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)


advertisement
Reply
 
Thread Tools Display Modes
Old 07-07-2015, 05:11 PM #41
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default

No worries on the posting. New posters often have to get creative in the beginning.

If you feel inclined start a new thread to introduce yourself. The most people will see you that way and there is wonderful support here. If you haven't watched Dr. Pradeep Chopra's "CRPS Diagnosis and Management" on YouTube it has a wealth of rational info and tips. He is highly regarded in the CRPS arena. Most of all hold on to hope. 80% of people improve over time, odds are in your favor. Keep moving, get in the pool, be kind to yourself and come here for sharing and support. Feel free to PM anytime.

Sending Healing Love,

Okay now back to ketamine...
__________________
Littlepaw

Shine Your Bright Light

Last edited by Littlepaw; 07-07-2015 at 05:37 PM.
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), EnglishDave (07-07-2015), vintagewine (07-24-2015)

advertisement
Old 07-22-2015, 05:01 PM #42
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Help Update: Infusion #4

Hello all,

I had my fourth infusion 12 days ago and had a follow up with PM yesterday that was quite interesting. Since I am making improvements and tolerating the infusions we are continuing with 4 more then a quarterly maintenance booster. I had a couple of interesting take aways from my follow up visit.

I have been reporting that the ketamine is NOT earth shattering but is helping and my PM said this is typical. I told him that I seem to have a slow gradual uptick in function and pain reduction after having one and he said that is also typical. So for once my body is doing exactly what it's supposed to be doing.

He said the pain is like a ball of yarn and we are pulling the string out from the ball a little bit each time until it gets smaller and smaller. He said patients report that they notice at some point that they don't have any pain. He also said some people choose not to come in for quarterly boosters and 50% of those people relapse. None of his booster people have relapsed to their former pain level. I'm gonna be a booster patient!

The PM also thinks that I am NOT entrenched in chronic pain yet because my pain is not totally stimulus independent. It is related to activity or too much standing/dependent position which causes pressure on the nerve from normal post op swelling. ( says it may always swell some) So even though I am a year out from my last operation the pain is still acute. He said his goal is to support me through the next year and keep the changes from becoming permanent. He thinks my nerve still has some healing to go from its big repair. 6-12 months maybe.

I think I like this guy okay. I am feeling hopeful. Heck what's one more year? I can't wait to see what happens with the next batch of four. We go up on dose to 1mg per kg and I will be able to do them on a consistent two week schedule starting Aug. 18.

Thanks for all the support and encouragement. I will report back in when there is news.

Sending hugs and prayers for everyone,
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), EnglishDave (07-31-2015), Jennijojo (07-22-2015), Lara (07-22-2015), LIT LOVE (07-22-2015), maygin (08-05-2015), vintagewine (07-23-2015)
Old 07-22-2015, 07:41 PM #43
Jennijojo's Avatar
Jennijojo Jennijojo is offline
Junior Member
 
Join Date: Mar 2015
Location: Western Washington
Posts: 95
8 yr Member
Jennijojo Jennijojo is offline
Junior Member
Jennijojo's Avatar
 
Join Date: Mar 2015
Location: Western Washington
Posts: 95
8 yr Member
Default

Quote:
Originally Posted by Littlepaw View Post
Hello all,

I had my fourth infusion 12 days ago and had a follow up with PM yesterday that was quite interesting. Since I am making improvements and tolerating the infusions we are continuing with 4 more then a quarterly maintenance booster. I had a couple of interesting take aways from my follow up visit.

I have been reporting that the ketamine is NOT earth shattering but is helping and my PM said this is typical. I told him that I seem to have a slow gradual uptick in function and pain reduction after having one and he said that is also typical. So for once my body is doing exactly what it's supposed to be doing.

He said the pain is like a ball of yarn and we are pulling the string out from the ball a little bit each time until it gets smaller and smaller. He said patients report that they notice at some point that they don't have any pain. He also said some people choose not to come in for quarterly boosters and 50% of those people relapse. None of his booster people have relapsed to their former pain level. I'm gonna be a booster patient!

The PM also thinks that I am NOT entrenched in chronic pain yet because my pain is not totally stimulus independent. It is related to activity or too much standing/dependent position which causes pressure on the nerve from normal post op swelling. ( says it may always swell some) So even though I am a year out from my last operation the pain is still acute. He said his goal is to support me through the next year and keep the changes from becoming permanent. He thinks my nerve still has some healing to go from its big repair. 6-12 months maybe.

I think I like this guy okay. I am feeling hopeful. Heck what's one more year? I can't wait to see what happens with the next batch of four. We go up on dose to 1mg per kg and I will be able to do them on a consistent two week schedule starting Aug. 18.

Thanks for all the support and encouragement. I will report back in when there is news.

Sending hugs and prayers for everyone,
I love the ball of yarn analogy! Good stuff littlepaw! 👍
Jennijojo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), Littlepaw (07-22-2015)
Old 07-22-2015, 08:07 PM #44
Cheryl1818 Cheryl1818 is offline
Junior Member
 
Join Date: Jun 2015
Posts: 82
8 yr Member
Cheryl1818 Cheryl1818 is offline
Junior Member
 
Join Date: Jun 2015
Posts: 82
8 yr Member
Default

I am so happy that your treatment is working. Thanks for sharing your "good doctor" story. I get so frustrated trying to deal with the health care system. It's nice to be reminded that there are caring doctors out there who do what they do because they want to help people get better.

