Went to my first appointment for pain management today, was a nervous wreck. I spent 2 days preparing a 3 page document explaining my medical history, what they think caused the CRPS, what meds I have been on since the dog attack, and what I'm currently taking. Listed what seems to make the pain worse, and it affects me, and what I do to try and cope with the pain. I thought the doctor would appreciate this, and really took my time doing it, so I would not forget anything important. They wanted nothing to do with it....

When the nurse asked me what kind of pain do I feel, I looked at her stupidly, and said I'm not sure what you mean. She said, "Is it stabbing, aching, burning, radiating..." I told her all the above. I tried to explain that it changes depending on time of day and what I have done or what I am doing. She said that is too many words that I need to pick two, because the doctor would get mad if she put in too many words. The nurse continued with questions, interrupting my answers, allowing me only to speak a few words at a time, so I do not think they have accurate information. I'm so out of it most of the time, I cannot think quickly enough for the speed she wanted me to go at.

The doctor came in and was very rude and interruptive, like I was wasting his time. He was not interested in hearing about what my symptoms were or what was bothering me, and basically told me because I have trouble raising my arm above my head, (I explained to him that I was hurting pretty bad today and did not think I could raise it and that it was not because it wouldn't raise, it hurt too much to raise it) he said it is not RSD, that because I do not have ROM, it is not RSD. I have been told by other doctors that lack of range of motion is a symptom of RSD, not a way to exclude it?? Thoughts???

I explained that because I had a stroke at age 7, my right side compensates for the left, and I have to reach around in awkward positions to do normal things like pulling my pants up, washing, putting on deodorant... and when doing these awkward movements it hurts my arm more, and its like building blocks that build up throughout the day. Depending on how many blocks build up, decides how bad the pain is at night. He asked me what the pain was like at night. I told him it starts around 9:00-9:30 and feels like a pool of lava that flows down my arm into my hand. He asked me where does it start. I told him at the shoulder, then flows down the arm. He asked how it moves down my arm. I got really confused at this point, and felt like it was more of an inquisition rather than him trying to understand, but I then switched and said it feels like someone is pouring lighter fluid into my arm and setting a match to it, it flows through the entire arm. This seemed to make him angry. That's when he told me to lift my arms...

I had trouble putting my hands palm up, my left hand, because it is paralyzed, and tried to explain this, and he even interrupted me during this and said ah your wrist is frozen huh. I was like no its paralyzed from the stroke I told you about...

So at this point he decides it is not RSD/CRPS and that it is just that my shoulder is messed up. I tried to explain that I had manipulation done last week to alleviate the impingement, and my ortho says the shoulder is fine. I also tried to explain that workers comp had sent me to a separate doctor to see if I had RSD/CRPS or not, which he did, before they would approve adding it to my case, and I don't see how both doctors could be wrong??
I don't think he liked me saying that but by this point I was ready to blow.

He decided that my gabapentin 100mg 3 times a day was too weak, and he prescribed lyrica 75mg 2 times a day twice a day in 2 weeks, this would increase to 2 pills t. I tried to ask what the difference was, (they will both end up being 300mg a day) and all he told me was lyrica was newer, so it is better. I asked what the side effects are, they said about the same as gabapentin. AND he scheduled me for a stellate ganglion block.

He told me if that helps, then I have RSD/CRPS, if it doesn't, then I probably don't. Then in the next breath he said, it does not always work on everyone, so we will have to see....

I looked into this block and I have read that after 6 months or so a sympathetic block has less chance of working. I most likely have had this, which I do believe I have this, and have had this since the dog tried to pull my arm off a year ago, and the tears to my shoulder hid the symptoms and it wasn't until after the surgery that they were discovered and addressed.

Can I just quit? I want off this horrible ride!!!!

I was just about to post and ask what to expect for my first pain management appointment. This is what I'm afraid of.
I am so sorry it went this way for you!

I am so sorry you had such an awful experience with the pain mgt. doc. They are not ALL like that. I was very fortunate to be sent to a fabulous pain mgt. doc and have been seeing him for several years and just adore him.

My "gut" reaction to your post is RUN, don't walk, away from this doc. Find someone else that will listen to you and treat you appropriately and with respect.

So sorry you had this experience.

My friend Hopeless is totally correct.

RUN and never go back.

I also have a wonderful pain mgmt. dr that I've been seeing since last Sept. I actually just looked through the internet and found him. He looked like he would be a nice person/dr.....lol....crazy but it worked. His staff is awesome too and makes the visit so easy.

If you have someone you can take with you that helps. Someone that will help you explain and confirm what you are going through. And that can take notes.

