Quote:
Originally Posted by Jennelle
So, not all of you know my story although I feel close to many of you. I hurt myself sliding a 10yr old 250lb girl up in bed while I was working as a pediatric nurse. Initially we thought it was all pulled/torn muscles in my neck and shoulder....then the tingling in my left hand...the numbness...the color change. A lot of test and dx with rsd early in the process. Not long after finding this site it spread to my right arm. Now I have had another bonescan,mri, and emg. My left shoulder joint is very loose, I have a herniated disc in my back and the worse of all...after a week of hell was once again diagnosed with a spread.....ALL LIMBS. I think the sinking of hope is worse sometimes then the pain...or maybe the pain is the same. Any of you ever had so fast a spread? I used to be a runner....now my left leg is always swollen and both my feet turn purple. I had to fight with my pain doctor for recovery meds....good news he'll do another block...just one and I get to pick the limb. Since the last one only lasted 3 hrs I am not even looking forward to it. How do we all do it....how do we live our lives and not loose hope after it slowly takes over our lives....In less than a year I have gone from an active fun-loving 29year old nurse, step mother of 3, and sister/daughter to a 30 yr old woman in an 80 yr old body. I want to thank you all for being there for me so many times and with all my questions. I think this site has kept me sane. I have made some good friends who I know I will continue to keep close in my life as much as possible. I am just having a pity party right now....I was hoping to have a child of my own soon...now I don't see how that could be possible. I have spent years taking care of other people's children (both at work and at home) and I think this is what hurts the most. So for any Mom's out there....can you give me hope? I have put my life on hold for so long already...my wedding, having children....working. I am scared Jennelle
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Hi Jennelle,
Thank you for sharing your pain and deepest desire-having a child. It's tough having all of this thrown on you so fast. We all were so shocked at each of our diagnosis I'm sure, and then even more when we found out what RSD and then even more when it spread etc.
This is a wonderful group of dear RSDers who really care and want to be there for one another in all of our trials-sharing whatever we know that might help. There are several Moms on here that had children while having RSD. It seems many of them went into remission while pregnant. You could ask the specific question and I know you'll have response or go back to older messages and read about different ones. I'm sure some might PM you and share phone numbers where you could talk in person. (on the phone)
Jennelle, you were injured on the job- you paid for WC insurance. They don't have a right to delay your treatment and compromise a possible remission. ''you get to pick one limb" Have you thought of hiring an attorney that specializes in WC cases. You have a right to life long medical care and compensation. This is a progressive disorder, with no cure. The treatment and medications are expensive. The unknown future of further possible complication is unknown. My daughter is a court reporter dealing with these type of cases dailey, including RSD. I never know any names or details, she never knows who cases turn out because she does pretrial depositions. But I know from my mothers early death and our medical malpractice case, it's good to get a very good attorney(usually from out of town-larger city) where the attorneys don't play golf together. There are others on the forum that are going thru this that know more about it.
I was married 12 years when we settled down to have a family. I was 31 and have never regretted for a minute the miracle of birth. She was breech and had c-section-no family to help-mom had already died at 46 and dad was ill and only lived a year after she was born. I do regret not having more children. 17 years later got RSD. But I'm grateful for the years we had together with good health. Because my daughter and I were so close, this has been extremely hard on her. We played ten nis nearly every day, snow skiied water skiied aerobics, traveled. Everything just came to a screeching halt. This is so hard on the marriage mates and families. I know counseling has really helped me. It's been 1 3 years now and full body.
Hope you get a knowledgeable DR. that you are confident in. My Dr. for the past 5 years has been wonderful. I attribute my emotional health mental stability and physical health to his knowledge. He is a Neurologist, Psychiatrist and Pharmacologist. I'm mobile because of him. He is building a clinic with HBOT and I'm going to try HBOT. My dailey jerks electric jolts, spasms have stopped thru medication and then we gradually went off after 4 years and have only had a couple episodes. Swimming has really helped me keep mobile. We live in Arizona which is better than Oregon for me. Got in RSD in Oregon day after surgery.
Please know we all care what you are going thru. READ READ READ and knowledge is power. It's wonderful you have found us, and you are right everyone on here cares and truly understand what we go thru. Hope you get some answers. Have you had physical therapy massage therapy. I was freed from totally both shoulders being frozen from RSD to full use from therapy and swimming. One hand is crippled, Have you gone thru desensitization? Will be thinking of you. Please let us know how you are. Hugs,loretta
