Originally Posted by Jo*mar

Feel free to post your story, your RSD history, or an introduction to the forum members.

Welcome to the RSD/CRPS forum.

Originally Posted by septmystic

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:

Originally Posted by septmystic

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:

Originally Posted by cindi1965

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Hello,
I am new to the forum and am so happy that I have found it. I was diagnosed with RSD/CRPS a year ago after having a staph infection in my lower left leg. It is now spreading and I have been to doctor to doctor trying to get them to listen to me. I finally found a good pain management dr. and he doesn't take my insurance. There are very few doctors in my area that will honestly diagnose and treat this disorder. I don't know what to do.

I also was born with Cerebral Palsy that has effected both of my legs, so now I have a double whammy with the RSD. I just need someone who will listen and a place to sound off when I get down, because as a lot of sufferers know you can't always get the support of their families.

My family is suffering because I used to have 2 jobs and now I can barely take care of my house. My husband tries really hard to make it easier on me, but he misses the way I was before. He continues to be wonderful, but I would like to make friends on here who understand why I don't want certain material on my leg and arms, and why some days are good and some days are really bad.

Thanks for listening.

Originally Posted by Denise G

I've commented some before. I'll fill in some details. First though, I want to say I'm so glad to find this site. I've had "the beast" for over 5 yrs but have never met anyone else with it. I'm hoping to get a chance to ask some of you more questions.

I was just leaving work on a Fri evening when a large room divider fell on me, trapping me under it. I'd seen it coming & "blocked it" from hitting my face with my right hand. Thought I'd broken several bones at 1st. Finally someone heard me yelling & pulled it off. My hand/wrist felt sprained, & my neck felt a little sprained. But within a couple of weeks (I kept working) I felt like monsters were attacking my right arm, hand, shoulder & neck.

I was sent to an Orthopedic Hand Specialist, who just shrugged when I showed him my swollen, deep blue hand & asked what it was. Even though my employer was furious that I never go a diagnosis, I kept going to this doctor (maybe I got hit in the head, too! ).

I had a torn ulnar nerve he said, & he put me in a splint & sent me for PT, too. The physical therapist kept saying something was "really wrong" with my shoulder, but the "hand specialist doc" just put off the MRI.

Two yrs later I got an MRI on my own & they found multiple torn ligaments, etc, etc. Fortunately I'd been seeing a Chiro who was GREAT with elbows & shoulders who kept it loose.

After the MRI diagnoses WC switched me to an Orhtopedic who was a "Shoulder Surgery" specialist. I told him I wanted to try injections before surgery & he went along with me (thank God!), because after 2 injections I could barely function due to the pain. I cried at work in the bathroom. That's when they told me I had RSD. Thankfully we didn't go straight for the surgery!

It took about another 8 months before WC would approve me for SGB's. But they worked fantastically when I finally did get them (total of 6).

My injury was in Aug 2001, and in 2002 I started having burning on the bottom of my feet. It slowly moved up my legs. They both now burn to just above my knees. I don't know if this is RSD or not. And, since WC only authorizes my doctors to look at my arms/hands (they've acknowledged it's moved into my left arm too, but not nearly as severe as right), the doctos just sort of change the subject when I ask what the pain is in my feet and legs.

Maybe someone has had a similar experience.

After I went to an Agreed Med Exam last Feb, not knowing 18 months of my medical records were not sent to him, he P&S'd me, so I have had to live on $720 a month "advances" from any settlement. I'm in dire financial straights! I've had to "live" on my credit card, now I can't afford the minimum & was on the phone arranging stuff with them today. But something always works out! I just thought my settlement would come through at least 6 months ago!

I live in a guest house that's just perfect, even though my family are all far, far, away. My landlords are my friends, & let me go without rent a month or two, even though they've had problems. But they just got a notice that their house is in foreclosure!! I feel so bad for them. So I'm trying to arrange to move....somewhere. I have about $75 to pay toward rent these days. So, I shouldn't have any problem, right?

If I didn't hurt so much & feel so tired, I'd dress up & go see if I could find a "Knight in Shining Armor"!!

I love to laugh, that's why I love reading some of the stuff on this site. You funny guys, KEEP IT UP PLEASE!

The way I try to look at it is that my life is kind of an adventure right now! I'm praying & waiting to see what opens up!

Take care all you precious people!

Denise

Originally Posted by Sheri

Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

Originally Posted by maryam71

i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure

Originally Posted by maryam71

i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure