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 12-19-2016, 08:29 PM #1
Sophie0513 Sophie0513 is offline
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Default ketamine infusions/allodynia

quick question regarding ketamine infusions and tactile allodynia...

Has anyone done Ketamine infusions and seen an improvement in allodynia??

I am in the process of getting my cardio clearance requirements done so I can actually schedule my 10 day outpatient ketamine infusion.

One of my main issues right now is the inability to wear any type of footwear. This is preventing me from returning to work and I am about one month away from losing a very stressful but rewarding counseling job in a community mental health center. Plus it is winter and my feet are getting cold!

Thanks!!!
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Old 12-20-2016, 10:23 AM #2
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Originally Posted by Sophie0513 View Post
quick question regarding ketamine infusions and tactile allodynia...

Has anyone done Ketamine infusions and seen an improvement in allodynia??

I am in the process of getting my cardio clearance requirements done so I can actually schedule my 10 day outpatient ketamine infusion.

One of my main issues right now is the inability to wear any type of footwear. This is preventing me from returning to work and I am about one month away from losing a very stressful but rewarding counseling job in a community mental health center. Plus it is winter and my feet are getting cold!

Thanks!!!
My allodynia is way more do-able with Neurontin (gabapentin). It is the best at fighting these types of symptoms that are typical for nerve pain - for me, not that I can walk better or my CRPS improves with the medication, it just... takes care of the painful symptoms.

I hope Ketamine infusions help you, though.

What did your doctor say about regular medications, for nerve pain? Or, have you tried those already?
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 12-20-2016, 12:25 PM #3
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Hello Marleen

I am already on gabapentin 2400mg...doctor is now recommending ketamine! maybe there is room to go up in my gaba prescription??? Not sure..
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Old 12-20-2016, 04:42 PM #4
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Hello Marleen

I am already on gabapentin 2400mg...doctor is now recommending ketamine! maybe there is room to go up in my gaba prescription??? Not sure..
I, myself, but we shouldn't compare, one "case" of CRPS isn't the other... I myself am on 2700 mg a day, so 3x (3x300mg), a "dosage" right below the max. for me. My doctor wanted me to have some room to go up should that need ever arise. The rest has been "dealt with" with pain patches (max. buprenorfine). I have chronic recalcitrant (stubborn) CRPS, though. I haven't been offered Ketamine treatments so far. TBH, I'm a little scared of the product, no matter what anyone says.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008

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Old 12-24-2016, 08:06 PM #5
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Originally Posted by Sophie0513 View Post
quick question regarding ketamine infusions and tactile allodynia...

Has anyone done Ketamine infusions and seen an improvement in allodynia??

I am in the process of getting my cardio clearance requirements done so I can actually schedule my 10 day outpatient ketamine infusion.

One of my main issues right now is the inability to wear any type of footwear. This is preventing me from returning to work and I am about one month away from losing a very stressful but rewarding counseling job in a community mental health center. Plus it is winter and my feet are getting cold!

Thanks!!!
Hello Sophie,

I tried ketamine infusions on an outpatient basis for almost 2 years and did a 7 day inpatient infusion in ICU. It did help with allodynia, but the effects did not last long for me. I was getting out patient infusions every other week and the inpatient infusion only lasted 6 weeks and the pain and allodynia came back with a vengeance. I had read in an article in Pain Magazine that Ketamine works for about 25% of people, 50% will need constant boosters and the other 25% will receive no benefit at all. The ketamine began to really effect my liver and over time it became less effective.

I, like you, cannot wear anything on my left foot because of the pain, swelling and alloydynia. I recently went through a trial for the St. Jude's BURST DR Spinal Cord Stimulator. I had ALWAYS been against the whole idea of having an SCS because I also have CRPS in my spine and a fusion at L4-5, L5-S1, but I got a new pain doctor and he talked to me about this brand new technology that was FDA approved in Oct 2016. You cannot feel it at all and uses intermittent “burst” pulses to replicate the human body’s own natural nerve impulse patterns. My trial was great success, as I received over 80% pain relief (with having a torn hip labrum in my CRPS leg). I was able to wear socks and shoes for the first time in ages. I am now awaiting my permanent surgery.

So, if the ketamine does not work for you, there are other options out there to consider. Good luck, God bless and Happy Holidays!
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Old 12-26-2016, 07:52 AM #6
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Dear Loves Terriers!
Thank you so much for sharing your experiences with the ketamine infusions. I had read some of your posts and I do remember reading that you did not have a good experience with the infusions.
I am so happy to hear that your trial for the SCS went well and that you received 80% pain relief! I hope you continue to post about your experiences with it!
it is nice to hear that you continued to have options for dealing with your pain! This also gives me hope that I will find what works for me as well!
I wish you the best with the SCS! I wish you a happy and merry holiday season! 2017 should be bringing you some pain free days with SCS!!!!
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Old 12-27-2016, 08:23 AM #7
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Sophie,

Ketamine infusions have helped relieve allodynia in my hand and also in my foot. I am one of those people that has benefited from ketamine infusions and continue with two day infusions four times a year. You must have blood tests afterwards to check your liver function. For me it is worth it because I have nasty reactions to many medications. It does start to wear off after about two months and the pain gradually increases, so that the relief is welcome by the end of the three months between infusions.

Just remember that everyone is different. It took over a year before I saw the most improvement. I understand that this is not uncommon. Good Luck! I understand how important quick improvement is to you especially because of your job. I hope you find the relief that you need soon.

Shay
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Old 12-29-2016, 08:11 AM #8
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Quote:
Originally Posted by Shay08 View Post
Sophie,

Ketamine infusions have helped relieve allodynia in my hand and also in my foot. I am one of those people that has benefited from ketamine infusions and continue with two day infusions four times a year. You must have blood tests afterwards to check your liver function. For me it is worth it because I have nasty reactions to many medications. It does start to wear off after about two months and the pain gradually increases, so that the relief is welcome by the end of the three months between infusions.

Just remember that everyone is different. It took over a year before I saw the most improvement. I understand that this is not uncommon. Good Luck! I understand how important quick improvement is to you especially because of your job. I hope you find the relief that you need soon.

Shay
Thank you Shay! You have been a tremendous sense of support to me since I started posting my health problems/questions etc! I wish you a happy and healthy New Year!!!!
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