Andrea,

I have a question.....Do you mean how many tests were done to dx the RSD ? Or how many other tests to dx the 'supposed' problem which turned out to be RSD ?

For instance, my cervical MRI's were to look for herniated discs to explain my neck pain, not to see RSD in my neck


1. How long did it take to get a dx? how many docs?

>>>> Almost 4 years. Docs 'treating' me = 8, plus 2 chiro's, 2 IME docs, and 1 ER doc



2. have you ever been denied treatment?

>>>> Do you mean denied or not offered ? Denied recommended tx by WC, many times. Several docs din't specifically deny treatments, they just didn't offer them

3. Been told its in your head/making it up... etc? by family, friends or doctors?

>>>> All of the above !

4. Been called a drug seeker/addict?

>>>> Not directly, but it's been implied several times.....including being told "I'm not giving you narcotics for this" because I was crying in pain during a first visit to the pain clinic right as I entered the room, before any exam/history was done. Unbeknowst to that doc, I was already on narcotics, prescribed by my primary who referred me to the pain clinic for help with dx'ing the problem, not for medication management.

>>>> Yelled at over the phone by covering doc who called back in the evening after I spoke to the office staff repeatedly during the day and they assured me the issue would be taken care of. I was on Vicodin 7.5/750 mg written for every 4 hours prn. I normally only took 1 or 2 a day, but for 2 days I was in a horrfiic flare and desperately needed them every 4 hours. Taking them every 4 hours resulted in an acetaminaphen intake of 4500mg per day, over the recommended 4000 mg limit. The doctor's office was supposed to call the pharmacy about plain hydrocodone or oxycodone. I had plenty of pills, I wanted some without the acetaminophen in it from my primary. I did not ask the covering doc for meds, I asked what I should do overnight because my primary had failed to call it in. Is there just a potential for liver failure over 4000mg/24 hours of acetaminophen or would it most likely happen after 2 days of it ? (I had already had the 4500 mg the day before) She screamed at me for 'asking for narcotics' on the off shift and told me to go to the ER.

The next morning, my primary doc called me at 7 am , not to apologize for the screw up, but to reprimand me for calling and 'asking for narcotics' on the off shift. He is no longer my primary care doctor.

5. Not been believed at the ER?
-left the ER in more pain then when you arrived?

>>>> I've only been to the ER once for a pain issue. My problem was that I had a pain flare and had to use my Vicodin (7.5/750mg) every 4 hours (as it was written) during a 2 day pain flare. That put me over the recommended 4000 mg acetaminophen daily limit. I was very nervous about going to the ER because I did not want to be accused of being a drug seeker. I took plenty of my Vicodin with me to offer to trade for some without the acetaminophen in it. The ER doc gently laughed and explained that they can't do 'trade-ins' and he empathized that chronic pain patients have a difficult time when doctors and ER staff make assumptions about them. He did that while writing out a script for some oxycodone with no acetaminophen, told me which 24 hour pharmacy to take it to and had the nurse call to make sure it was in stock. I wish that doctor was available to do primary care.

6. Felt you were alone at least once since getting the dx?[/QUOTE]

>>>>For the first few years, most of the time. Finding the forums at Braintalk and now Neurotalk literally saved my life.