Hi MaraLyn, Welcome to NeuroTalk (although we are sorry for what brings you here) This is such a compassionate, caring group with lots of experience and knowledge. Please know you can come here any time, ask questions, vent, whatever your needs are.
I like yourself, got symptoms immediately following breast surgery-2 tumors in breast and underarm lymph system-benign. But immediately my arm started swelling SO BIG, My surgeon went on vacation next day, but his partner withdrew excess fluid with syringe. It was lime green. I didn't know that ment infection-but had withdrawal done 3-4 times. Not given antibiotics.
When Dr. returned, my shoulder was frozen. In the civil war when RSD was discovered, they used to call this hand-shoulder syndrome. My surgeon sent me to Rehab Dr. to over see a 'few' physical therapy treatments. Extremely important to get pt right away. It took 100 pt to get range of motion back.
I also did massage therapy, which I felt was very important to soften tissue to get ready for the painful pt. Took pain meds before the painful pt. Following the pt, I was in remission for over a year. The pt. told me it might move to the other shoulder. That sounded strange to me. We moved to Arizona from Oregon and after a year or so, it did go to the other shoulder. I got right in to a good pt. and massage therapist-one who just came off the pga tour and started his own business. Just took a few to get range of motion back. Went in remission again for over a year. Didn't have a diagnosis.
While water skiing, getting up out of the water, I felt a pull in my left hand.(original side of rsd) I went to a rheumatologist and he did tests and said I had RA- tests were negative. I didn't agree with him-my hand was frozen straight as a board. reddish blotchy color-I flew back to Oregon to see an orthopedic hand specialist that worked with sports injuries. He walked in my room and diagnosed me in 1 minute. Send me to hospital to nuclear med. and tests were positive for RSD. My husbands best friend is a nuclear med tech. He ordered a Tens Unit and started me in pt. I only got 50% use of hand back-it's like a claw, but I'm grateful can cut my food, button my clothes etc.When I came back to Arizona with a diagnosis and confirmed nuclear test on hand, I saw a neurologist-further tests were positive and saw an orthopedic hand specialist -who confirmed and oversaw my pt at his therapy office. His therapists were well trained with RSD. I also found a massage therapist and did that once a week. I believe because of the massage therapy and regular pt, I didn't have the sensitivity to touch that many struggle thru. I did it at home too. Took 5-6 plastic bowls-put sand in one, coffee grounds, cotton balls, rice, beans, pieces of fabric of different textures. ran hands and feet thru the various bowls. That desensitized my body.
Next, it moved to other hand-more treatment, then down to feet and legs, both sides. I fell and ruptured a disk in neck and had headaches, RSD ran down spine. A lot of us with RSD have had spread. I got it 15 years ago, and was diagnosed full body or 'generalized' 6 years ago. There are Drs. that believe it doesn't spread, but in many cases, it does. Having many procedures, cause spread. Even a blood draw. I have them use a butterfly needle-ask for the senior nurse and have it done in opposite original arm. It really is scary. Dental work, I take antibiotic day of cleaning-use laughing gas. There is a website by a Dr. who practiced RSD 40 years in Florida, he retired, but kept his website up. If you go to www.rsdrx.com puzzles list
There are 147 questions with his answers. Very good. Also, RSDSA is the national organization. They have conferences every year and it was here in Scottsdale last year and I attended-excellent. You can go to RSDSA and put in your zip code and get the closest local support group. The one in Phoenix is very good. We have guest speakers, and very encouraging.
It's not pleasant to look at, but at the top of the website of Neurotalk, there are a sections of pictures. You might find some that look like your skin color. I had lesions last year, sound like what you have-mine got infected and was very painful and hard to get rid of. I also get little red dots, like pimples in my ears, nose, scalp. Some people have itching. Compounding pharmacies make a compound that help with the pain and itching. My Dr. is contacting a compounding pharmacy for a recipe of lidocaine, ketamine???
I am suspecting some eye problems, so am going to see a eye Dr.
