I am so sorry to hear of your treatment by the physicians and nursing staff. I think ignorance is probably key here. So, you must advocate for yourself in a big way. From the sounds of your posts....I'm sure you can.
I was diagnosed early on as well. My injury was in July 1989 and I was diagnosed in August 1989, but.... Also, my brother is an ER doc, who has worked at Lake Forest in Chicago where they treat a lot of athletes and he also diagnosed me. Still, I was subjected to treatments that did not benefit me through out the years, such as Upper Thorasic Radio Frequency Sympatectomy, surgery, 3 series of 10 blocks, PT and meds that did more harm than good. I must say through all this I had amazing doctors that really cared, but RSD is still somewhat of a mystery and in 1989, rarely mentioned. Research and keep an open mind. Think LEAST INVASIVE! Try and keep a positive attitude toward your final desired outcome as much as you possibly can. Also, when dispair sets in....let it out! Here is a good place or with someone you feel safe or a therapist. Again HBOT gets the thumbs up from me!
All the best, Diana

Funny.....you can tell already that I'm scrappy and take little crap from people (perhaps why I have few friends???). Yes, I am my own best advocate. I really do not trust docs in general.....have been fighting for years trying to get them to properly treat other health problems I've had (TMJ, back problems, etc...). So, I am used to chronic pain even before this happened (I've adjusted to it). At least this is something I can PROVE to them (I can't "fake" my leg turning bright red immediately or my foot swelling). That sounds horrible to say that I am relieved I had these things so early on where the diagnosis was unmistakable. I've had all these other vague ailments that I can't prove but have suffered from nonetheless. I actually feel blessed....so many other people, such as yourself, suffer for months or years before diagnosis. The TMJ and back problems are more subjective and less easily proven, though no less real.

I am naive enough to think that this block I'm having will "cure" me. I am convinced (denial) that I have a "mild" case of this that will resolve quickly. I really will just take this one day at a time and do the best I can with each new day (no, I'm not usually this optimistic.....I've been through too much bad stuff in my life for that!! I'm just too tired to think any other way right now!!).

How soon after your diagnosis did they try a block??? I do know that little was understood about the disease 20 years ago. I am so sorry for the road you've had to travel with this. Have you ever had a "remission" (I tell people, a misnomer of terms in the case of RSD)?? Fortunately for me, I enjoy reading medical stuff and understand most of it easily.

Yes, I agree....the less they poke on me the better. I will be very vigilant to see how this first block goes. If it doesn't help, I won't have more. I am hopeful only because I had the surgery on December 3, the symptoms started on the 6th, so I'm very early on in this to have the block (I've fought every step of the way to get in the appropriate doctors). I'm not encouraged because I've had steroid injections in my spine in the past that didn't help at all and actually made me worse. I quit after the first two. I know these blocks are different, though, so we shall see.

We researched the HBOT......can't afford it. Hubby out of work for a year.....we're financially screwed right now anyway even before this. See??? No false optimism here!!

Anyway, thanks for taking the time to write. It literally means the world to me to talk to actual people (albeit virtually) that are surviving this and understand what it feels like!! I hope to reach many other people through this forum and give them encouragement and support just as you have me!!

I had the blocks three weeks after my injury. They were 10 days of Stellate Ganglion Blocks, as my original injury site was my right arm. I had three series, so 30 total during a few months period. I did get temporary relief. I then had to have shoulder surgery and when I got out of surgery I awoke to the worst pain ever. The nurse had the tube closed in the morphine pump and I wasn't getting any pain med, so I sent to recovery for more blocks that my Doc had standing by for me anyways. After surgery, PT terrible...Then the spread of RSD, and a right frozen shoulder. Remission...After 40 HBOT dives I have been pain free for 8 months. If I am stressed or busy, or have an accident, I must do maintenance dives between the 40 series. So I guess you could call it remission????? I just never though of it that way. If I try to make a vacation out of this painfree time, it always bites me in the butt. I must pace myself, stay on an RSD diet, Juicing, supplements and meditation, are part of the disciplined life I must live to be able to stay active. Its great getting to know you. Hang in with us! All the best Di

Hi Mom in Pain,

It's me, Loretta, been thinking of you a lot since I saw your post last night and just responded briefly, it was so late.Your surgeon is a jerk. He knows you have RSD from surgery he preformed. My daughter is a court reporter. She has done depositions on patients that got RSD following surgery. The surgeon failed to inform the patient of the risk of RSD from the procedure. Omission of facts has the same results as Comission of a surgical error.

I'm sorry you can't get HBOT right now. I see my Dr. once a month and he is building two clinics right now and each of them will have hospital grad HBO chambers in them. They will be the only ones outside of hospitals in Arizona. He is a neurologist, psychiatrist, and pharmacologist. He also teaches on the west coast. From New York, medical history at Cornell. I've been seeing him for 4-5 years now and didn't know when I actually got RSD till I was seeing him. The chambers won't be installed for another month or so. I'm anxious to get started with this treatment. I called Diana A and talked to her and was very encouraged.

Does your attorney feel there is neglience by your surgeon? I did not sue my surgeon, I held him responsible in my opinion, but didn't know what was wrong with me. My mother did die from a Dr's neglience. We initiated a lawsuit after discovering he misdiagnosed her and she would die from colon cancer in a few months. We went outside our city to a much larger city with medical malpractice attorneys. They video taped her deposition before her death. At trial, it was shown and my dad won a very large settlement and 100% medical expenses. She was only 46. I had the privilege of caring for her. She went thru 3 operations, medical Drs. gave up, went to mexico, no help, Went to cancer hospital half way across the country, had 3rd surgery there. We did not have medical insurance. I'm not suggesting litigation, but for some they feel impelled or a need to recoup medical costs, loss of income etc. Many RSD patients never work again. I know I'm not able to work anymore. My daughter just moved back from Chicago and back to her firm she has worked for for 8 years. The Chicago firm is very large and prominent.

