Living with RSD

Aloha, I am searching for a group or person in Hawaii I can connect with.

My roller coaster ride with RSD started back in spring 2007. Had a clot in my left leg (DVT) from a bus trip. It was not diagnosed or treated timely and left damage to my leg which is how i now have rsd I went through many ER visits, cried in unbelieveable pain at work and home and begged for help. I was finally referred to a Pain Management Clinic at the university who diagnosed me right away-WOW!The damage to my leg is permanent to a valve which allows swelling for long periods because the blood is not able to have a good flow back up the leg. I have damage to the saphenous nerve and major large brusitis in the same area.I also have a pain in my inner leg just below the knee that they still haven’t diagnosed-what year is this? They think brusitis.

The RSD has spread now to both legs, arms/hands, back and top of my head. I have had a number of lidocaine shots to my leg that didn’t work, so my leg gives out without anytime. I have been through the LSB and medications that take me months to adjust too.

I recently got these sores on both my legs and head, they itch and bleed and don’t heal. Nothing I put on it seems to help. I racked my brain and oneday searching the web on rsd found a picture of what looked exactly like i had-skin lesions related to rsd. Can anyone help educate me about these?

I unfortunately don’t have any family support. My husband and I separated because he doesn’t want to deal with it: he tired of hearing “I don’t feel good, can’t do the things or stay out like i used to, its always something else”. My husband,parents and siblings, etc haven’t taken any time to read any of the material I gave them or ask how I’m feeling. So, I packed up and moved to the island from the mainland where I don’t know anyone!!!(gotta laugh, my mom wonders if my strange behavior is related to the medication i’m on…ok)

I was on a good regiment of medications and had a different kind of injection in my leg that seem to “take the edge” off. Any changes to my meds takes me a few months to adjust(major light-weight). I also hide the best I can how I feel because I am looking for a new job. I refuse to go on any disability, etc, so i fight it the best i can.

I started with a new doctor who is really nice and 1 out of 2 who said would take w/c from another state. My family feels I am selfish and don’t understand how i could leave them??? My new doctor is okay, but the shot wore off, the pain in leg is back, pain is back up and i recently fell down a couple of stairs that left a black and blue bruise over my entire left buttock and a gash in my left arm (these caught the fall, not my knee). I didn’t go to the ER to sit a number of hours and be sent home,so unless i need to use an ambulance, i don’t go.

I am concerned because I don’t know anyone and don’t want the new symptoms and loneliness of not knowing anyone get to me. I did find a church but of course it takes a while to meet people and you don’t bear your issues on someone who doesn’t understand.

Thanks for reading my story and I not only hopes this gets posted but you will comment.