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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)

1st Lidocaine Infusion / suggestions please

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Unread 11-11-2012, 07:14 PM   #1
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Default 1st Lidocaine Infusion / suggestions please

This coming Friday, finally, for the first time I am getting a Lidocaine infusion. Any suggestions for before and after the infusion?? Is remission possible? I hope I do not get nausea.

Some background follows: I was very healthy until injuries that brought on crps occurred ... Feb 27, 2012 (venipuncture, left arm) and Apr 3, 2012 (electrical injury, left arm). Multiple well known pain doctors have now diagnosed crps/rsd in left arm, left leg, & left facial. I also have crps symptoms in right arm, right leg, right facial, & trunk. Other than several meds, supplements, PT, Pain psychology, OT, ... this infusion will be my first procedure for crps. Some doctors were willing to do blocks, however, some doctors did not want to do blocks since my symptoms are systemic. My main symptoms/signs are systemic nerve pain, blood circulation issues, hand color changes, edema left foot, body jerking at rest state, & shiny feet. I always welcome hearing from another venipuncture or electrical injury crps patient too. Thank you! SS
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Unread 11-11-2012, 07:25 PM   #2
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And 4 meds I am now on for nerve pain:
gabapentin - 3,300mg/day, C-naltrexone 10mg/day, dextromethorphan SR 60mg/day, C-ketamine oral 10mg ...up to 6/day.
Thank you! SS
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Unread 11-11-2012, 10:20 PM   #3
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Hi,

I have had a lidocaine infusion. It did not give me remission but I did notice a significant difference immediately- significant reduction in pain! Unfortunately, after about 10 days, the effect mostly wore off for me but thats just me. Everyone's body reacts differently. If it does work for you, there is a prescription form of lidocaine called mexilitine that you take orally, not to be confused with the topical lidoderm patches. I took it for a while since it helped me but then I needed to come off of it to try another medicine. You may want to bring a life saver, piece of candy, gum, or something. I remember getting a metallic taste in my mouth. Of course, ask if it is okay. I don't remember any nausea or side effects other than slight chest pain. Double check with them and make sure it is okay to take your meds the day before and day of to avoid any reactions. Make sure you have somebody else drive you, you will probably be woozy. Don't be alarmed if they do an EKG, they just are monitoring. Good luck, hope it works for you. Let us know how it goes!


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Originally Posted by sallysue View Post
This coming Friday, finally, for the first time I am getting a Lidocaine infusion. Any suggestions for before and after the infusion?? Is remission possible? I hope I do not get nausea.

Some background follows: I was very healthy until injuries that brought on crps occurred ... Feb 27, 2012 (venipuncture, left arm) and Apr 3, 2012 (electrical injury, left arm). Multiple well known pain doctors have now diagnosed crps/rsd in left arm, left leg, & left facial. I also have crps symptoms in right arm, right leg, right facial, & trunk. Other than several meds, supplements, PT, Pain psychology, OT, ... this infusion will be my first procedure for crps. Some doctors were willing to do blocks, however, some doctors did not want to do blocks since my symptoms are systemic. My main symptoms/signs are systemic nerve pain, blood circulation issues, hand color changes, edema left foot, body jerking at rest state, & shiny feet. I always welcome hearing from another venipuncture or electrical injury crps patient too. Thank you! SS
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Unread 11-11-2012, 11:34 PM   #4
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After infusion they said they may prescribe:
mexilitine or lamotrigine. thank you SS
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Unread 11-18-2012, 08:29 PM   #5
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So here is how the Lido Infusion went Friday: I was pain free during the infusion and recovery - a few hours. I was somewhat better for about 30 hours and then pain and symptoms began to get back to as before. They did not follow with any new meds so I do not know if that would have helped. I am discouraged. The doc said to call him in one week with an update.
What should I try next? I am a bit afraid to try ketamine. Should I try HBOT?

This is truly a horrible condition that no human should have to endure.
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Unread 11-19-2012, 12:23 PM   #6
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Sallysue,

Sorry that you did not have long term results from your lidocaine injection. Can they do more?

Please research both ketamine and HBOT before doing either one.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Unread 11-19-2012, 09:37 PM   #7
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Sorry to hear the infusion wasn't long lasting, it did not provide a last effect for me either.I have some reservations about ketamine, I know it has been successful for some people but have felt it is too risky to try. HBOT is definitely a safe treatment and painless treatment as long as you follow simple rules such as no nail polish, makeup, hair spray etc. I have had around 60 "dives"HBOT treatments and did have lasting reduced pain and swelling. It didn't completely take it away but it did help some and the after each treatment I was so full of energy. I like to think of the treatments as a battery recharger. Let me know if you have any other questions. Good luck!



Quote:
Originally Posted by sallysue View Post
So here is how the Lido Infusion went Friday: I was pain free during the infusion and recovery - a few hours. I was somewhat better for about 30 hours and then pain and symptoms began to get back to as before. They did not follow with any new meds so I do not know if that would have helped. I am discouraged. The doc said to call him in one week with an update.
What should I try next? I am a bit afraid to try ketamine. Should I try HBOT?

This is truly a horrible condition that no human should have to endure.
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Unread 11-29-2012, 03:56 PM   #8
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The doc wants to and has scheduled a 2nd Lidocaine Infusion for mid Dec. I assume since I had some positive effects they are trying to see if another infusion can help positive effects to last longer...?
I have an appt with the main PM doc next week and will ask him his thoughts on HBOT. I am unsure about trying a ketaime infusion. I just stopped taking 'ketamine oral' as I was wondering if it was affecting my bladder. I have had some unusual, hard to describe, bladder sensations lately. Has anyone else had any similar odd bladder sensation experience with 'ketamine oral'? Thank you very much for all your comments.
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Unread 11-29-2012, 05:27 PM   #9
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Hi Sallysue,

I also have CRPS due to a extended venipuncture procedure done 10/25/2012. I'm not sure that I can help you as this diagnosis is really new and I'm lost in all of this. My PM doc wants me to have Sympathetic Blockage (Phentolamine) done but I'm having trouble finding somewhere that will do it. Its starting to spread to my left clavicle and I'm also starting to feel pain in my right shoulder now as well .... I agree with your comment about how no human should have to suffer with this. I don't know what to do! I'm in Spokane Washington. I have been seeing a PM Physiatrist. His office is closed today and tomorrow. The doctor he referred me to doesn't do the treatment he thinks I should have and he wanted me to have it today if at all possible......pain is getting worse I'm only on Percocet right now.........I feel like breaking down and crying
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Unread 11-29-2012, 06:53 PM   #10
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Thank you Emily. My thoughts are with you. I am in agony today but this info from you was helpful ...'Sympathetic Blockage (Phentolamine)'. A prior PM doc had suggested that I should consider an infusion of lidocaine ... ketamine ... and phentolamine ... meds each pushed separately. I did not know what that last med was for ... now I know more about phentolamine.

We all need to help bring more awareness to this terrible crps/rsd pain condition so researchers will work towards a cure.
Thanks again.
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