Abdominal/pelvic RSD
 

Hello

I have been suffering for 5 years trying to find out what is wrong with me!!!
I had gallbladder surgery and instantly had burning pain and swelling and more swelling. can any one relate to my situation? then a plastic surgeon had an idea 3 years ago and said lets cut off all the swelling so they cut me hip to hip cut off 25lbs and i went code blue and they brought me back. so many things went wrong with my health right after that surgery and the swelling came back more than double. i have about 75lbs of swelling on the right side of my abdomen. pain mgt and laying in bed is almost all i do. i work from home so i have something to keep my mind busy.

i called my rheumatalogist the other day to see if he thought i had RSD but he said it happens on limbs...then i said no i have read other data that says it can happen on your abdomen. i have had 3 surgeries on my abdomen...the first one was a C-sec that started fibromyalgia. because of all the swelling i have herniated discs in my lower back, so when i stand up, all the pressure of the fluid and pain in my back, i have to walk bent over and lean on a walker with wheels. im only 47 and want so much more out of life.

Can anyone please make suggestions. I took ketermine orally several years ago but it didnt help, just made me goofy.

Please help me if you can. Im having a bad flare up today so i apologize for being extra whiney.
Lori

so much pain, i would be dead without my families support.

you arent being whiney. Pain is what we have in common here. I dont personally have RSD in my abdomen, but if you search there is a few posts about internal RSD. That should help you a bit:) Hang in there:)

Hi Lori, Look for Loretta's posts. She has internal RSD in the pelvic area and she might be able to be some help. You are certainly not whinny, you are just in pain. Welcome to this great bunch of people who are more than willing to help you through this journey. Lisa

Dear Lori~

I am terribly sorry for your situation and aweful pain..Lori, I have RSD in my pevis, left side..among other areas..(limbs, rt.jaw and some internal)..It all began in my rt, leg following knee surgery in 07. I can first tell you that it does exist in areas other than limbs...I was given my Diagnosis not only by my PM but also Dr. S in Philly..... My friend..the pelvis pain is very exact..As I sit I have as to becareful not to sit on that side of my butt...if I do.. the pain is hot and is so sharp it sends my head realing backwards with an instant scream from the pain..Then I can feel the heat right thru my pants...it is always a sore sensitive area with a small rough spot on my outer skin...I am sorry that you suffer this..As all of us know here, RSD is a nasty animal...Please, read and read more to educate yourself..It is wonderful to have you with us and please allow us to help you with any questions or concerns...Remember, do not use cold on your affected areas..that will make it worse! Lets us know how you are doing....

hugz, Kathy:grouphug:

Lori -

Where you live in Virgina, there are a couple of programs in Baltimore - at Johns Hopkins - that may be of interest to you::

1.) Johns Hopkins Research Program for the Study of Chronic Pain Syndromes in Women Principal Investigator: Ursula Wesselmann, M.D., Ph.D., Associate Professor of Neurology, Neurosurgery, and Biomedical Engineering http://www.neuro.jhmi.edu/PelvicPain/home.html and

2.) The Johns Hopkins Women's Center for Pelvic Health, http://www.hopkinsbayview.org/pelvicfloor/index.html

Dr. Wesselmann is tremendousley - nationally and beyond - well regarded and specializes in pain of neurological origin ("An important feature of our basic science studies is the possibility of a rapid clinical outcome, based on a better understanding of the nervous system pathways processing nociceptive information from the pelvis and urogenital area, and the readily available opportunity to study pharmacological manipulations in these animal models . . .") whle the Women's Center for Pelvic Health appears to be organized along traditional ines of OB/GYN, Urology and PT.

Worth checking out in any event.

Mike

thank you for your kind reply,
i keep getting reminded of more symptoms...you mentioned the rough skin, feels unlike and other skin on me, its gross. i feel ugly and gross an so swollen. im having a flare up bad. i can hardly walk any more and my twins are 19 and visiting my hubby and i. i cant help hardly do anything. my mind says go and my body says no way. at lease i can fold laundry and i work from home talking on the phone supporting us. but i still fell useless being trapped in my body. i have had this dillusion that once i found what was wrong with me, i could get cured. i can see that wont happen now. for 5 years no sex with my awesome husband, we had a passionate sex life then zero! too much pain everywhere. he doesnt care or mention it but continues to love me and take care of me. guess i did some thing right somewhere in life.
blessings
lori

Hi Lori,
 

Your story sounds like mine. I have complained of pelvic pain for years. It has gotten so much worse in the past 7. I have had a hysterectomy and then had the second ovary removed, then had to have my bladder and rectum put back up and then had scar tissue removed. Now they are talking about going in and cutting a nerve on my left hip area. He says it will make it numb in that area but it might be better then the pain I have dealt with for so long.

I get triggerpoint injections inside and out. I have also had treatment for interstital cystitis. You might want to see a Dr. about the IC.

I totally relate to you. I can't walk when my pelvic pain is at it's worse and it radiates down into my legs and feet at times now.

I hope you find some answers soon.

Ada

Family support is wonderful and helps when you have to deal with so much pain.
I have fullbody RSD with some organ involvment.
I started having terrible pain in my pelvic area, hips and down into my left leg. Add more leg pain to the present RSD pain and it was more than I could stand. I don't know if this will make sense as bad as the pain was it was a little different than my RSD pain.
I had an MRI that showed some degenerated discs in my lumbar spine causing pressure on the joint in my veterbra which caused pain to radiate into my hips and down my leg. I had three lumbar epidurales (spelling) that helped the pain go back to the normal RSD pain I deal with. I get pains in my pelvic area but they aren't like they were before they are more like the RSD pain I have all over the rest of my body.

I say all this for you to ask about a MRI of your spine or just the lumbar (low back) to see what is going on with the nerves coming out of the spine in your low back. You could also ask about a CT mileogram. A dye is injected into the joints and they watch to see if the nerves are pinched. If something is causing pressure to the nerves it could be fixed and give you the relief you deserve. Talk it over with your doctor best of luck!!!
Sherrie