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

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!

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

Hi Sheri,

Welcome! What kind of treatment have you been getting so far? It's great you're being so proactive in getting info! Good for you!

Denise

Hi - One of the worst things I have found with RSD is the non-support of medical professionals. It took 6 years for me to be diagnosed, test after test, attitude after attitude and finally confirmation. It started in my left hand/arm and face then moved to my right arm/hand. Both hands are effected now so I don't type long. But still, I am on 3 waiting lists for Ketamine (Any-one know a doctor?), one doctor will see me for 15k but he is far away and my current doctors say there is nothing they can do for me. Pain meds that barely touch the surface, no support and still a lot of attitude. Talk with people, search for help and reach out that is all we can do! Unfortunately, I have found that we must find answers ourselves. Don't give up! I made up a saying long ago that I think all doctors should adhere to...."For a man/woman to truly see, they must look beyond their own ego":icon_wink:

Hello, I know exactly what you are talking about. It is my husband that suffers from rsd but we went through approximatly 15 doctors before getting any real help. He was accused of everything from laziness to wanting drugs. Many doctors would have him in hospital give him drugs to heavily sedate and try to ask him questions when he was in a fog. We have found help and I see you are in PA. There is a Dr. Mary Torchi associated with Pain med pc and has office in Greensburg and Pittsburgh. She also sent us to a therapist who now is in Greensbug named Jerry Felton. We think very highly of both of these people. Not that it has been easy but they are compassionate and realize not everyone with this responds the same to treatment.

On a reply to one of my threads, SBOWLING said that they went to Dr Schwartzman in Philly who is a RSD specialist. Don't know if that helps you, but there ya go. Take are and keep your chin up; we're here for you.

Hi, My daughter is seeing Dr. Kirkpatrick in Tampa Florida, I got an appointment right away within a week and Ketamine infusions with in two weeks. The cost was $7500.00. He is the RSD Research Institute. RSD Foundation. They are located on Busch Blvd. Tampa, Florida.



Good luck to you,

When you say waiting three years for Ketamine? Do you mean Ketamine pills or infusion?

I've had an infusion in Boston MA, Newton Wellesley Hospital, amazing doctor. Dr. Paul Satwicz. Saved my life. Finally diagnosised my RSD and really cared.
Also, compounding pharmacy can make oral ketamine, (either didn't help)

Have you tried oxygen chamber? Heard good things also spinal cord stimulator? LOVE MINE. but only does my left arm and now it's spread. They have a neuro stimulator?

Feel your pain and frustration. The medical community does not have a clue and if your body looked like it felt I think you'd get much more attention and willingness to do something. My arm look like an arm but feels cut open and on fire.

No one gets it but others with the same thing
Good Luck

For me 18yrs ago. I went to so many doctors and they kept saying it must be in your head even though you could see my right hand looked completely different. I finally got diagnosed a little to late and not before a different Dr. had put it in a cast. I am with you. Don't stop even if you have to go Dr. to Dr. You are the only one that knows your own body. I am on Medicare now so it takes longer for authorizations and certain things are not covered. LISAR624

I was diagnosed with rsd three months ago. I have had no contact with others who suffer from this disease. I would like to know more about this disease and what I should do from here.

Hi everyone. I was diagnosed with "it" 14 months ago but I am one of the fortunate ones . I started Nerve blocks right away and other than, burning, aching, stabbing pain and a little muscle waist, (oops it`s in my right arm from shoulder down,) I am still able to flip the "bird" to bad drivers! The pain does get pretty severe alot but looking at me, other than the goofy look I have on my face, you wouldn`t know I have it! I hide it pretty well but I can. I hope I made some of you laugh a little because this disease brings so much sadness to so many people! My love and support goes out to all of you and I hope if you want to talk I am here. I will need to talk to you guys too. It is just great to be able to "talk" to people who "know". Believe me I have had my times and have lots of fear but I try to keep some humor in life because some days it may be the ONLY thing that gets you through! I won1`t go into the long story of how I got it just now but I just wanted to say hi everyone. I hope sometimes I can make you smile.