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Old 03-23-2011, 05:58 AM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
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I have the diagnosis of CRPS...but it seems like everytime I see someone new it is always like they have to reconfirm that I have CRPS. 4 times I have gone through this and the new PM I am seeing sort of seemed like she was going to do the same thing but with all my other symptoms from this new thing she didn't really want to do anything with my ankle right now and since I am on the meds that helped me before I'm not as worried about the CRPS right now (it won't kill me). So to answer your question...you will often have people douubt you on the CRPS diagnosis.

As to the other stuff...while I am inclined to think that you should ask to see someone else...I also want to share my experience with my first PM doc.

He was the one who diagnosed me (and almost immediately with all my symptoms). After seeing doc after doc after doc who had no answers...he gives me this and as soon as I look into it and do some research it's like finally...an answer. Not a good one since it sort of sucks and all...but the truth and finally I know I am not going crazy. He gets me into PT and he gets me on the right meds. And for that I had 9 months of function (pain still at a 6 but I was able to get my life back). I was able to go back to work...even take a trip to Disney World.

But he was rough on me emotionally at times. He told me I just needed to walk. I needed to just do it and push through. He would almost yell at me and tell me to, "WALK NORMAL!" I got really frustrated with him for that. He told me to quit my job because it was only going to cause me stress (work related injury caused the CRPS and work comp was a pain). I didn't like that advice. He made numerous comments about my boyfriend and me not being married. He made a comment about me not falling after I had my first block with him because I would probably sue the hospital. I didn't like any of it...but I needed him to be a little rough with me to get me to walk normally. I read some stories on the internet about people who got their lives back by pushing through. And I think he tried to rile me up on purpose with the other stuff. It gave me the ability to stand up for what I wanted...with work, the boyfriend, and my life. I wanted to get my life back and I did. I wanted to go back to work because I love my job and I did. And I like the way things are with my boyfriend. I told him all this and I was happy. So even though he was rough and pushy...it gave me the backbone I needed to get where I needed to be emotionally to handle this.

Not saying that's what YOUR doc is doing...but while I was dealing with the doctor initially I was so angry with him for being so rough. But in hind site...it was what I needed.

As for the side effects...I was on Neurontin for a while and it didn't help at all and made me SUPER drowzy. I was sleeping 19 hours a day when I didn't have to work and falling asleep at the wheel when I was driving home from work. It was terrible. But it eventually subsided. Took longer than normal. When I first went on Lyrica I was sleepy for 3 days and then I was fine. These drugs do have a lot of side effects and sometimes it does take a while for the body to adjust to them. But the doctor shouldn't ignore what you are telling her or tell you to just get over it. That's unacceptable.

Good luck with things. This is an awful time when you are going through the experimentations to find out what helps you with your pain. CRPS is an awful condition that really is very scary at the beginning (and throughout). Just keep focused on finding something that helps with the pain and finding a doctor you feel comfortable with and who you trust to help you with your pain.
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Sonny1 (03-23-2011)