Hi Candicek and Welcome to Neurotalk,
I'm so sorry you are having these symptoms and having a difficult time getting a diagnosis. It was also 4 years before I got a diagnosis. I got RSD right after having surgery, a couple breast tumors , benign) Got swollen arm, lime green liquid withdrawn, infection, got frozen shoulder. Dr. got rid of me, sending me to Rehab. Dr. and Physical Therapy. It took a year and 100 treatment. I had massage therapy before p.t. and that got me furth along. I went in too remission after I got the use of my shoulder back. They told me not to be surprised if I got frozen shoulder in other side. And I did. more therapy p.t. & massage and full range back and remission again. About a year later, while water skiing, pulled nerve in my left hand. Misdiagnosed as rheumatoid arthritis and hand froze up. Didn't make sense so went to a sports injury group, orthopedic, and the hand specialist diagnosed me in 1 minute with rsd,sent me to neuclear medicine for test and confirmed as RSD. Your feet look like mine. It's been 14 years and I have full body now.
If you live in a city or near one, you can find a RSD support group by going to RSDSA.com It will have a place to put in your zip code and will give you name and phone number of a support group leader. We meet once a month at a hospital. Members have experience and generally know what Drs. in the area are knowledgeable about RSD.
Another website is rsdrx.com by Dr. Hooshmand ,retired from Florida. The website is full of information. If you go to Puzzles List, it has about 140 questions from rsd patients and his answers. He was a RSD specialist for years.
RSD is an autonomic disorder, which means it affects organs that are involuntary, like heart , lungs, body temperature, thus sweating, being so HOT or so COLD. blood pressure, both high and low. affects our immune system. RSD affects the Limbic part of our brain, that affects our short term memory, we sometimes have difficulty finding words while in a discussion. Many have jerks, electric jolts, spasms, thus need anti-seizure drugs. Depression goes along with RSD because of the Limbic part of brain. Anti-depressants are used for nerve pain. Some of us have insomnia. Anxiety is another symptom of RSD-Limbic. I take anti-anxiety meds, which help greatly keep the pain level down. Sleep is so important and keeps the pain level down. Swimming has kept me mobile. stretching, swimming=86 degree water temp.
If you are diagnosed with RSD, it's a traumatic blow to our life and lifestyle. Counseling has helped me a lot. My psychiatrist is also a board certified neurologist and pharmacologist. Just being on the right combination of meds has turned my life around, as well as talking to someone who understands.
This is a wonderful group of friends that are so compassionate and kind and experienced. We all are different in many ways as to RSD and how we react to meds and even what meds we are on.
Please know we all have awful down days and come here and it's OK to share our pain with our friends here. Thank you for the pictures of your feet. They look painful. I live in Arizona, and ones that live in snow country, really need to take care to keep warm.
Desensitization is very important to keep our limbs mobile. I had that done in therapy and at home. Took pastic bowls and put cotton balls, rice, popcorn, coffee grounds, sand in each bowl and run my hands and feet thru the different textures. Also, when I was diagnosed, my Dr. ordered a Tens Unit that I found helpful in distracting the pain in my hands, and desensitizing my hands. It has a couple batteries and it gives off signals, which you can regulate as to strength and frequency.
Actually a lot of us use distraction in our dailey life to function. I love music, scented candles, epson salt bathes, light massage. essential oils over lighted candles that give off scents. I love reading, prayer, meditation.
Ask your Dr. about driving and your meds. I can't drive within 4 hours of taking my meds. So I have a small window of time, I can run errands. I also have a handi-cap sticker for hanging from rear view mirror. That has been a wonderful help, not walking in big parking lots in 110 degree heat here in the summer.
Please know we are here for you, your friend, loretta soft hugs