abdominal and pelvic RSD
 

Who has internal RSD in their abdomen or Pelvic area. i have constant swelling i think due to 3 abdominal surgeries i have had. does anyone have a large amount of swelling?
i finally have pain relief since i found this board. my doctor switched my meds to methadone, neurotin and fentynl patch. i had to go to my pcp. my pain clinic kept me on percocet and oxycontin, wouldnt change me even though i said my tissues were still feeling like they were burning. never out of pain.

im trying to find a doctor who knows about this disorder, any tips on how to find one? do i need a neurologist? how do i find a pain clinic that will listen!
thanks
Lori

I was diagnosed with RSD while I was in the Army stationed in Germany.

The military doctor I was lucky to be seen by that day, was very aggressive in trying to figure out what was wrong with me.. I never felt as she didn't believe me about the pain. But 99.9% percent of the other military doctors would see me for 1 minute and send me on my way. Even my Company Commander and 1st Sergeant didn't believe me and forced me to do things that only worsened the pain even though the doctor had me on permanent restrictions.

She (military doctor) was able to get me in to see some German Specialists and they all came back with the same conclusion. RSD. I was taking tons and tons of meds while in the military. Thankfully because of her aggressiveness in my issue, my RSD has not reached a level that is out of control.

The VA doctor I see about RSD doesn't have a clue about RSD. I use the VA doctor because I aquired RSD while in service and it has been rated as a service connected disability. He just gives me the same looks and the same meds.

If your out their Captain Beth (her first name, I forgot her last name) Thank You for doing all that you did for me. Even confronting my company commander and standing up for me. Your the reason I have some sort of control of it. Thank You from the bottom of my heart.

referral in Bethesda, MD
 

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Hi Lori,
 

My stomach swells like I'm pregnant. they just went in and looked around and found nothing. I am on Metformin and Amitiza for this. I have had a lot of surgeries also that's why they looked around, to see if I had tumors or scar tissue. I can't be on my feet for long due to my stomach swelling and I was also diagnosed with RSD in my right side. That keeps me from standing too long.

I just had surgery where they cut a nerve which he felt scar tissue was causing problems with as well as it being damaged from my last surgery I had about 5 years ago. He cut the nerve, a ligament and took out adhesions. I do have Intersital Cystitis{a bladder disease}. It took us about 7 years to get that pain under control.

Since you have had surgeries, scar tissue might be a possibility. You might see someone about that. I saw two Gastros and 3 gynocolologist and a pelvic pain Dr. before my PCP and a new surgeon in town helped me figure out what needed to be done this time.

I have better care from my PCP then I ever got from the PM and Neurologist I've seen. What he didn't know, he learned. I am glad the PCP is helping you in this way. It's just finding that right Dr., it's time consuming for sure.

Feel better soon.
Ada