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Originally Posted by Jennelle
Hi everyone my name is Jennelle and I am new to this and a little lost. I go to untold amount of therapy and doctors but have a hard time finding the right kind of doctor that knows enough to help. My pain person actually seems to know the most, the others say they treat RSD but pass the buck to other doctors for treatment. What Dr. do you all see? To make it worse I am at the whim of my L&I people to get treatment. 4 Dr have recommended a sympothectomy... anyone else had this or a spinal nerve stimulator placed? If so please let me know what the experience was like. L&I won't pay for either- I have had 6 nerve blocks and they helped at first but now only for a couple of hours. PT and OT have dropped me until I get the surgery that was denied, I can't get L&I to pay for message so I do home programs...any ideas? Please, please, any help as to find a doctor that knows what to do? I feel like my life is on hold from my wedding (supposed to happen last year) and starting a family (other than my 3 soon to be step-kids). HElP!!!! Thanks so much finding you all has made me feel so less alone!
Jennelle
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Hello Jennelle,
Welcome, you will find a lot of knowlegable people here who are helpful and care.
It takes a great deal of time to find and assemble a medical team that you trust. Most doctors have heard of RSD and know enough to know it's complex and the same treatment plan doesn't work for any two people. We all have different nervous systems and RSD acts different for each one of us. Doctors are intimidated by it, after all they are in the business of helping people and this condition makes it hard to help you. I have a PM doc, chiropractor, pain management doc, physcologist, allergist (without medication my body itches out of control wherever pressure is applied) cardiologist (RSD effects my heart rate a very very small % of open heart patient get RSD)
I went through 17 doctors over an 8 year period.
So your medical team will have many doctors on it who should understand RSD.
I read somewhere early in my DX (I have only had RSD for 8 years)
Just as patients get frustrated with doctors because they can't help, doctors get frustrated with a patients health and their inability to treat them. My GP doc. gave me the never quit never give up speech. Several months later I was having trouble with my meds working together. He walked in the room the first thing he said is "I'm through we aren't doing this anymore". I left the office in tears because, up to that point, I really liked his approach with my health. After I cooled off I went home and wrote him a letter. Telling him he couldn't give up on me and he couldn't quit. I reminded him of his pep talk with me the first time he saw me. He called me after he read the letter. We laid out our expectations and agreed he was having a bad day that day. He has been treating me for the last 6 years .I have also had disappointing appointments with my pain management doctor. Keep the communication lines open. That's what it takes in any relationship and that's what is really needed when you are living with and trying to get help managing a complex health conditon like we all have.
I had a SCS for 2 1/2 years. It stimulated my arms, legs and low back (I have full body RSD). The programmers from the the manufacture couldn't get it programmed. Ask for it to be explained to you how they program it and how many hundreds of combinations there are. The last year and 1/2 it was in I didn't even have it turned on. I was having awful low back pain and all my doctors agreed it should come out. My low back pain has improved since it was removed.
Sorry to ramble so, I hope you get some information from us that you can talk with your doctors about.
Take care,:grouphug
Sherrie