Hi overthehill and Welcome to Neurotalk,
I'm so sorry you have RSD and had delayed treatment. I understand your frustration and the confusion you have been thru. The fact is: not all Drs. or specialists even know about RSD or if they do, have different opinions.
I, too, got RSD following surgery, breast tumor (2) biopsy. Benign, but immediately following the surgery had swelling and shocks thru my upper body. My surgeon went on vacation the day following my surgery, so saw his partner. He took a syringe and drew lots of fluid out. It was lime green. I know now, that means infection. He said nothing and gave me ZERO antibiotics. I came back a couple more times for fluid withdrawal. My Dr. returned and by then I couldn't move my arm, he said frozen shoulder-you'll need two or three physical therapy treatments. Sent me off to a Rehab Dr. that oversaw my 100 treatments. After 50, saw an orthopedic surgeon who wanted to break my shoulder. Said no thank you thank goodness. Along with the p.t. treatments I saw massage therapists on my own dime. 100 treatments just before going to p.t. Had pain medication because it was sooooo painful. I went into remission. had nearly all my range of motion. I went back to tennis, water skiing, etc. for at least a year. But developed depression and panic attacks. Didn't understand what was happening. At the end of my p.t. the therapist said don't be surprised if your frozen shoulder moves over to the other side. I thought, that doesn't make sense, my surgery was on my left side. We moved from Oregon to Arizona.
And guess what, I got frozen shoulder in my right side. Went to physical therapy here, and saw the Diamondbacks Orthopedic Surgeon that gave me a couple of cortisone injections. Had the massage therapy too, again paying for it myself, as I felt I would get the use of my arm faster. Went into remission again for at least a year. Traveled, tennis, water skiing, While water skiing, felt my left hand pull a nerve. Swelled up and very painful, discolored, and touch sensitive. Saw a Scottsdale specialist and he took x-rays, blood tests and went back and he said you have rheumatoid arthritis. I was in so much pain. He put me on RA meds-I told him it didn't make sense as my tests were negative for RA. I decided to fly back to Oregon to a sports injury group, saw the Hand Dr. and in less than a minute, he said RSD. Sent me to hospital for neuclear med test, confirmed it. Ordered a Tens Unit and Physical Therapy. Came back to Arizona, saw neurologist and orthopedic hand specialist, both confirmed RSD and went into physical therapy and desensitization. Got partial use of hand, is partially paralyzed. That was 11 years ago. Maybe a year later it was in my right hand. more therapy, then both feet, legs, up in the neck. Saw a new neurologist and he said generalized or full body. Encouraged me to see a psychiatrist. Didn't like his two recommendations, and found one in the yellow pages. From New York, Cornell psychiatrist, neurologist, and pharmacologist diplomat. Small practice as he taught on the west coast weekly. He has saved my life, by listening, compassion, getting on the right meds at the right amounts. I've been seeing him for 5 years. He doesn't take insurance, I pay $250 an hour and see him monthly. All my toes started curling up off the floor and he had me dailey get in our pool and exercise and swim. In about 4 months or so my toes were touching the ground again. I'm still mobile.
RSD affects the Limbic part of our brain. That's why depression is big. We are talking and loose our thought or can't grasp the work we want. Short term memory is affected.
Yes, the sympathetic nervous system affects all parts of our body. Anti-anxiety meds help calm the sym. nerv. sys. and lessens the pain. I take lorazepam, others take ativan.
Most of us have sleep issues. Electric shocks, jolts, spasms are part of the symptoms. Neurotin or Lyrica is the drug most are on. I have taken both. 3200 mg of neurotin to quiet my system down. Switched to Lyrica, 400 mg. Both cause weight gain and I asked to go off. He gradually took me off and I've only had two minor jerks since January this year. I'm on 120 mg. Cymbalta,
The sympathetic nervous system affects circulation, blood pressure, body temperature-why we sweat or freeze to the bone. I'm on two blood pressure meds. The para sympathetic nervous system can cause a sudden drop in blood pressure. I woke up one morning and got up and felt the drop-fell into the wall, the door, got to the restroom and passed out. Was out at least an hour and half. My husband was upstairs. I couldn't get up, so crawled on my stomach and banged on the door. He opend and I said call 911-I was a mess lost all control. The ambulance came and I was in and out- one of the paramedics said he couldn't get a pulse-said I think she is dead. My blood pressure was60/40. Was in semi ICU for 4 days. I had some good RSD Drs. lots of tests. I asked for this hospital. It was the same hospital the RSDSA had their annual meeting at this spring. I attended along with 135 patients. The next day was the medical professionals. They will have a DVD of the two days under their website.
I have had major depression, but therapy and meds have really helped me. I am so grateful for so much. I have different methods of coping I'll share with you. I miss my career too. We have lost a lot financially because of the expense, even though I have good group insurance. Only because we own our own business. But our business has suffered because of my health and now lately the economy.
But something really great has happened. My Dr. just finished a trial study of a drug-to be used at a low dose for fibromyalgia, which I also have. I was no sleeping, the Ambien wasn't working anymore. I went for a long time not getting to sleep until 5-6 a.m.
He put me on low dose seroquel-the drug he had 200 patients on in trial. I started getting 9 hours restorative sleep. It made the world of difference. He cut my anti-anxiety med in half and left the pain med, vicodin, up to me. I went from 6 vicodin to 2 a day. I went from 6mg of lorazepam-anxiety med to 2-3mg. I'm driving again, going to grocery store and errands. I've even gone out to get new coffee jobs. We own commercial office coffee business. Only once, then got the flu. Have a low immune system, so on a good diet and anti-oxidants. vitamins etc. I'm so sorry you lost your career. Please don't give up.
I know the S N S is involved, I'm not sure about the CNS. My guess would be yes. I'll have to ask my Dr. I'm disappointed my my original Dr. and loss of time,I didn't sue any of my Drs. I even fell at an Exxon Station putting air in my tire. The hose recoiled out of the blue and thru me back on my head,neck. Got a ruptured disk, they said they would pay, but I was such a mess, I never turned in any bills. They had given me a claim #. The air hose people were out EARLY the next day and replaced the entire machine. Of course I now have RSD in my neck. This happened in the 4 years I didn't know I had RSD. Today, I would sue EXXON, I have terrible neck pain and headaches.
RSD does spread, but it also goes into remission. I've had remission twice!!!!!!!I'm now in the best place, other than a remission. I'm on 2 vicodin, 2-3mg lorazepam-anxiety
2 blood pressure meds. Seroquel 300 mg. for sleep. I've lost 30 lbs that I gained on Neurotin-Lyrica. Don't have the jerks, violent electric shocks or spasms anymore. I swim, do stretching, exercises. Working on my last 30 lbs.
The anxiety med I really believe in, so does my Dr. it calms the SNS down-so less burning and pain. I'll share some coping skills tomorrow with you. It's almost 10pm and I'm seeing a Dr. for flu tomorrow. There is a good website I learned a lot on. Dr. Hooshmand is now retired but still has his website up. rsdrx.com Under, Puzzles, it's 140 questions by patients and his answers. It's good, although, I'm not sure I agree with his theory on pain meds. We don't get high and I believe by far most of us do not abuse any meds. We do whatever is necessary to function and are responsible. I told my Dr. I appreciate his trust in me. He was so happy for me when I told him I had cut my pain meds down to 2 for most days. I was on 6 a day.
He just built two clinics with HBOT in each of them. I'm going to try that. You can goggle RSD and Hyperbaric Oxygen Chamber.
Take care-you'll find a lot of comfort and support on this forum. So much compassion and we are here to help each other. Your friend, loretta