Hi Babs, I am so very sorry you are going thru this dreadful disorder, and have the added burden of dealing with WC and no support.
WC has a legal duty to care for your medical expenses, loss of work, counseling, retraining, and your legal expenses if they don't follow thru. They are legally responsible for your increased spread and your worse outcome due to neglect of their duties in a timely manner. I'm not an attorney, nor is my case a WC. My daughter is a court reporter. I don't know what state you are in, but generally a person has 2 years from the diagnosis to file a legal complaint. There are WC Specialty Attorneys that accept their fee, which is usually a percentage at the end of the legal mess. States are different so if you go the legal route to get the wc and doctors moving , you would need to check with them.
You are so right-this is a life altering disaster in our lives. And we do need to go thru the grieving process. I lost my parents early and went thru 2 plus years of weekly counseling.
As for myself, it's been 15 years. Immediately following surgery, I got swollen arm and frozen shoulder. But I didn't get a diagnosis for 4 years. I had private insurance and went thru 100 physical therapy treatments to get my range of motion back and did 100 massage treatments prior to pt out of pocket. I went into remission for over a year. They therapist told me it might,likely, would go to the opposite shoulder. I thought that sounded strange, but we were moving from Oregon to Arizona. Sure enough, I got frozen shoulder in the right side. more pt and massage therapy. Then another remission.
Then while water skiing, I felt a nerve pull in my left hand. The Dr. said rheumatoid arthritis, because my fingers were swollen and frozen straight. The tests said NO RA. He said tests aren't always correct. I decided to go back to Oregon and see a Ortho Sports Injury Group -Hand Specialist.
The Tract & Field Olympic Trials were held there. It's a Sports Capital with lots of good Drs. In one minute the Doc said RSD. Send me to hospital nuclear med dept. and confirmed. He ordered a Tens Unit, which helped me. and started me in physical therapy next day. When I came back to Arizona, I found a neuro-more tests confirmed-and hand ortho who confirmed and had his own physical therapy group who were experienced in RSD. Besides pt on my hand, they did desentization. I also did it at home every day. I took about 5-6 plastic bowls and put cotton balls in one, rice in another, pieces of fabric in another, sand or coffee grounds in another, beans, and run my hands or feet in them. We are so sensitive to touch, doing this every day helps overcome the sensitivity. Because I had misdiagnosis and delay of treatment, I only got 50% of range of motion on my left hand, but I'm thankful I can cut my own food again, button buttons, and zip my clothes etc. I know have full body, generalized, but mobile in all limbs except the left hand. A couple years ago my toes started curling off the floor. My RSD Dr. had me in the pool every day doing counter exercises. 4 months later my toes were flat , touching the floor again.
We don't know where you have RSD.
One website with lots of good information is rsd.rx Dr. hooshmand from Florida is retired, but kept his website up. Go to Puzzles and there are 146 puzzles or really questions with his answers regarding RSD. Good information. I'm not sure where the other site our friend was talking about, but RSDSA is the national organization and has excellent information. I attended their annual convention last year in my home town. If you go to RSDSA and put in your zip code, you will get a phone number and contact name for the nearest support group. Ours is held once a month. Jim Broatch can also give you a list of Drs. closest to you. The Cleveland Clinic has an excellent RSD center.
When I was diagnosed full body (and internally) my neuro recommended counseling. I didn't like the two psychiatrist he referred me to and I really did like him, so I looked in yellow pages and found a gem of a Dr. He had moved here from New York Cornell Hospital. He is a neurologist, psychiatrist, and pharmacologist. He also teaches and does trial studies. He just built two clinics with HBOT in both of them. HBOT stimulates circulation. I'm saving to have the treatments this summer.
A woman was driving on the freeway in Phoenix and two other cars collided. They ran into a metal fence and one of the metal poles became a missle and went thru her windshield and took off part of her finger and arm and pinned her shoulder to the back of the seat. They saved her arm and most of hand with 18 operations, but she got frozen shoulder. Her neurologist called my neurologist and asked if he would take her as his patient and do the HBOT treatments on her. My Dr. did 9 treatments and she was waiving at the TV Crew that came to the clinic to report on her amazing progress. Remember it took me 100 pt treatments for frozen shoulder.
I'm going Private Message you with my phone number, should you like to call. My time zone is 1 hour ahead of west coast and 2 hours behind the east coast. I'm not mechanical, my phone has unlimited texting, but I haven't learned to do it yet. My daughter is going to show me. I have Verizon.
You definetly need meds. Just sleeping a restful sleep, lowers your pain level and anxiety level. There are meds that work well on nerve pain. My Dr. is conservative, but I like that. I have a window of time I can drive and do errands.Driving with opiates can put you in jail and injure yourself or others.
Water therapy needs to be 86 degrees and you don't want to get in a hot tub that is 104 degrees. Ice is a no no and so is cold water. I got the 86 degree off the RSDSA web site. RSD on the McGill Pain scale of 1-50 is rated 46--- higher than amputation and child birth. That is on the RSDSA
Repressed anger is anger turned inward and deepens depression. I was told that by a counselor. Depression is part of RSD, because RSD affects the Limbic part of the brain that controls those emotions, short term memory, why we are talking to someone, then forget a work, or can't finish what we were ging to say. RSD is an autonomic disorder, which means the involuntary organis are involved, like the heart , lungs, kidneys. The sympathetic Nervous System controls our blood pressure, circulation, immune system. the para sympathetic nervous system causes low blood pressure which can cause us to pass out, that has happened to me once. I was out a long time and in the hospital 4 days. Do you have involuntary spasms, jerks electric jolts?
If you aren't getting the kind of medical care you need and deserve , you could call the local support group and see what is available near you. or call a larger city support group where they have a teaching hospital or mayo clinic. Like we have two mayo clinics here. This is where 5-6 Drs. did the ketamine studies a few years ago, at one of the mayos. Two of the Drs. are practicing in Philly.
Again, welcome, you find so many wonderful friends here, with kindness and comfort, very supportive. Take care, one of your new friends, loretta with soft hugs