So please don't give up...it took me a year and 3 dr's urging me to go to pain mgmt. before I gave in. I was terrified of the so called 'pill mills' but my pain mgmt. office is the furthest thing from that.

Wishing you the best and please keep us posted....we care about you !

Debi from Georgia

Hi there,

Hopeless and Debi hit the nail on the head - RUN!!!. I thought I was reading about a Neuro, not PM Team. Mine, across the Pond, is headed by the most wonderful Consultant Anaesthetist, who understands pain. Perhaps you should have doused this one in lighter fluid and set fire to his arm so he could truly appreciate your suffering.

They are not all like this, go find yourself a new one who will pay attention to ALL of your history.

Dave.

Thank you all, yes I want to run, but unfortunately will need to get approval from workers comp first. Which I wish I would not have taken the lyrica he gave me, I feel horrible and can barely even move my arms...
Has anyone else ever felt this from 75mg of lyrica? I feel very high, have to concentrate to move my body, and am looking at myself like its not me? My hands are shaking, and am so thirsty...
But yet while I sit here my back of shoulder is stinging where I'm sitting on couch to type this...
maybe I just need to sleep it off, feel kind of drunk. don't like this...

Ugh, so sorry you had to go through this. It is so frustrating going to a new doctor, giving your whole schpiel and having it be a negative experience.

I am concerned about the block you have scheduled. At a minimum, whether we like our doctors or not, we have to have confidence in them. You gave many reasons for questioning this doctor so letting him do a block on you sounds like no good. God forbid it doesn't go as planned like some recent posters and you have odd pains and need to call the office for anything.

I also have issues with two things you brought up. The ROM criteria, not everyone has all CRPS symptoms or presents with them all the time. And the block, not responding to a block doesn't mean you don't have CRPS. You've probably seen this in your reading on them. It just means your pain is not sympathetically mediated which is not mandatory for CRPS and even then placement is important. There is a lot of controversy over these blocks with percentages as low as 30% for responders.

There are so many reasons to get out of there. Don't let this doctor and his clinical opinion affect your records any more than necessary. If he does a block and puts whatever his judgement of the outcome is does that affect your case? Blech, the whole thing is maddening.

Sending Healing Love, Littlepaw

I am waiting to hear back from the ortho doc's worker's comp person to see if they have the paperwork sent in to take me off work. I had to fight with the
ortho doc just to get him to do this while I'm in therapy and going through pain management. He said he thought pain management should do this. Well since this guy doesn't think it is RSD, he said ortho should do it, I could be majorly screwed here.... if the ortho doesn't do what he said he would. I know I am so out of it at the moment because of the medicine I can't even walk a straight line, and am even having trouble speaking... How would a person work like this???

The doc said my lack of range of motion tells him I do not have RSD... Which I was under the impression that it was one of the main criteria for it. Am I wrong?
Oh and the fact I sleep only 2-4 hours, he said I would have to go to a sleep specialist, he says I have sleep apnea, even though I told him I hurt so bad at night I cant sleep.

I am thinking about talking to someone at the Cleveland clinic, does anyone know a good doc there, it is not too far away and would be willing to travel to get the help, if it is a good doctor???

Just want to clarify that I don't think anyone on here that said to 'RUN' meant for you to 'burn any bridges'.....honestly this dr won't remember if you never appear before him again.

Canceling appointments is no biggie and once you have approval from workman's comp to move on to another pain dr you should be set. In the meantime do some research on other pain dr's in the area and as said by other posters try to find out if they treat your condition. Usually the conditions each office treats is listed on their website.

Good Luck

I don't see why you can't titrate down off the Lyrica and add back the gabapentin. Actually I was switched from one to the other without titrating off...this was done by my neuro.....for some reason they seem to be interchangeable. Anyone ?

Debi from Georgia

I have never in my life taken something that knocked me for such a loop without knocking me out (couldn't sleep, and I tried), and for it to last all day!! wow, I don't like being high and that is how I felt all day!! and not a good high.... (if there is such a thing)

The pain doc did not give me anything other than the lyrica for pain, and honestly even though I was stoned out of my mind if I paid attention I felt the pain. So I'm not so sure how good it is for it. I'm dreading taking it tonight...

My three page of notes, were bullet points, and very limited to only facts. I just have a somewhat extensive history, starting with a stroke at age 7, so you can guess how unlucky I have been . And since I have trouble speaking sometimes, and more so now I don't get sleep, I included things I do to try and cope, what has worked and what does not.

I'm seriously looking at the Cleveland Clinic, does anyone know anything about them, maybe personally been there?

thank you all!!