Went to pain management today, ugh
 

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....:mad:

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. :eek: 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. :confused::confused::confused: 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. :eek: 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?? :eek:
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. :confused: 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.... :mad::confused::mad:

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.

Dear scubaforsythe :)
 

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...:confused:
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 :hug:

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??? :)

:hug:

Two cents
 

[QUOTE Can I just quit? I want off this horrible ride!!!![/QUOTE]
Sorry my friend this is our ride...for now...you answered what I was going to say too...about just RUNNING...even though it is a GREAT idea, when you are in need of that doctor again for something else you don't want to burn that bridge too badly...
I couldn't move my arm over my head for eight months....I tried stretches, windmills, not sleeping on it....etc nothing worked...until my arm was ready...so he's wrong on a lot of things....
sorry too, don;t you just love it when they make you feel like you are wasting their time? And after ALL that work you put into it....sighs...I remember those days....
Keep up the fight...:grouphug:

I wrote a 2 1/2 page report on my procedures and what the results were and the nurse called it a novel. REALLY? 4 years of BS condensed into 2 1/2 pgs to lay it out SIMPLY for them was a NOVEL?
JERKS! I agree RUN< RUN< RUN!!!!!

I agree with Enna on not burning bridges, you do never know if you may need that doctor. But there are graceful ways out of treatment. You can always cancel a procedure saying you need to think it over, discuss with primary, or family, etc. Leave a message for the nurse to please let the doctor know you have decided to hold off. That way you are showing you are communicating and not non-compliant or failing to follow up. This really shouldn't be an issue. If it is then Wow!

On writing out medical history....speaking from the work experience end, right or wrong some doctors and their staff can take this as entrenchment in the illness, overly wrapped up patients, too complicated patients, etc. Etc. Some will immediately cringe, some may find it useful. I do agree it is helpful, especially when there IS a lot of history and the timeline can get confusing. If you decide to write something out (I have done so myself) keep it to bullet points of major diagnoses, injury, surgeries, procedures. Put the Dates and names of whatever it was without any detail. Current meds and dose, Drug allergies, discontinued meds if there were significant side effects. Without detail or subjective thoughts this can generally be done on one page and will be better received. ;)

My personal opinion is that pain management docs often have too many patients and those patients are often high maintenance. If you have an urgent need, the staff will often say go to the ER. I've only been to the ER twice in 12+ years and have had to my doc to squeeze me in due to an urgent issue probably 4-5 times. I will suck it up when at all possible, so if I break down and ask for a little extra attention, I don't want to be treated like I'm a PITA.

The funny thing is, I've had stellate ganglion blocks performed by 3 docs. There can be a huge difference in results based upon how this procedure is performed. I experienced the shortest span of relief from the PM doc.

PM docs have actually become more conservative than some other docs when prescribing pain meds. Why? The DEA is scrutinizing all their patient records very closely. I don't think we should be penalized for PM docs over prescribing opiates to people that had no business ever taking them in the first place. I didn't begin taking serious pain meds until 4 or 5 years after developing CRPS, and I had been offered them probably 6 months after being diagnosed. I'm compliant with a pain contract and have been on the same dosages for years. So, I think I deserve to not be treated like an addict by office staff...

I would question what percentage of their current patients have CRPS.

My last doc, whom I think is wonderful and would go back to in a heartbeat, actually closed his practice and is now working in a PM clinic. (I can't imagine he's allowed major changes in either his care or his staff's handling of patients. But I'm an optimist!) So, obviously I'm making some generalizations based on my own experiences and those of others I've spoken with.

Anyway, I think it's a good idea to try and connect with other CRPS patients and see what options are available to you, within the farthest possible distance you can manage. --My current routine for managing to get to my doc once a month is probably crazy, but receiving excellent care from someone I trust is one of my top priorities.

scubaforsythe
 

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!! :grouphug:

I have been to the Cleveland Clinic and saw Dr. Bruce Vrooman who has worked with Dr. Stanley-Hicks. I am also a Work's Comp case and informed my rep before going to make sure it would be covered. Luckily they said they will approve it because otherwise it would have cost a good amount. I don't know the exact amount they billed but I can imagine it was several hundred. My primary reason was to get more information about ketamine and what I needed to get started. They recommended trying a repeat lumbar sympathetic block ( I had 2 prior one had great results the other not so much) and if that didn't work then I should try a spinal cord stimulator trial. The wait list for the ketamine infusions was over 2 years and that was a year ago so I would assume the list is even longer now.

Also with regards to worker's comp they will not pay for certain treatments. Mine will not cover a stimulator or ketamine. Personally I would recommend consulting a lawyer. I never thought I would need one but I am so happy I have one now. Plus he is also handling my disability case. Good luck! :hug:

Miss Debi beat me to clarification. She also said it much better than I can but I will add my two cents, too.

As Debi said, you are not burning bridges by NOT returning to this doctor. No one said to write him some scathing letter to be put in your file. Cancel any appts. you may have on the books and just do not return. In my area, if you are a patient that has not been seen within the past two years or more, (sometimes less) your file is sent to some mysterious place as if you never existed. I let 2 years lapse between visits with my cardiologist and they said they had NO record of me. I insisted that I had procedures performed by this doc and they said they would get my file out of storage.

Another comment about "burning bridges" on a doctor you might need in the future. Why would you need a doctor like this in the future anyway unless he is the ONLY physician in your area? In some cases, NO doctor might be better than a bad doctor that will cause you more harm. I am not saying this doc is incompetent, I just think you could find someone that would be more appropriate for you.

About your written history........... First, good for YOU. We are told all the time to bring written notes with us so we don't forget to disclose important information. But I can also see this from both sides of the coin.

