Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 08-24-2015, 06:29 PM #11
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Thanks guys for the info! I won't be under anesthesia. And if I want sedation I have to ask. I have it tomorrow and was informed today they would be putting the iv right in the area the pain originates from (my thumb ends up the area that hurts worst on really bad days but the crps is said to be in my wrist)
Not to thrilled about this.
The dr informed me if I wanted to apply for short term disability to be retrained for a new career I had to try everything.

What's weird is she's anti med. She said there is an antidepressant used to treat pain but she doesn't like to start there. And pain meds, she said im too young (almost 40) because she thinks this is going to go on forever I guess....but I'm about at the max gaba dose now. Helped for a couple weeks and now it's starting to be less effective.
My ot told me the hardening of the tendons and weakness of ligaments are likely an underlying cause or part of the crps destruction so my hope of not having crps is kinda dashed. He said he too thinks I have it.
I simply can't live with this pain always. It's devistating. I do have good days where i use my hand more but the following days are horrible. I'm so tired of this. I don't care if it's crps or what I just want to feel better. Willing to try anything.

BUT everything I've read sounds like there is no point in this bier block. Everything they do they keep talking about resetting the nerve/pain response. Well my brain doesn't seem to be falling for it. As far as plexus block, is this like an interscalene? I wouldn't care if they deadened my arm every week...actually that would be amazing.

Sorry so long, I have had some improvements over the course of these treatments. I don't get blue hand very often. Temp stays pretty normal, most of the time (unless I carry my hand at my side) and my color as a whole is a wee bit better..still have swelling and flaming red areas. But the thing that im most bummed about is the pain hasn't changed

Wish my luck tomorrow! im telling my brain to listen! Lol
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Old 08-24-2015, 07:08 PM #12
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Hi Jennijojo,

You are going to do fine. Sounds like one of those hoops you have to jump through.

So I looked into the Bier block a bit further than the Dutch Protocol and I found this encouraging article from the Journal of Hand Surgery, European edition 2011.

http://www.ncbi.nlm.nih.gov/pubmed/21719518

Is your doc using methylprednisone along with the lidocaine? 88% in this study experienced relief and at five years out 92% were pain free. I don't know who ran the study or if it excluded any other treatments. Its nice to see something encouraging though.


Let us know how you do. I am sending thoughts of healing and a comfortable procedure.
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Old 08-24-2015, 07:45 PM #13
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Originally Posted by Littlepaw View Post
Hi Jennijojo,

You are going to do fine. Sounds like one of those hoops you have to jump through.

So I looked into the Bier block a bit further than the Dutch Protocol and I found this encouraging article from the Journal of Hand Surgery, European edition 2011.

http://www.ncbi.nlm.nih.gov/pubmed/21719518

Is your doc using methylprednisone along with the lidocaine? 88% in this study experienced relief and at five years out 92% were pain free. I don't know who ran the study or if it excluded any other treatments. Its nice to see something encouraging though.


Let us know how you do. I am sending thoughts of healing and a comfortable procedure.
I can't have any more steroid. The last round of 3 in a month was too much. Had some issues. So I'm asking for no more. The neuro surgeon who did my back repair had methyl prednisone listed as an allergy cause I went kinda nutty after so many in my back. But I'm not allergic and told them I would give it a try. In the last twelve months inhave had 7 steroid injections. Lol so im worried to have any more. I have issues with adrenaline regulation with them sometimes. That's what happened last month. It's kinda hard to wait it out feeling like you're gonna go crazy lol but I have been told that most people who are actually going insane aren't aware it's happening
Thanks for sending your hopes., im going to be so very hopeful! I will update tomorrow!
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Old 08-25-2015, 08:12 PM #14
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I had the bier block today. They didn't tell me they put ketamine in the solution in my arm...im a little fuzzy as on top of iv ketamine I had 6mgs of versed. When they released the cuff all the meds pooled in my lower arm rushed to my brain and weird stuff happened.they kept saying to give me more versed so I wouldn't remember. I'm not sure if it was the ketamine or the steroid or the lidocaine, but I couldn't hear,my limbs and head were flailing and I couldn't control it. I couldn't open my eyes yet was seeing amazing and crazy stuff..the nurses and drs talked me through and I woke up 3 hours later. Kinda seemed like they weren't surprised by what Happened...
It remains in my head a little but not as a terribly scary thing. I have some relief in my hand but where the iv went in that hand still hurts and the nerve up my forearm.

