Hi Lisa,
I'm sorry you have RSD. It's amazing how long we can have it yet learn more and more. I wanted you to know I live in Scottsdale, should you ever want to talk or post directly to me. I developed RSD the day following surgery back in 1996. It started with swollen arm and then frozen shoulder. It wasn't diagnosed as such, just complications from left breast surgery. I had PT and massage therapy. The rehab Dr. I was referred to and that oversaw my pt wanted me to see Orthopedic Surgeon. He was to operate to 'speed' up the process. Would still have to have PT. I said no thank you. I had already been thru about 1/2 (50) pt. I did the massage therapy on my own just before pt.
It was torture.So I finished out the therapy and had nearly all range of motion back.

Hi Lisa again, they told me it might move to other shoulder , I thought that sounds strange, I didn't have surgery there. Sure enough, a few months later after we moved to AZ, the right shoulder froze up.more therapy. Then while water skiing at Bartlett Lake, I felt a pull in my left hand, then started swelling. PAINFUL Dr. said RH arthritis. Didn't make sense, tests said no. Flew to Oregon, diagnosed by an hand ortho with RSD within one minute.

Hi again Lisa, I know it is hard to be honest with friends and family, they love us so much and can't stand to see our lives change and to be in pain and not be able to do what we used to do and love. I know I'm careful with my 29 year old daughter and my husband. They have both researched RSD on the net, so they know it's bad. They also both went with me to my Dr. of the past 4 years. But I feel caring for myself, means being discreetly honest.
I do have friends I can say anything to, two of them have RSD too. full body from a car wreck.My Dr. is a pschiatrist, neurologist and pharmacologist.
of course I can cry and say anything.
Lisa, do you go to any of the RSD support meetings at St. Joseph's hospital? They are once a month on a Saturday. It would be nice to meet you in person, family members are welcome, I brought my son in laws mother.
I don't drive a lot anymore, but still can.
Don't give up. and take care, Loretta Jewell

Hi everyone I'm Tiffany a 26 year old stay at home mom. My boyfriend was diagnosed with RSD back in May..We have two children a 9 month old and a 3.5 year old. I am very glad to find this forum. Geoff got in a motorcycle accident in March and broke his foot and it turned into RSD which is preventing him from walking without crutches. He goes to physical therapy 4 times a week went through months of epidural injections and now has (sorry i don't know all the terminology involved) but he has the thing implanted in his spine and an internal battery. Well he had the internal battery implanted above his butt and becuase he is so skinny it was literally ripping out so he just had it removed and they now put the battery in his stomach. Luckily he was working when the accident occured so he is on worker's comp. He is on so many medications it is crazy and he is such a different person...I am glad to find this board to learn more about this condition and maybe find someone like me that is having to care for a loved one with RSD. Times are tough here because we are living on worker's comp and I can't work because he isn't able to take proper care of the children. We have applied for disability once and already been denied. We are in the process of reapplying...

Hi Tiffany and Welcome,
I'm so sorry what you are going thru. RSD is a unbelievably difficult condition for both the person having it and the family. Hopefully, getting diagnosed early and getting treated, it won't spread. The medications totally change a person, I am that person in our family and my husband has had many adjustments because of it.
The medication probably is pain meds, anti=seizure meds,maybe neurotin or lyrica, make you very tired, very! Also with me I gained weight, as I was so active in sports before and worked out. I've had it 12 years now and full body. Depression is a big part of RSD as it affects the Limbic part of the brain which controls that part of us, as well as decision making. I also take two different blood pressure meds- didn't have bp issues before rsd. What helps a lot for me in an anti-anxiety med. called Lorazepam and a sleeping pill. Sleeping or lack of it is an issue with most of us. Short term memory or lack therof is an issue for most of us. I sometimes grope for works in speaking, and a little slow in my thoughts. It truly is a life altering event.
I got counseling to cope with that fact and deal with chronic pain. My phychiatrist is also my pain management Dr. He is a neurologist and pharmacologist, experienced in rsd.
My husband and married daughter with me to the Dr. to ask questions and both have read on the rsd sites. My daughter is a court reporter and has done medical malpractice depostions for a rsd lady. It's very hard on her. she is 29.
I'd encourage you to read as much as you can on this forum.
I don't qualify for ssd but have group insurance thru our business we own. Personally, I was going to use an experienced attorney if I qualified. RSD is recognized as qualifing for disability. I know I will never work again, as many on this forum. Keep trying and get an attorney if they don't cooperate. When you get it, they go back to your application date for back $ and attorney takes whatever he charges out of that.
If there is a support group in your town, it would be good to get in touch with them and attend. They can provide references and a lot of support emotionally. Usually, the meetings are at a hospital conference room. You can look up RSD. org and punch in your zip code and they give you the closest one to you. Sometimes, just calling the hospital and asking for list of support groups. If not RSD, maybe even a 'chronic pain' group or Rheumatoid arthritis group.
There is a very nice lady whose fiance has rsd, is here, but just can't remember her name right name.
There are things that I have learned for pain distraction. Listening to music, reading, being involved on this site, petting my cat, keeping in touch with friends both here and former state, by phone, or letter. scented candles. funny movies. trying to keep a positive attitude.
Thank you for the picture of your family! I love kids and being a mom. Our family traveled a lot, water skiied, snow skiied, played tennis, worked out , 10k runs. swimming. Swimming is one of things that has really helped me the most to keep walking and mobile.
My toes started curling, and my Dr. gave me exercises to do in the water and got them back on the floor!
Physical therapy is really painful, I went thru three different events. My RSD came the day following breast surgery, swollen left arm, then frozen shoulder. that fixed after over a year with a few months reprieve, then moved over to right shoulder, more therapy, then pulled a nerve while water skiing. Was diagnosed with Rheumatoid Arthritis, WRONG. Changed Drs. and had RSD since the surgery. 4 years late diagnosis.
Did Geoff have blocks? Is that what you meant by injections. that and pt. are your best hope for remission, and that does happen! it really does. After my therapy and getting the use of my arm back, I was back to tennis, everything, till it hit again the other side. then had several months pain free, till the water skiing thing. Since then, it's been down hill.
You will find lot of very kind supportive understanding friends here, on both sides. It's wonderful you are reaching out to others, You'll better be able to understand what Geoff is going thru and receive the encouragement you need as a caretaker. I am so very sorry your family is going thru this. We had never even heard of RSD, as obviously half the drs. in this country haven't either. But unfortunately it is becoming more and more common. Please, reach out anytime and you will have a lot of support. Take care, Loretta