From many a physician's view point, they don't want to take the time to read it, they want to ask questions for themselves, they don't want to alter their "system", etc. etc. Some may WANT and appreciate your time and effort. Each doc is different and has his/her own way of taking a history.

From the patient's view point, presenting a doc with important history in a written form, ensures no vital or pertinent information will be omitted under the time constraints and stress in the exam room.

You presented the info in the best possible manner if bulleted and concise. That way the doc can scan it quickly, inquire about items he/she feels pertinent, and then further explanation can be discussed.

If you had written a 15 page paragraph style mini-novel, I don't think many docs would be willing to read it during the exam.

You DID the correct thing and the doc should have addressed it in a much better manner.

I stand behind my initial post,.... RUN. This doc is not right for you.

I bring a written recap to my PM doc almost every visit. His PA reviews it with me, types the information into the computer, verbally states it to my doc when he comes into the exam room, and then he gets to ask me questions not already covered by the information I provided. It actually says him a lot of time and it works well for us both. My PM doc acts like a team with me, not as a dictator. He LISTENS first and then we discuss options.

I sure hope you find someone else quickly that will be of HELP to you. I don't think the doctor you saw is the one to help you.

My PCP thinks very highly of the Cleveland Clinic. He sends a lot of patient information to them for their opinion. And he (my PCP) is no where near Ohio.

I am sorry if I implied I wasn't happy with the clinic because I was very happy with them. It helped my comp case too because they agreed with the CRPS diagnosis that my doctors had given me but the comp doctor disagreed with. Everyone I encountered there during the appointment was wonderful.

If you are interested in the ketamine treatment the only doctor who does them is Dr Bruce Vrooman. The first appointment I made was with a different physician and I had to call again and change my appointment to Dr Vrooman. Also make sure you give yourself enough time to get you med records sent to the office. They review your chart before your appointment and this helps to give them a clear picture. I am sure there has to be a way you can get all the information you have sent to them prior as well. Personally I would try very hard to do this because they do not have enough time to review the information during your appointment. They aren't bad doctors that don't care they just only have a limited amount of time to spend with each patients.

Hope this helps!

Hi NurseKris,

Sorry MY post may have seemed in response to yours but it was not. The original poster had asked what we (NT members) thought of the Cleveland Clinic.

I have no personal experience with them and was just saying that my primary care doctor seems to think highly of them. He sends some lab results to them for their opinion on some of his patients so he must think they are OK.

Since I could not give any personal experience info about Cleveland Clinic, I thought it might be helpful if the poster knew my PCP thinks highly of them.

Sorry for any mis-understandings.

No problem. That is one of the more difficult thing about communication over the internet. I just wasn't sure if I worded it wrong. You think with all the technology we would have a clearer way of expressing ourselves.

Thank you all, I have also discussed this extensively with my boyfriend and he agrees that I need to talk to someone else, and I think he wants to be there when I go. I will be calling tomorrow to see if I can get an appointment. :)

Thank you all :grouphug:

Lost the art of it
 

Hi Nurse Kris,

In younger years, I was much more proficient with expressing things in writing but with age and medical issues, I have lost the art of communication, including verbally but especially in the written word. I am going to blame it on my meds. Yep, that is a good excuse for me. That may not be a "valid" excuse, but it is the one I am going with anyway. We won't mention the aging factor at all. ;) And to blame my meds is a far fetch as none of them should be having any effect on my mental acuity. Let me think of another excuse. Pain, yep, that works, too. Can't think straight with pain as many here can attest to in their life as well.

Have a good day and thanks for allowing me to get silly. Was good to chat with you in this thread.

"He told me if that helps, then I have RSD/CRPS, if it doesn't, then I probably don't."
WHAT??? He's crazy! How much longer do we have to be abused by these losers???
Also...PLEASE...for anyone taking Lyrica and/or Neurontin and you feel it's best for YOU, I am not a doctor and I am not trying to tell anyone what to do. I can't take either one and was shocked to find things in the news about these 2 drugs.

Neurontin aka Gabapentin

http://www.fiercepharma.com/story/pf...45m/2014-06-02

Lyrica aka Pregabalin

http://nationalpainreport.com/lyrica...n-8825316.html

http://www.biopharmadive.com/news/pf...r-pain/353418/

I had serious effects from lyrica too. I couldn't remember words, I couldn't form complete sentences. I had the other effects as well ; high, lack of concentration, weird feeling like I wasn't present but not being able to complete sentences really freaked me out. It took a couple weeks to even realize it was the lyrica. I thought I had had some mini stroke or something! I only took it a few weeks and after a year, I still think I have residual issues with words and weird feeling.

Also, that dr you went to is ignorant and has no desire to help you. If he doesn't believe in crps, there is no way he can help you.

Good luck. I know the process getting a new dr is difficult but you have to advocate for yourself. No one else will, even if they say it's their job to be your advocate... It's a lie.

My pm doctor posted up on worker comp his notes, and I find them rather funny. He says the NEER impingement test is positive on my right shoulder. I told him, I can move my arm it was just hurting that day really badly due to try to get my daughter into her corseted prom dress, and lifting it was really painful. He said that clinically this does not seem to be RSD, he strongly believes there is a strong psychosocial component to my pain.... What the heck!!!?????:eek::mad:

My brain is not processing this. IS he telling me that I'm afraid to use my arm and that is why it hurts???? I'm so ticked off I can't even think straight!!!! gr gr gr gr gr

Any idea's on why he would think this? Or what he could possibly mean???

Something I found when I looked up what he said....

http://ptjournal.apta.org/content/91/5/700.full#sec-18