Good luck with your next round of infusions. I hope your days keep getting better and better.
Cheryl
Cheryl1818 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), EnglishDave (07-31-2015), Littlepaw (07-22-2015)
Old 07-23-2015, 07:58 AM #45
NurseKris NurseKris is offline
Member
 
Join Date: Jan 2014
Location: PA
Posts: 163
10 yr Member
NurseKris NurseKris is offline
Member
 
Join Date: Jan 2014
Location: PA
Posts: 163
10 yr Member
Default

That is so great that the infusions are working! I love the yarn ball analogy. I have never heard it explained like that but it makes perfect sense. It's crazy to think people don't go back for their boosters. Thank you for sharing your story with all of us. I look forward to your updates because you always explain things so well. It is refreshing how you provide some optimism when all we usually hear is doom and gloom.
NurseKris is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), EnglishDave (07-31-2015), Littlepaw (07-23-2015), visioniosiv (07-23-2015)
Old 07-23-2015, 08:51 AM #46
vintagewine vintagewine is offline
Junior Member
 
Join Date: May 2015
Posts: 68
8 yr Member
vintagewine vintagewine is offline
Junior Member
 
Join Date: May 2015
Posts: 68
8 yr Member
Default

Hi LittlePaw,

I'm so happy that your infusions are working for you !! That's GREAT news !!

I was supposed to have a ketamine infusion several months ago, before I found this website and all of the forums and support here.

I chickened out because of the things some people had told me. They all scared me !

Thanks so much for sharing your experience
vintagewine is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), Littlepaw (07-23-2015)
Old 07-23-2015, 04:36 PM #47
velkyn velkyn is offline
Junior Member
 
Join Date: Apr 2015
Posts: 31
8 yr Member
velkyn velkyn is offline
Junior Member
 
Join Date: Apr 2015
Posts: 31
8 yr Member
Default

I 💜 you Littlepaw! You always have some positive insight that I so desperately need. I am so happy for you that the infusions seem to be helping! I love that your foot gets to feel "footy" sometimes. That gives me so much hope! Also the ball of yarn analogy... That is kinda what's it's like 😋

I appriciate the time and experience you share with everyone here. It is so refreshing to read your posts because you make me feel warm and cozy inside... Like you're our Mom listening to all our negativity but you are able to give us a glimmer of light and hope. I hope these infusions continue to make things better. You know, I know all about foot ants! It's the worst 😢

You give me hope 💜
velkyn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), Littlepaw (07-23-2015)
Old 07-23-2015, 10:47 PM #48
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default So honored!

You guys! you're amazing. Really!

I am so honored to be able to contribute something meaningful to the group and I am just full of warm fuzzies after reading your comments. It really means a lot to me to see that this post is helpful. That's exactly what I was hoping. ketamine is kind of shrouded in mystery and there is not much out there about the low-dose infusions. I am happy to share this experience and so thrilled that there is a positive outcome to report.


Velkyn - I just about teared up reading your post. I understand what a struggle you have had and I am so glad that I give you some hope. Of all the cool things I have done in my life being a Mom is my favorite! It just kinda comes out.

On that note, my foot feels better enough that I enjoy being in the kitchen more. I noticed the clinic staff is cranky and rushed in the morning so after infusion two I started baking banana bread or oatmeal strawberry bars the day before to take in regardless of how I am feeling. I give the batch to my infusion nurse to put in the break room. The upside? I am always given to the best IV starter, they take super-good care of me and are always happy when I come in. Hee-hee, baked goods are my secret weapon.

Thanks for all the hugs and warm fuzzies. They made my day!
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), EnglishDave (07-31-2015), Inspiretoday (08-02-2015), velkyn (07-24-2015), vintagewine (07-24-2015), whiteaa (07-24-2015)
Old 07-28-2015, 10:42 PM #49
goblue1998 goblue1998 is offline
Member
 
Join Date: Apr 2015
Posts: 100
8 yr Member
goblue1998 goblue1998 is offline
Member
 
Join Date: Apr 2015
Posts: 100
8 yr Member
Default

Glad to hear the treatment is working. I just watched dr. Chopra video. Excellent information. Thank you.
goblue1998 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015), Littlepaw (07-29-2015)
Old 07-31-2015, 06:56 PM #50
EnglishDave's Avatar
EnglishDave EnglishDave is offline
Magnate
 
Join Date: Dec 2014
Location: Yorkshire, England
Posts: 2,098
8 yr Member
EnglishDave EnglishDave is offline
Magnate
EnglishDave's Avatar
 
Join Date: Dec 2014
Location: Yorkshire, England
Posts: 2,098
8 yr Member
Cool Smirk

Littlepaw,

Not surprising the Staff are favouring you if you are bribing them with baked goodies Poor, underappreciated things, probably never had this before.

Just be careful they don't saboutage your treatment to keep you going for longer

In all seriousness, this is just the sort of kind-hearted act I would expect of you.

Dave.
__________________
You and I are yesterday's answers,
The earth of the past come to flesh,
Eroded by Time's rivers
To the shapes we now possess.

The Sage - Emerson, Lake & Palmer.
EnglishDave is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (11-01-2015)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
ketamine infusion msdrea83 Reflex Sympathetic Dystrophy (RSD and CRPS) 8 01-09-2013 12:15 PM
Ketamine Infusion @ HSS Nov. 1, what would help others? Reddawn600 Reflex Sympathetic Dystrophy (RSD and CRPS) 38 02-29-2012 12:58 PM
Ketamine infusion byates Reflex Sympathetic Dystrophy (RSD and CRPS) 2 03-16-2011 06:03 AM
Yay! My first Ketamine infusion! Kakimbo Reflex Sympathetic Dystrophy (RSD and CRPS) 10 02-24-2011 01:26 PM
ketamine infusion #2 msdrea83 Reflex Sympathetic Dystrophy (RSD and CRPS) 11 05-05-2009 11:33 PM


All times are GMT -5. The time now is 02:12 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.