Hi Grettas 3, I've had RSD 15 years, starting with surgery for breast tumor and immediately followed with frozen shoulder. Dr. referred me to a rehab doc to oversee the physical therapy. It was tortureous, but absolutely the way to get range of motion back. It took nearly a year, I took pain meds before the pt and did an hour of massage therapy to loosen everything up. I am so grateful I did this... 1/2 way thru, they wanted me to have surgery to break loose my shoulder. I said no, I'll stay with pt. I didn't know for 4 years that I had RSD. After the year, I was so happy to be over the therapy and have use of my arm again. The therapist did tell me that it is possible that the frozen shoulder may go over to the other side. About a year or so later, I did get it in the other shoulder. But that year of remission was wonderful.
I did more pt in other shoulder and it didn't take very long to get full range of motion back. Another remission. for at least a year. I was water skiing and felt a pull in my hand-Dr. misdiagnosed me, I felt he was wrong so went to a good hand Dr. and immediately diagnosed me with rsd. and test confirmed it.
More therapy and only got partial use of my hand. It's frozen like a claw. but can cut my own food etc. The pt started too late to get full use. The rsd moved to other hand and lower body-actually have full body now and internal. I am 62. Very grateful to a wonderful neuro/psych helped me adapt.
You know when you have surgery, the nurses at hospital suggests taking your meds. Taking pain meds actually relax your body and helps your body heal faster. Pain tightens everything up and slows progress. So even though we don't like taking pain meds, it's actually helps us deal and heal. There are other meds that work on nerve pain that help me. I take lorazepam, an anti-anxiety med. RSD causes anxiety. so this drug helps cope and I actually use less pain meds. Also some anti-depressants help with nerve pain, so I take cymbalta and that also helps take less pain med. Sleep is imperative to help heal. Restorative sleep is a must. My Ambien CR quit working and my Dr. was doing a trial study of Seroquel XR for fibromyalgia and found it helped some people with restorative sleep. The study my dr. conducted had 200 patients and he added me to it. I sleep 10 hours straight. I take 150 mg. of seroquel.
I'm so grateful now. I was able to lessen my pain meds. I had been to as much as 6 vicodin a day and 8 during a flare. plus 8 mg of lorazepam. 2 drugs of anti-depressants. After the seroquel and sleep, I was able to go down to 4 viodin and 4 mg of lorazepam and 1 anti-depressant of cymbalta 120 mg. My Dr. also is a pharmacologist, and internist, and is certified in HBOT.
One important thing during therapy is to counter sensitivity to fabric etc.
They had me use 5-6 plastic bowls with different textures, like cotton balls, beans, sand, rice, and put hands and feet into these textures. Also the Dr. that diagnosed me order a Tens Unit which helped as a distraction of nerve pain. Insurance pays for the Tens Unit and the replacement pads.
My Dr. now is working on a compounding formula for skin lesions, dots, that are painful and are different parts of legs, arms, scalp, It's a gel. It will have ketamine, lidocain, and anti-inflammatories in it and I don't know what else.
I may be able to get a contact for you in Ireland.I"ll Private message you.
I live in Arizona, married, with married daughter & son in law.
Stay with us. There are many compassionate and knowledgable friends here. Take care, one of your new friends, loretta