basal cell removed this past December.

After trying countless medications & procedures, I finally met with some excellent Dr's in NY and was told I had severe CRPS and they were shocked that no Dr I'd ever met with over the years had ever suggested it.

While still a bit in shock over the diagnosis, I have my 5 day infusion treatment scheduled for November and am pretty much scared to death but trying to keep going and keep smiling (not so easy most days). I've been to the ER 4 times in the past 5 wks and am praying ketamine can bring some relief.

I see alot of stories of strength and courage here and it does give me hope.

Hope to get to know you all better,
Dawn:)

Frogga --- I dont know when you posted your story but it was the most disheartening thing I have ever read. I cannot believe the torturous pain you must be enduring! I am so sorry for what you are going through. It sounds like you have the worst case of RSD/CRPS that I have ever heard about! But I am so impressed with your positive attitude. It makes me feel like I have no problems at all compared to what you must be enduring every single minute... I am truly sorry about what you have to go through! But you have a great attitude. And you are strong! You are an inspiration to me. You had the courage and strength to continue living, going to school, making friends and it is so encouraging.
Hang in there! I hope you continue to get better.
Hugs!
Lauri

Hello
 

I've been reading through the posts and already have found much inspiration here.

My story is not as painful as most, yet more painful than I wish to admit too. About 8 years ago I suffered pain, redness, burning and swelling in my lower left leg and foot. I don't remember having any injury during that time so went to my doctor who sent me to a vascular doc who did some tests and diagnosed me with primary lymphodema. I was told there was "nothing that could be done" and to wear support hose, elevate legs, take meds for swelling and basically live with it. I found a therapist who specialized in lymphodema and with the help of lymph massage and wrapping helped to get my leg swelling down but he wasn't convinced that I had lymphodema. Ok, I know this forum is about RSD but bear with me :o

Four years ago, I woke up with a sudden pain in my left shoulder. For the next few days the pain persisted and I did what I guess most would, I favored the arm and shoulder and protected it. After a couple of weeks I could no longer raise my arm and the pain was worse. I was diagnosed with frozen shoulder. I had tons of pt and two surgeries to manipulate the shoulder (one with some repair work) but I formed scar tissue easily and kept ending back up at square one. Plus the pain never went away. I switched doctors and after another surgery to repair and manipulate and yet another physical therapist, after a few months I did gain motion back and less pain (total time was over two years, two doctors and three therapists) I do not have full range of motion and I do still have some pain but finally that got better. Ok, I still know this forum is about RSD but hang in there! :o

Two years ago I was diagnosed with cubital tunnel syndrome in my left hand and shortly after that I had a nerve transposition which helped to clear up the pain in my hand and remove 99% of the numbness in my fingers. I know...still nothing about RSD.....

In January of this year I took a hard fall down a flight of steps. I injured my right wrist and both thighs had multiple contusions. I still have a hematoma on my right thigh along with three nasty little scars and some pain there. I was soooo thankful that the xray showed no fracture and figured in a couple of weeks I'd be good as new. That wasn't to be the case though :( After a couple of months the therapist was the first to mention RSD to me. The swelling was going down slowly and movement was "frozen". My wrist and knuckles were like stone and didn't want to move. My doctor confirmed I had RSD (two doctors actually as one was my ortho (the last frozen shoulder doc above) and the hand doc (that did my nerve transposition). I've been on Lyrica and Voltaren as well as some other meds for pain and vitamins for the past 8 months. Shortly after my fall, about a month, I also developed frozen shoulder on the right side which had made my movement very limited with that arm. The swelling is under control now, I still have some minor swelling at times in my hand area and although movement has improved I still have limited motion in the shoulder, wrist and knuckles. I just completed a serious of three stellate ganglion nerve blocks which seem to have helped a small amount. I still have pain but the colorization is better.

I have had continuing problems with my left leg and ankle with turning red and burning and swelling. I mentioned to the therapist that I thought perhaps I did not have lymphodema and thought perhaps that had been my first sign of RSD. She said that RSD is usually from surgery or some injury so she didn't think so. I talked to my primary care doctor (not the same one that treated me for the legs before) about the swelling and he said he thinks I have veinous insufficiency. An ultrasound came back as normal. After reading posts here I'm more than ever feeling that my leg also has been affected by RSD and I plan to discuss that with my ortho doc next visit to see what he thinks. I noticed from some posts that frozen shoulders and cubital tunnel, nerve issues were mention which is why I mentioned mine as well.

My worse problem is that I hate to complain so when asked how I am by family, docs and therapist I tend to always say "okay". I've been trying to work on that but it's hard to express how the pain feels and if I'm not in any severe pain at the time then to me I AM "ok" at that moment.

Well, sorry for the long post but it felt good to just say all of that to someone. I wish you all the best and look forward to chatting.

Take care,
Kathy

RSD maybe
 

Hello All
I would like some info from the people who really know, those who have it. It has been suggested that I might have RSD. It all started with knee surgery, then a second surgery. After the second surgery PT suggested to the DX that they thought I might, then it seemed to go away. I would have flare ups every now and then. When I say flare up I mean the pain increases as does the swelling. Then about a month ago I had burning pain up the back of my leg. But after a few weeks it lessoned to just once in a while. I also have a knee that will not go straight and no one knows why. Sometimes my calf feels tight and stiff. I also get something that feels like electric shocks. I also have weakness in my thigh, can't lift my left knee like I can my right. My new DX said I might have RSD tend. What I would like to know is does it sound like I have it, after reading some other post I don't have it so bad.What I want to know is does it start out mild? Is there any way to find out for sure? I would like to also add my second surgery was 1/13/2010, and I'm stillnot back to normal. And if you look at X-rays of both knees my good knee looks as though it should be the bad one. Has new DX puzzled. ANY ANSWERS. Please Help