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.

these are great guys!

and finz... i guess how many tests were done to find out the cause of the pain... cause if they start with one idea of what the dx is... then change their mind cause they don't see any evidence then move on to another idea... i want to know how many tests over all were done until they came up with RSD.

1. How long did it take to get a dx? how many docs?
12 doctors in 6 monthes

2. have you ever been denied treatment?
yes. i was turned down for lumber blocks by my insurance.

3. Been told its in your head/making it up... etc? by family, friends or doctors?
worse, i have been called a slacker and a faker by my clasemates, kids i grew up with.

4. Been called a drug seeker/addict?
honestly no, because i dont take the meds... too stubborn

5. Not been believed at the ER?
-left the ER in more pain then when you arrived?
no. again too stubborn to go.. and i wouldnt have anyone to take me anyway...

6. Felt you were alone at least once since getting the dx?[/QUOTE]
all the time. everyday. even before i got RSD i was alone. after RSD it just got worse. especially trying to get foster parents to bring me to a doc

1. How long did it take to get a dx? how many docs?
(5 months for dx, 4 doctors)

2. have you ever been denied treatment?
(YES)


3. Been told its in your head/making it up... etc? by family, friends or doctors?
(Yes a cardiologist told me I invented RSD)

4. Been called a drug seeker/addict?
(Yes same doc during an angiogram)

5. Not been believed at the ER? (No)
-left the ER in more pain then when you arrived? (Yes)

6. Felt you were alone at least once since getting the dx? (Yes)

YES!. Very alone.

Not sure if i'm too late here Andrea but thought i'd fill in your survey just in case it might help with your speech !


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

It took me 4 months to get diagnosed which I guess is fairly lucky compared to how long most people have to wait. I was lucky to find an Orthopaedic Surgeon who knew what RSD was and recognised it however I saw about 30 different doctors before and during diagnosis and went to 4 different hospitals.

2. have you ever been denied treatment?

Because I am under 17, the UK's NHS (National Health Service) often denies treatment due to my age however I am lucky to now have a doctor who is supportive and fights really hard to get me any medications he thinks may help.

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

Oh yeah. Most of my family except my mum think that I am faking things which hurts soo bad! Even my own dad has accused me of making things up and has only been to the hospital twice in the last 3 years I have had RSD. I've lost friends because of my illness and even had to move schools and have home tuition because of it.

4. Been called a drug seeker/addict?

Not neccasarily however people have thought I was making things up (see above)

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

I haven't really been to the ER that many times since I have being diagnosed as my Pain Management Doctor usually gets me an emergency appt when things get really bad however before diagnosis I was told that there was obviously a problem but that it wasn't as bad as I thought and that I just had to learn to deal with it.


6. Felt you were alone at least once since getting the dx?

Oh yeah. Most of my friends and family have left me so it's really frustrating. I've been depressed lots of times because of it. I just wish people could understand half of what I and others with RSD go through then they'd be more understanding.

1: I had a doctor within 2 weeks after the accident that knew I had nerve damage and RSD. Chief orthopedic doctor for State of MO Orthopedics.

2: I was only denied treatment while I was under Workers Comp care but as soon as I was released, I've never had one single problem since then.

3: I've never been told it was in my head. There was more than enough physical evidence to back up the doctor's findings at each step along the way.

4: I've never been called a drug seeker, in fact my doctors are usually worried that I should be taking even more, but I'm the one choosing to keep things where they are. Addiction has never once been brought up by any of my medical staff.

5: I've never gone to the ER except over infections. The few times I have gone to the ER, I've always been admitted and then screamed at by some doctor for not getting there sooner. I've always thought people run to the ER to much, so I sort of go the opposite direction and no matter how bad it gets, I never go. It's only after being ordered to the ER after seeing my doctor in his office that I've usually gone. Since I was always checked in, I guess you'd say I was in better shape when I left, but I've never once gone to the ER over pain alone.

6: No, I've never felt alone once. I'm amazed at the quality of care I'm so blessed to get. I've never been told it's in my head because it isn't and my body is more than happy to prove it. While there are always some rather rough days, I can't say it's because others didn't/don't care. but I've been known to not care about myself and this disease more than once - daily.

The only area I ever had problems was with Worker's Comp and while I under their care while they sent me to a total of 9 doctors. The problem was, their own doctors would tell WC I'm screwed and that the damage is getting worse. Since WC didn't want to hear that report, they'd then send me to another doctor. Once I got the no further improvement report, I then started with a primary, specialist for RSD and a pain doctor who I've been with for 11 years now and they're just the finest men I know. Their kindness astounds me and without them I wouldn't be alive today so I owe them a lot. I wake up every morning amazed for my blessings that I'll never really feel I deserve but that I'm eternally thankful for even though my crushed nerves and RSD has changed my life in ways I never could have dreamed possible.

I woke up with a pulse - from here it's pure gravy. Best of luck as you get your info together. Bob.