Wish it would have stayed numb! Well keep your fingers crossed for me, dr said it could take a bit to get true idea of if it really helped.

Is this normal or weird lol?
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Old 08-25-2015, 09:56 PM #15
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Sounds like you had a heck of a day! I don't know if that is weird or normal. My ketamine with versed is not terribly weird but then again I am getting it dripped in slowly.

Hope you get some upcoming relief!
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Old 08-25-2015, 10:41 PM #16
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Sounds like you had a heck of a day! I don't know if that is weird or normal. My ketamine with versed is not terribly weird but then again I am getting it dripped in slowly.

Hope you get some upcoming relief!
Right now I'm at a 2 for pain. I was a 7-8 yesterday! The iv site and the missed iv site in that hand are sore but so far so good. Lol I saw trees growing out of Playdoh. Well my brain was sending those images cause I would t open my eyes.
I have no opinion any more whether that experience was good or bad lol thanks versed!
I'm so hoping it stays like this!
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Old 08-26-2015, 12:54 AM #17
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Sounds like you had a heck of a day! I don't know if that is weird or normal. My ketamine with versed is not terribly weird but then again I am getting it dripped in slowly.

Hope you get some upcoming relief!
When you have an infusion (I found out today they do them at my pms office)
Do you have any psychological or out of body effects? I don't know if it was the dose all at once Ot the mix of that and lidocaine getting through my system. I read the lidocaine can have nasty effects of its own in your blood stream.

I think I would have lost it if it wasn't for the other meds they were pushing and the dr oh so sweetly walking me through my tripping out lol
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Old 08-26-2015, 10:33 AM #18
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Hi Jennijojo,

Hard to know which med you reacted and responded to. I do well on the ketamine with versed. They put a little zofran in for nausea which is my biggest side effect. I tend to be urpy, never outgrew motion sickness, etc.

So far I just get swirly colors behind my eyes. I keep them closed because the blurry double vision many get during the infusion is not to my liking. I listen to peaceful music and just chill out. Same day I take a nice long nap and dont drive till the following morning. No afteraffects to date. I am little and not real tolerant of meds but it hasn't been difficult.

My dose was built up from 0.5 mg per kg to 0.75, next time we go to 1mg, the max dose he gives. I go every two weeks for 4 more sessions, then have boosters. If I dont like the higher dose I will go back down because I get benefit at the mid level. My next infusion is this Friday, my schdule got delayed since they are booked. I will post an update to my ketamine thread a few days after.

Keep in mind effects are cumulative and not earth shattering for most people. It takes a while to build. If you go for it try more than one before making a judgement.

So glad you got some relief!
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Old 08-26-2015, 11:58 AM #19
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Quote:
Originally Posted by Littlepaw View Post
Hi Jennijojo,

Hard to know which med you reacted and responded to. I do well on the ketamine with versed. They put a little zofran in for nausea which is my biggest side effect. I tend to be urpy, never outgrew motion sickness, etc.

So far I just get swirly colors behind my eyes. I keep them closed because the blurry double vision many get during the infusion is not to my liking. I listen to peaceful music and just chill out. Same day I take a nice long nap and dont drive till the following morning. No afteraffects to date. I am little and not real tolerant of meds but it hasn't been difficult.

My dose was built up from 0.5 mg per kg to 0.75, next time we go to 1mg, the max dose he gives. I go every two weeks for 4 more sessions, then have boosters. If I dont like the higher dose I will go back down because I get benefit at the mid level. My next infusion is this Friday, my schdule got delayed since they are booked. I will post an update to my ketamine thread a few days after.

Keep in mind effects are cumulative and not earth shattering for most people. It takes a while to build. If you go for it try more than one before making a judgement.

So glad you got some relief!
Next time I think I would do better with an infused dose rather than boom all at once. Thing is I didn't even know he put ketamine into the mixture until he was putting it in.
I giggle now hearing the nurses say "is she having a seizure? What's going on?" And the doc says "it makes you feel like you're on another planet" lol so very true. I think infusion would be best for me. I'm not one who likes to lose control of my mind like that! I will talk to them next visit and see what they have to say. Reading that study I didn't see whether that 5 year improvement time frame was with one block or regular bier blocks? So I'm curious what is in store for me but at least I know this dr has other tricks up his sleeve vs how his p.a talked at my last appointment!
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