I have had two remissions. My RSD started the day following a breast biopsy, actually two benign tumors, one deep in breast and one in arm pit. My arm swelled tremendously. My Dr. had gone on vacation the day following the procedure , so I saw his partner and he withdrew a lot of fluid. Same thing happened a couple more times. Started have shooting pains thru my back, then my left shoulder froze up. My Dr. returned from vacation and said, well looks like you have frozen shoulder, you'll need a couple physical treatments, referred me to rehab. specialist. Sent to physical therapists. After 50 treatments, they wanted me to see orthopedic surgeon and he wanted to operate. I had been receiving massage therapy just prior to p.t. on my dime. I said no to surgery and would keep with p.t. the rehab Dr. said it was the worst case she had seen. So had another 50 treatments and massage therapy. I was in remission (Didn't know I had RSD) Now I'm really glad I didn't have surgery. After several months, maybe a year or more my right shoulder started freezing up. We had moved in the meantime and before we moved the p.t.'s told me my good shoulder might freeze up. That didn't make sense to me. No one had mentioned RSD. Anyway, I found a pt. in new state and had a few treatments and went into remission again. Maybe another year or more I was water skiing and felt my left hand pull nerves and pain and immediate swelling. Dr. diagnosed Rheumatoid Arthritis, but didn't show up RA in the blood work. My hand froze up solid, all fingers straight and wouldn't bend. Flew back to original state to sports injury group of orthopedic surgeons. I had been to the knee Doc once before. Saw the hand Doc this time, and he said RSD within a minute of looking at me. Had hand tests at hospital to confirm. He started me on pt next day and order a tens unit. Came back to Arizona and found a neurologist confirmed RSD and saw hand ortho. and he supervised p.t. Didn't get full use of fingers back, but was desensitized and could use fingers again, they bend like a claw. But I'm grateful I can type, cut my own food again, and use hand partially. About a year later it spread to other hand, then feet and legs. back neck, saw a new neurologist and said he was full body or generalized. I found my present Dr. because I really need help emotionally, mentally dealing with loss of my previous life, and he managed my pain. I had spasms, electric jolts, jerks, dailey and nightly until this Dr. got me on proper meds. No more spasms. jolts, etc.

I'm sorry, I can't type any longer. Take care. Loretta Jewell

Hello and Welcome to Neurotalk! I am so very sorry to hear that you have RSD and hope and pray that you find something that will help you and ease your symptoms real soon!

I have RSD in my left leg and right arm, I developed it in March 2007 when I was 12 years old after falling down some steps and spraining my left ankle. It took me nearly 5 months to get an accurate diagnosis and I was later put on some medications that unfortunately caused my RSD to spread!

The good thing for you is that you were diagnosed really quickly. Treating RSD quickly is SO important whilst dealing with RSD and my Pain Management Doctor told me that the best chance of reaching remission is if your RSD is caught within the first 3 months as that is when the pain is "Sympathetically Maintained". After 3 months, the RSD goes to being "Independantely Maintained" which means that treating it is harder.

You are doing the right thing by touching your leg. I know it is really painful and you probably don't want to do it but that is one of the most important things you can do!! For the first few months, I didn't touch my foot at all because it hurt too much and I couldn't tolerate the pain and the allodynia spread quite a lot!! It took me about 6 months to try and learn to touch my leg and even then I didn't want to do it but I now realise that I NEED to do it in order to try and get me better.

If you have any questions, please don't hesitate to ask me - I am more than happy to help you if I can and I know how hard and lonely it can get at times dealing with this awful disease.

I really hope you find something that helps relieve your symptoms soon and I am keeping you in my thoughts.

Love, Alison.

Alison,
Thank you so much for responding to me! Yes, I FORCE myself to NOT wear a sock at night so that my foot rubs against the sheets (and the apparently not very soft coverlet, I now realize). I toss and turn in the evenings anyway so it gets plenty of desensitization. I have also worked alone to force myself to walk, walk without limping (slowly) and go up and down the stairs "normally". It is painful every step I take, but I am determined to deal with this NOW in the hopes that it will not spread and cause more problems LATER.

My first injection is tomorrow. I AM very fortunate to be diagnosed so quickly and decisively by three different docs in the first two weeks after symptoms started. I hope for the best with this injection tomorrow, but am prepared to take it all one day at a time thereafter. Of course I hope for "remission" (we need a more accurate term for that in the case of RSD), but am simply grateful that I can WALK at this point. So many other people on this forum have suffered far more and far longer than I have. I've already told my hubby that if something ever happened to me, I would want my body donated to science to hopefully help unravel the mystery that is RSD and to help other people from suffering in the future.

You and I had the exact same accident that sparked all of this. I, too, fell down the stairs and sprained my left ankle (the end of October '08). It didn't heal properly, I was diagnosed with a ganglion cyst on that ankle (which it ended up being a fascial tear of the muscle instead), and operated on December 3, '08. My symptoms began 3 days after my surgery.

You are a very sweet, wise young lady. I commend your diligence to keep in touch with this forum as well as your insight and motivation that you offer to others here. You are truly a blessing!! Best wishes to you for continued improvement!!