Hi All,

I have told my long story many times and how I always felt there was something else wrong with my RSD Arm besides the rsd. Well finally, after 3 years of questioning and reading and wondering my doctor finally thinks there might me more then just RSD. Don't get me wrong I believe I always had RSD but something else was wrong. Most of my RSD symptoms have calmed down tremendously through all the procedures includng ketamine. But I was left with a chronic pain in my arm/elbow that just never quits. The pain is inside my arm right next to the elbow so I am able to protect it for the post part and deal with the pain with a low dose of medicatioin. I also believe this situation is what keeps the RSD alive, for lack of a better word, because I still at times will get burning, spreading of the pain down my arm to my hand, the headaches, sleeping problems, swallowing problems etc. but these symtoms come and go and can go from minor to quite sever at times.

Anyway, I posted I had pneomonia(spelling) a couple of weeks ago and still getting over it. They gave me prednisone to help with the lungs. Keep in mind I was given prednisone when I first got injuired back in 2003. My arm,hand,elbow was so swollen after the injuriy they used prednisone to get the inflamation down. I told my PM Doctor that while I was on the prednisone for the pnemonia I had 0 pain in my RSD arm. He was really surprised and stated and I quote him, "prednisone would not do a thing for RSD". So we breifly discussed what has gone on in the last 7 years and he said maybe we should do some studies to see what is happening.

I always have felt that at the end of the day there was something wrong with this arm. Just because I wasn't screaming on the floor in pain and I came so far with this injuiry, I mean I was told I might not ever be able to use this arm again and today if I didn't tell you I had this horrible disorder or saw my scars you would not even know I had a problem. But I do suffer every day and it has changed my personality tremendously. So this spring I will start the process of trying to find out what is really wrong but at least I have the support of my PM Doctor.

I will begin with my current surgeon and go from there. I believe I have a neuroma or a small nerve compression.

Wanted to share this because you never know how things could change and I welcome any suggestions.

Gabbycakes

The best of luck to you. Please know that I care....xoxox Sandy

Hi Sandy,


Thanks I really appreciate it. I'm not rushing to do anything but at least I'm not spinning my wheels and have some direction.

How are you feeling. From your post it sound like you are doing well.

Keep me posted.

Gabbycakes

Please keep us informed. I hope it is nerve compression and can be rectified. My wife's wrist was broken in which set off her RSD. My gut tells me she has compressed or trapped nerves somewhere in there. She has had negative EMGs. That wrist was not set correctly the first time and she had to have it rebroke and set. From that time forward our lives changed.

Gabby,

I also believe there is something else going on with me with this severe muscle wasting...I am still waiting for someone to figure it out!!!

Good luck

Deb

Hmmm...this happened to me on my journey towards my diagnosis of RSD....

I was born with mild cerebral palsy and have had arthritis in my knees since I was 12. Over the years I have developed a Baker's Cyst behind my knee, which is a water based cyst that covers the whole length of the crease of back of my leg. It has never given me trouble until I contracted a MRSA infection that lead to tissue damage below my knee cap all the way to my toes. At first they thought that the cyst had burst, but all my tests said that it was still in tact. Then one dr. mentioned that I may have had RSD since I was 8 and had surgeries on my legs to lengthen my tendons. I had heard so much from so many docs that I just barely heard it until a recent conversation with my mother. She said that when I was little I would complain that my leg was burning all the time. I guess she was right because I have been in pain my whole life and the MRSA infection just placed the pain in a different spot. I hear a lot of people who have RSD also have secondary problems, such as neuropathy.

BTW, most of the time they do nothing for a Baker's Cyst unless it is causing pain or fills with more water. The cause of the cyst, in my case, is from having arthritis. I hope you can find out more and my prayers are with you!

Hi All,

Thanks for all the support but I'm not rushing,I'm almost afraid to open the can of worms. If I had to have another surgery I don't know how I would mentally prepare. I'm a pretty stronge person but it would be #8. And the thought of coming out the same would be ok but worse I don't think I could handle it, I can't even think of it. But on the other side if I could get rid of this pain I know the rest would settle down, it controls the rest of my symtoms, as it gets worse depending on what I'm doing or what is going on and it's just a constant up and down. I would love to just be able to funtion like I use to be able to.

One step at a time


Thanks again,

IT'S GOING TO BE 50 DEGRESS HERE TOMORROW. OMG A HEATWAVE...BUT CAN'T WAIT.

Gabbycakes

I think we should always trust our "gut" feelings, and pursue whatever treatment/testing you feel might help pinpoint the problem. Just be careful not to appear to be not believing your physicians, as they don't always take this well! (from a nurse who has seen this happen time after time) It is our bodies, after all, and we know them better than anyone else! Sometimes we are wrong, and it is what the doctor thinks, but I think most good doc's will listen if you explain why you feel the way you do. Good luck!!

Gabbycakes, I started with what they thought was a neuroma but then they just said it was a compressed nerve and surgery doesnt have a high success rate-and it didnt. My RSD has spread everywhere and i feel like it is just a viscious cycle that will keep my RSD in flare. I met a friend that was diagnosed with RSD a few years before me. She started with new neurologist who thought it might not be RSD and did an MRI of the brain and found that she doesnt have RSD but MS.
I hope they are able to help you.

Hi Gabbycakes,
Glad to hear you are doing better. Wow, pain level zero after prednisone???!! Great. I am happy for you. I too feel like I have more of an injury in my foot than they are saying after six years too. I was set up to have the nerves frozen around the pain area in my foot and the WC canceled it. I thought before the ketamine that why not try it. I was told my pain would be greater after the outpatient treatment but then it would calm down for several months. I did have a stronger MRI in NYC at HSS and it showed I have soft tissue damage in my foot but the regular MRI's I had showed nothing. It's interesting. We know our bodies better than anyone else yet most people cannot even imagine the pain we are constantly in or have a problem grasping it. My chiropractor did tell me years ago that I did have nerve compartment syndrome and I could have surgery but she voted against it saying if I did the surgery once I had to have it repeated every year because scar tissue grows back so I never did it. Like RNcrps2 said her friend thought she had rsd but has ms (the best of both worlds huh). The first month I had this the WC IME said she thought I had ms instead of rsd and they paid for a huge amount of blood work and MRI of my brain and it all showed nothing so I have rsd by ruling out the other diseases. I laughed at the doctor because I said don't you think I would have gone to my family dr by now?? They are so clueless. Keep us informed as to what is going on. Best of luck. I am thrilled you are getting some relief. Yeah for you!!!!!!!!!!
kathy d