[Jennijojo]

Well my title is kinda just to be clever.
I had my first visit to pain management today and I was so worried they wouldn't know what I had going on. But oddly when I got there my hand was hugely swollen red and purple and ice cold. I have never had this happen so bad.

This was a blessing in disguise, because the hand specialist didn't send any of my records with my referral! They didn't know why I was there! They didnt know if they could do the visit without them. I drove over an hour to get there. But The doc came in I told her why I was sent there she looked at my hand and says " oh my how long has it been like this? Can it still move" (she thought I was in major atrophy) I told her that I hold it funny and kinda bent cause it's more comfortable. She then says "I don't really need the records I can tell by looking at it" (she ordered them anyways)


She Started me on gabapentin and wants to do a sympathetic nerve block ASAP. I have one set up for the third. She told me all about crps and was so wonderful to me. She wants me to do P.t on my hand and when I told her I was gonna run out of pt visits cause I had already used some for my back, she said "I'll get them to give you more"

I was so worried about this visit and now I feel like I have someone who is in my corner and will do what needs to be done to get to the bottom of this, or help me get some relief. And someone who understands and will listen to me! Very positive day even though I don't like how this first dose of gaba feels!
Had to share my experience

[St George 2013]

So good to read your message....I have small fiber neuropathy and it took me a year and a half to agree to go to pain mgmt. The thought of it just freaked me out. But it was my last option and my first visit was just like yours.....was just such a relief to have someone care so much about my pain and me as a person !

The gabapentin will take a few weeks to settle down everytime you titrate up but if you can wait until it all levels out in your blood it may help you a lot. My dr wanted me to titrate up every week but I had to do every 2 weeks. It was a lot easier for me that way and he agreed.

Take care.

Debi from Georgia

[birchlake]

Glad to hear you were lucky enough to get a good PM doctor!

Gabapentin is a very common "first line" med for CRPS. It is what was prescribed to me back in 2008 when I was diagnosed and I am still on it to this day. I have had very good luck with this drug and would be in big trouble without it as I found when I tried (under doctor's orders) to reduce my dosage.

Give it some time and titrate it up until you find the most effective dosage for you. It can be a little tricky, but is worth your time.

The nerve block is also very common out of the gate. As is PT. It's really important to find a therapist that understands CRPS (ask them point blank if they have experience it) and find another one if their strategy is "no pain, no gain"......

Good luck and be sure to keep us updated!

[Jennijojo]

About the gabapentin, I will eventually feel normal on it? Can you eventually drive? I know if I feel loopy at all don't drive. But later.

Also I want to clarify that I am not excited that she agrees that its crps. Just that she knew what it was going on. I was kinda hoping I would get there and she would say it wasn't

[Littlepaw]

Hi Jenni,

That is such good news! It is wonderful you have someone in your corner who is going to validate and help you! Sounds like she's all over it. You must feel so relieved.

You should adjust to the gabapentin but it takes some time. Titrating up slowly and/or starting out just taking it before bed can help. Did the PM say anything about the ACE inhibitor?

Sending hugs,

[Jennijojo]

Originally Posted by Littlepaw

Hi Jenni,

That is such good news! It is wonderful you have someone in your corner who is going to validate and help you! Sounds like she's all over it. You must feel so relieved.

You should adjust to the gabapentin but it takes some time. Titrating up slowly and/or starting out just taking it before bed can help. Did the PM say anything about the ACE inhibitor?

Sending hugs,

She didn't. She was giving me so much info I didn't think to ask. And she was kind of thrown off cause there were no med records. But I plan to ask her next time I'm in. She did tell me to be sure I took my bp meds regularly though when she was telling me if my bp is too high they can't do the block. I think I need to directly ask her.

[scubaforsythe]

Jenni,
So glad you had a positive experience at the PM doctor. Sorry your going through this!! This is certainly a terrible thing to live with on a daily basis. Thank god someone is helping you, and is able to treat a problem that so few people know anything about!!

Keep us posted on how treatment goes for you, I would love to know, it may help me to inform my PM doc, since he doesn't seem to quite get it...

[Jennijojo]

Originally Posted by scubaforsythe

Jenni,
So glad you had a positive experience at the PM doctor. Sorry your going through this!! This is certainly a terrible thing to live with on a daily basis. Thank god someone is helping you, and is able to treat a problem that so few people know anything about!!

Keep us posted on how treatment goes for you, I would love to know, it may help me to inform my PM doc, since he doesn't seem to quite get it...

Thanks scuba! I so far am just doing the gabapentin which already is helping a whole lot! aside from the bone pain and swelling. I can't wait to get the nerve block. However I am a little worried as me and steroids do not mix well. I broke my back a few years ago and had so many steroid injections. Even had them go in with a heated probe and burn off the nerves. They couldn't get me out for that one and it was horrible. Anywho i finally bit the bullet and had it surgically repaired. But I have had some pretty good adrenal reactions to steroids. I believe I saw you had a nerve block? I need to go look again. Did you have any issues with the steroid they add? Wish they could use something else. Lol what I don't know.