When I was diagnosed full body, my Dr. suggested a psychiatrist. Many with RSD find it helpful to see a psych. I know I do. It's like the grieving process, so many losses in our life and health. It takes time to working thru the grieving process of our losses. My psychiatrist, is also a neurologist and pharmacologist. Excellent Dr. Envolved with trial studies etc. I was having the uncontrollable jerks, electric jolts, going thru my body day and night. I was on 3200 mg of neurotin and then switched to Lyrica. They both cause weight gain, but totally stopped with seizures. I gradually went off and don't have those symptoms very often. I am on vicodin, lorazepam for anxiety, 2 double dosed blood pressure, which I didn't have before RSD. I played tennis 5 days a week, water skied, snow skied, involved in aerobics, runnning, I enjoyed my work very much, My daughter and husband and I enjoyed travel, she was 15 at the beginning. She still misses all the things we used to do together. She finished college and married and just lives a few blocks away.
It's very difficult for family and friends to understand this. At the beginning, they don't, but gradually they do adjust. They both went to my Dr. with me. Both read some on their own. My daughter is a court reporter and she did a deposition on a woman who got RSD. She they were helped to adjust thru reading. I found it best to be selective on who I talked to and how much. People in general don't know how to react and what to say, and tend to withdraw.
I am in the process of applying for SSDI. We sold our business and I don't have insurance any more. Our lives are so affected.SS does recognize RSD as a disability with not cure.
RSD was changed to CRPS when it was discovered to go internally and called it regional. It can cover the entire regional pelvic area. Very painful. Some on here have pelvic RSD. On the rsdrx.com puzzles list Puzzle #127 explains it. WWW.NVA.org also explains it. And Mayo Clinic .com diseases and conditions.
My RSD Dr. just opened two clinics that have HBOT in them. I'm going to try the HBOT. He is having some good success.
RSD is an autonomic disorder, meaning the involuntary organs. It affects our body temperature, that's why we can be burning up hot, or ice cold. It affects the Limbic part of brain, that is why we can be talking and suddenly forget the next words, Short term memory is affected. It also affects our immune system. I eat healthy and try to build up my immune system. Because our autonomic system is affected, we can have high blood pressure because of the sympathetic nervous system or low blood pressure from the para sympathetic nervous system. I've passed out from low blood pressure. Hospitalized for a few days.
The Ketamine trial study was done here in Scottsdale several years ago. Dr. Swartzman and Dr. Harbut were part of the study. They are now practicing in Pennsylvania and doing ketamine infusions. If I don't get relief from HBOT, I may look into ketamine.
There is hope! Be aware of how much you take in-if you are getting down, slow up a little. Too much information too fast. Journaling is something I have always done. There are many things we can do to pace ourselves. Music can be soothing, Positive writing, Talking with positive people, Biofeedback is something that helps me, Visualization also is good. Anxiety is something that affect us, as part of the Limbic System. The Loreazepam helps me. Also sleep issues affects many of us and it is imperative to sleep to get the restorative sleep to cope with pain and our condition. My Dr. did a trial study on 200 people and put me on it-my ambien cr stopped working. The study was on seroquel xr for fibromyalgia and they found it benited sleep issues. I have fibromyalgia too, so I started on 300 mg and started sleeping 10 hours. it was wonderful. Didn't need that much, so down to 150 mg. now. Now that I'm sleeping, my pain in down, so went down from 6 mg of vicodin a day to 4 mg. and from 6 mg lorazepam to 4 mg. Sleep does so much for us.
I know this is a lot to digest and I'm sorry it is so long, but I haven't been on the forum very much. We sold our home and bought another one and are in the middle of packing and moving. I haven't been able to work for some time now.
It sounds like it's been some time since you got RSD, so if it's SIP , that's sympathetically Independent Pain they won't do blocks (anethesiast) does the blocks. If the pain is independent, blocks won't help. What is serious, is further injury, surgery, they can cause spread.
I hope this helps some. I'm packing-then we'll have movers do the big stuff. Our new house is one story.
Oh, something that saved my feet is swimming. My toes started curling up off the floor, and my Dr. told me to do certain exercises every day. I did and in 4 months, my toes were touching the floor again. Water needs to be 86 degrees. Y pools and some club pools are that warm. I still do stretching and bathes with epson salt. Walking is important, even if for few minutes.
Moving has helped me get moving more, which is good.
What was your original injury that caused you to have surgery? Do you have children? My husband truly understands my pain now and is compassionate-at the beginning he didn't have a clue what I was going thru.
For me, I think it was a mistake to not be open. It actually would have been good for him to see me strapped down in therapy a few of the 100 times.
I'm very grateful for all the friends here, so kind. Grateful to walk, can type with both hands etc. Those are the things, positive things, we can look to. And it's a wonderful feeling to 'be there' for others.
Take care, one of your new friends, loretta with big and soft hugs