Hi Sandy

You sound like the person that has similar internal pain to me. mine all started with gallbladder surgery and then a "tummy tuck" to cut off all the swelling. BUT what caught my eye was that my periods stopped after my tummy tuck, and my gyno said im not in meno pause and she gave me meds but it wouldnt start again. i dont miss it...but just wondering how it all ties in. I have 70lbs of swelling on the right side of my abdomen, the pain is incredible. all the docs i have seen are clueless. i just found RSD yesterday and trying to learn all i can. I am mostly bedridden because of the swelling and pain.
any advice is appreciated.
Lori

Dear Lori,

My RSD started with a shoulder injury in 11/2006 and repeat shoulder surgeries. I was initially diagnosed by my ortho surgeon in 6/2008, the diagnosis has been confirmed by 4 additional pain management docs that I've consulted since then in my journey to get better.

I would urge you to try to find the best pain management doc and/or anesthesiologist that you can. Search for someone that is board certified, with a large city hospital's pain clinic, or in a well known teaching univeristy's hospital. Are you close to DC? George Washington University and Georgetown hospitals both have good reputations.

My internal issues occurred after my RSD spread from my upper right extremity to my neck, my head, and my right leg. But I have never experienced swelling such as yours - to the contrary, I LOST a ton of weight with my RSD and became pretty thin until just recently, when I completed 20 low dose ketamine infusion treatments and tapered off most of my opiod meds. I've just started eating more in the last 10 days or so.

My right leg is still swollen, but it's only about a few inches wider than the other leg, and wouldn't add up to much in pounds. And my arms, shoulder, and neck are terribly thin compared to when I was younger, when I was a fantastic swimmer and had a great build, because of atrophy from disuse.

There is a lot of great research info about RSD on the RSDSA.org website - I would urge you to spend some time picking through their database. You might find something that gives you some insight into your condition.

The best of luck to you. XOXOX Sandy

It just feel SO AMAZING to find you all! I have been alone fighting this for 5 years, so scared with every new symptom that comes p that doesnt fall under any illness. my family does sits by and watches me deteriorate. with each post i read, i feel hope. i wont be posting much just reading and learning. Blessings and happy 4th to all!
Lori

Dear Lori,

Welcome. I hope you never feel alone again. It is so scary, not knowing what is happening, but knowing that SOMETHING is NOT RIGHT.

FMichael posted the names of some docs at John Hopkins for you on another post. The VERY BEST thing you can do for yourself if get to THE BEST pain management doctor possible that can help you and your family diagnose and manage your symptoms. It will make all the difference in the world for you. Many of us have gone to numerous doctors before finding the right one....

Good luck and know that we care, XOXOX Sandy

Sandy has great advice..!! Sandy..you ar so eliquent and compassionate...

Your Dr., who manages your RSD will make all of the difference in the world..allow them to know you and your status and keep up with new treatments and ideas on your behalf..I believe having a "neutral" person to talk with is also important..A couselor..as we need to have an hour once in a while to let loose and feel all bars down..We can not handle everything that is happening/going to happening to us..both physically and mentally... our families have a bunch on their plate watching and trying understand what is happening..it is so hard for them also esp. since we don't have all of the answers...I have really tryed and will continue to try to understand the impact my illness has on my family and friends...my heart goes out to them even tho it may seem like I have a bitter reaction they are being swallowed up by our aliment as well as, us just they don't know how to react to it not handle it either..It is different for everyone invloved..

Welcome lori...Please lean on us for strength and love.

Kathy

thank you all very kindly.

i am trying to convince my drs that this is what is wrong with me. one dr wants me to get a bone scan that might show it, but he doesnt thik it will since i have abdominl pain. im at the end of month pain pills, and not enough left to control the pain. i hate asking them to increase my meds at the pain clinic because they look at me like im a druggie. couldnt be further from the truth. i havent had a diagnosis yet for the rsd, so they have mostly have focused on my herniated disc.

i have memory loss short term and long term, do you all have this too?
i take prednisone to keep the swelling from growing. everytime they try to switch my meds i swelled more and it doesnt go away. i also take imuran to suppress my immune system. plus so much more.
wht helps you on the days when the pain meds dont take away your pain and your brain doesnt stop thinking!!! thats how i feel today. like i have no control over my life since pain is the center.
thank you for listening!
lori

Lori....

Believe me..We all have these hour/days you are experiencing...Try to hold positive hope in your mind and heart..Educate yourself and be your own best advocate..When I have bad hours/days..sad and hopeless...I try to reach out and do something or say something nice for/to someone else..That in turn takes my mind off my pain and helps my heart and gives me some thing else to feel good about..least for that period of time anyway..I am not able to withstand pain meds, bad tummy.. so I have the pain constantly with no medicine help and it has been 3 years...so I had to find an alternative way to feel better, without losing my mind..look for something to help you cope..reading, talking.. meditate ..sing..cry or even listen to the birds.. talk to us...but what ever it is it will be worth a million to help you cope...my best wishes, Kathy

Dear Kathy

i started acupuncture a few weeks ago before i found the rsd web site. have you tried it for your pain? i found some sites that says it helps so i will keep trying it. my acupuncturist is being very generous with not charging me hardly anything to go, he knows im broke financially, so its been a blessing. thank you for the idea to help others. my daughters, i have twin 19 yr olds, just left to go back to college. they are 4 hous away so i get to see them every few months. i miss them and love them so much, so i think its extra heart pain today too. yesterday i started stressing knowing they would leave today. they took me out to see the fireworks and hang out together, so it was a special happy night.

i hope you had a nice 4th too. do you have children too? im 47 and been married for 28 years. my hubby is my care giver. hes a blessing too. there must be a way to fix this illness for us! my family is certainly in pain for me, its hurt us all.
thanks for being so kind and reaching out to me.
Lori

Yes, Lori..I have 2 children..a girl 16 and boy 14..They along with my husband bring me much joy and are attentive to me... also sweet friends...I am exactly your age, actually turned 48 last week...Accupuncture, I did but it did not help..I have had spinal blocks 4/5..did not help.., much medicine tryed and tossed up.. I have a spinal cord stemulator in place but did not help..and now been told I would benefit from the 5 day sleep with Dr. S in Philadelphia..but unable to get funded for that..now much of my time is spent filling out disability forms and finding the love in my heart to share as if I don't I could crack due to the pain..and I forbid that to happen. You are welcome..Hang with us here..We have a wonderful supportive forum family!!

Hugz, Kathy