Hi Lauri, Welcome to NT, but so very sorry you have RSD. I am so happy you have a good family support system, that is a blessing. And your 'family' here will be too. There is tremendous knowledge and experience, as well as compassion and support. You have the added blessing of having a positive attitude and inner strength of fighting this.
15 years ago, I also had surgery and infection which instigated my RSD. but didn't get diagnosed for 4 years. Although was started on PT. I had frozen shoulder and took 100 pt to get full range back. Something that also ohelped me is- I had massage therapy prior to pt, which warmed the muscles up for further range. I also was given pain meds, prior to pt, which as with you, tortureous. I did get remission of over a year. The pt. told me not to be surprised if it went to the other shoulder and it did-out of the blue. More pt and massage and another remission. I personally believe the massage helped with getting desensitized and furthering the range of motion.
Lauri, from what I have learned, any form of surgery increases risk of spread of RSD. You might research, meds or anethestics that might lower the chances of that.
My third round of RSD was while water skiing, and feeling pull in hand.
That is when I was diagnosed and went to full body spread, and then internal spread. When in hand pt, I got about half of range of motion. Left hand is like a claw-delayed pt. wrong diagnosis, and I felt I had a wrong diagnosis, andwent to sports injury group a couple states away. LESSON; BE OUR OWN ADVOCATE
I'm so grateful to be mobile-what helped most with that was, is swimming in 86 degree water. Cold or Ice is not good for us. A good website is RSDSA-
the national organization- You can put in your zip code and find local support group. Also rsdrx.com puzzles list is a website in Florida. Dr. Hooshmand retired after 40 years of rsd practice, but the website is so informative. The puzzles are questions from patients and his answers.
Lauri, exercising and stretching to keep mobility is so important. Push yourself after taking your meds. Also desensitization- Take 5-6 plastic bowls and put cotton balls, fabric pieces, coffee grounds, beans, pop corn , sand, and run your hands and feet thru the bowls. This is important.
6 years ago, when I was diagnosed full body or generalized RSD, my neuro suggested seeing a psychiatrist to help me with mental adjustment to all the losses RSD brings in our life. I didn't like his two recommendations, so found one in yellow pages that is a wonderful source of comfort and education. He is a neuro, internist, psychiatrist, pharmacologist, and a couple more degrees. Board Certified. He oversees my pain management. I no longer have seizures after being on neurotin 3200 mg, gradually went off after 3 years or so. Besides vicodin, 4 per day- I'm on 2 high blood pressure meds, one anti-anxiety med-lorazepam 4x1mg Cymbalta 120 mg for depression, & sleeping agent, which also works on nerve pain as well. When Ambien quit working for sleep aid, he put me in his 200 person trial study for seroquel xr for fibromyalgia, which I also have. 300 mg.-started sleeping 10 hours a day.
Before that I was awake all night till 6 am. After the trial study, I didn't need 300 mg, and he cut it to 150 mg. and still sleep 10 hrs a day.
Epsom Salt Baths help relax in cool water and help to cool down. Also drinking COLD water.
When my toes started curling up off the floor, my Dr. had me swim every day while squeezing my toes-4 months later toes were touching the floor again. I am completely mobile except left hand like claw, but with therapy able to type with 10 fingers and am grateful to but my own food again, button buttons, and peel potatoes etc.
We live in Arizona, so hope to started walking dailey as soon as temp drops to 80's. We had 107 all of Sept. I exercise with 1# weights for an hour, and lower body 45 minutes. May get back to swimming this winter. We just moved out of our large home to smaller one on one level. I haven't been able to work, thus lost health insurance and income. Having a grateful attitude is so helpful.
We are 'here' for you and willing to help in any way we can. Please let us know how you are doing. I 'lurked' a while, but feel part of the 'family' now that I participate. It's also a wonderful feeling, if we can help in any way.
Take care, one of your new friends, loretta with soft hugs
