Hi mommzpeachy and welcome back,
I''m so very sorry you are going thru all this pain and frustration of being passed from Dr. to Dr. I got RSD following breast surgery, and it was 4 years before I was diagnosed.Following the surgery, my arm swelled up and became immobile, frozen shoulder. The breast surgeon partner withdrew fluid in huge amounts. It was lime green. Of course no one mentioned that meant INFECTION> Sent me to a rehab Dr. and said I'd need a few physical therapy treatments. Well , after 100 treatments and 100 massage therapy, I got the use of my arm back. They told me, don't be surprised if you get frozen shoulder in the other arm. Well we moved from Oregon to Arizona, and I got frozen shoulder in the right arm. More therapy, got my arm back. Was OK for a few months. I was water skiing all summer and then in Sept. I felt a nerve pull in left hand. It became frozen straight. The Dr. said I had Rheumatoid Arthrisit. I was misdiagnosed, but knew I didn't have rheumatoid arthritis. My left hand was curling up . I flew back to Oregon and went to a sports injury group, the hand specialist. He diagnosed me in 1 minute. Sent me to hospital for nuclear med test, confirmed. Ordered a Ten's Unit and started me in physical therapy. I came back to Arizona and found a good neurologist, more tests, and meds. Saw a Hand specialist, confirmed rsd, and started physical therapy and desensitization. Because of the delay of treatment my hand is permanently curled like a claw. But I'm grateful because of the desensitization, I can use my left hand again, I can cut up my food, I can peel potatoes, zip my zipper, button buttons.They had me do the desensitization every day at home. Take about 6-7 plastic bowls. Fill one with cotton balls, another with soft coffee grounds, one with rice, one with popcorn, The different textures are good -run you fingers, toes thru the bowls. You can put fabric also in the bowls. Doing this over and over gets your limbs to desensitize. Massage therapy was painful, but very good for me. Physical therapy was likewise painful, I took pain med before going each time. My daughter would drive me, and I would get the massage therapy first, I paid for that, and that loosened my body up and then would get the p.t.
Swimming has been one of the best things too. The water needs to be at least 86 degrees. My toes started curling up off the floor, My Dr. had me swim every day and curl my toes, and after about 4-5 months, my toes touched the floor again. You can also do this in the bathtub, but swimming keeps you mobile.
To help with the never ending pain, I used distraction, Movied, comedy, music, scented candles, bio-feedback, massage therapy, essential oils, swimming, floor stretching, meditation, prayer, visualization, journaling. Journaling is a wonderful way to release your feelings, I think counseling is extremely important. WC should pay for it. I went thru 2 years when my partents died-pre rsd. Then when I got diagnosed full body, the neurologist suggested I see a psychiatrist. to help me cope with this life alterning monster. I didn't like the two people he suggested, so I found my Dr. in yellow pages.!!!Can you believe that. I have been seeing him 5 years. once a month. He doesn't take insurance but he has hel[ed me so much the $ is worth it.
RSD is an autonomic disorder. That means it effects involuntary organs, like the heart, lungs, kidneys, bladder. It affects our circulation, We can have both hot and cold symptoms. We can have the burning pain high blood pressure caused by the sympathetic nervous system. The para sympathetic nervous system causes low blood pressure and deep cold bone pain. I bought a $30 blood pressure kit to keep an eye on my pressure. I woke up one morning and passed out-an hour and half, by husband thinks-He was upstairs in his office. When I woke up, i couldn't get up so crawled on the floor till I got to the door and banged on the door. I asked him to call 911-4 times he was in shock. The ambulance came and paramedic said he thought I was dead. My pressure was 90/40
Spent 4 days in semi-ICU. My Dr. said it's likely to happen again.
I was on 3200 mg. of neurotin for years, then switched to Lyrica. For me, the Lyrica worked better for pain. Last October, I asked my Dr. if I could go slowly off, I'm am doing real well off the Lyrica. I was so foggy in the brain. Still have short term memory problems and grasping for words, while talking. I had gained 60 lbs on neurotin, and lost 30 lbs already and going for the 2nd 30 lbs. I know that's not healthy either-the weight.
I rarely have a spasms now, or electric shock etc.
I take 120 mg. of cymbalta, two blood pressure meds, Toprol xl 50 mg. and diovan 160 mg.5 weeks ago I stopped taking Ambien cr It stopped helping me sleep. I laid awake all night for weeks till about 5-6 a.m. My Dr. switched me to seroquel. Normally it's used for bi-polar, which I don't have or schezophrenia which is spelled wrong and I don't have that either. My Dr. is just finishing a 200 person study on low dose seroquel for sleep. With restorative sleep, pain levels drop, I saw my Dr. today and he allowed me to reduce two meds as I saw fit. Because of the good sleep, my pain level dropped and so did my anxiety med. I went from 6 vicodin a day to 3. I went from 6 mg. of lorazepam, an anti-anxiety to 2 mg. of lorazepam. I feel so much better, I still burn some, but nothing like before. He is about ready to publish report on seroquel for the pharmaceutical company.
Please don't give up, You just need the right amount of drugs. We are all different as to what works well for us. This is so complex, it takes Drs. time to figure it out.
The Ketamine study was done here in Scottsdale AZ at the mayo clinic. One of my good friends assisted Dr. Swartzman, Harbut, Correll and others.
My Dr. just built two clinics and put HBOT in them. That is what I'm going to try, as soon as I built our business back up, from the economic disaster. Insurance doesn't pay for HBOT and it's spendy. I didn't sue my Dr. so, everything comes out of pocket or private insurance.
I'm glad you don't have depression. That's wonderful. I'm going to buy Michael J Fox's book, "Always Looking UP"
I'm 61 and have a caring husband, and wonderful married daughter and son in law. They have been married for 9 years. She is a court reporter and her hubby is an commercial airline pilot. They have a min pin doggie, named Roxy and we have a main coon cat named Sabrina. My daughter & hubby moved to Chicago for the airlines for 15 months and then came back. They are living with us for a while. We love it.I think they are going to stay another couple months, but I wish they would stay longer. Our house is big and they have lots of privacy. Laura had a RSD case=deposition pre-trial. The Dr. didn't tell this lady, she could get RSD from the surgery he was going to perform on her.
If you would like to give me your phone number, I'd be happy to call you. Thru the Private Message. Take care of yourself.