Hi All,

I am new here, just been diagnosed end of June/ beginning of July with CRPS in my right ankle after surgery May 20th. I think it started 9 days post-op with burning and electric shooting in 2 of my toes, but the surgeon told me that was normal post-op. Guess not!

Anyway...I would like to know if anyone has experience with Ketamine infusions...whether it be the 3-5 day process or the 1 day high dose process. Anyone gone thru the Ketamine coma process?

I use a 10% Ketamine topical lotion that helps out with my stiffness and pain when I use it morning & night, which is why I would like to pursue the Ketamine further.

I am also on :

Lyrica 300 mg a day
Topamax 75 mg a day
Lexapro 20 mg a day
Trazadone 37.5 mg a day
Vitamin D 1000 IU a day
Vitamin C 500 mg a day
Women's ALIVE energy multi vitamin & mineral

I am also looking at doing a sympathetic nerve block in the next week or so, since if I do anything with the Ketamine it will be off in the future.

The reason I am asking is two fold...I want to be fairly aggressive with CRPS because I have to have the same ligament repair/ bone spur/tendon tear/ganglion cyst surgery on the other ankle too and I would like to have a cardiac procedure done next year to close a small "hole"(PFO) in my heart.

The other reason is that I don't want to let the CRPS spread or get worse by not treating it. I do PT at home because I can't drive and my husband has to work...home PT is great, paraffin bath,movement therapy, marble therapy, warm compress...all leading up to weight bearing with a step or two if I feel I can do it that day, which I sure try! All listening to the birds singing outside. Helps with the depression.

If anyone has any suggestions on Ketamine or any herbals or rubs or any PT type moves or any happy thoughts to help with the fire burning from CRPS...feel free to post

Best to all... this is a difficult diagnosis to have for anyone, I am a active person...horse riding,showing,grooming,training,teaching...911 EMT 18+ yrs, long distance cyclist, master scuba diver, and photographer...all on hold for now.

Thank you,

Terri

Hi Terri,

So sorry for your new diagnosis. I'm sorry, I can't give you info on the ketamine because I haven't been able to try it yet myself. I just wanted to say you are smart for being proactive and wanting to keep things from progressing.
Also, I noticed you said you do PT which is super important. However, I would avoid ice. Some people swear by heat, but I can't even stand the thought.

I'm glad to see you are able to do PT with minimal pain medication. I imagine you are really suffering, but that is a great sign.

Vitamin C - also, very important

I'm hoping that given your early diagnosis and assertiveness, you are able to tame this beast and have a good chance at remission.

Let me know how things are going and best of luck!

Welcome again and hope we can provide some of the relief you need .
my personal experience, I never had ketamine infusions therapy and hope one day get them myself, I know many others do and hope soon be able help you.www.rsdsa.org will for sure have some information that will helpful to you ,also Im glad you are already on medical treatments and hope soon you regain some of yourself back .
Gentle hugs ,from Jesika .
Ps. My iPad changes so many words,please forgive me for any mistake,is not my intention ,this iPad is like my rsd ,getting in everything !!!!

Hi Terri - not sure if the PFO would be contraindication for ketamine because its an anesthetic. Also, most docs won't give it until a patient has failed other therapies. Keep up the PT, we must keep moving. Never use ice!! Consider getting a lumbar sympathetic block from a skilled pain management doctor. These are most effective when done in the first year. What is marble therapy?
I have gotten a lot of benefit from aquatic therapy, if you have access to a warm water pool I highly recommend it. And daily stretching too. Wishing you wellness ~Lottie

Hi Terri,

It sounds like you are doing many good things to tame this thing early on. I found the Dutch research to be VERY beneficial in the early stage. (Mine was triggered by right ankle surgery, same as you.) I am now fully recovered. http://www.rsdcanada.org/parc/englis...derlaan.html#5

NAC is another potent free radical scavenger that I would recommend in advance of and after any upcoming additional surgery, should you choose to go that route. I also applied DMSO 50% to the effected area 3-5x daily.

Did a lot of at home PT as well, incorporating mirror and visualization therapy into much of it. If you're interested in throwing the kitchen sink at it, here are some more ideas: http://neurotalk.psychcentral.com/thread205597.html

All the best and you can beat this.

Thank you all for responding! I will take something from each post and use it in my treatment.

I am being treated at one of the nation's leading military hospital's that has much experience with neuropathic pain after treating wounded warriors from over 10 years of war. This being the case , the pain management Drs here are pretty aggressive when it comes to treating RDS/CRPS.

Totally forgot to mention that I also have a DVT in my right leg and am on anticoagulant medication....I know how does one forget something like that?!! Overwhelmed by everything and meds. My med list should have included Xarelto.

This is another reason why the push for the Ketamine treatment since I would have to go off the anticoagulant medication to have the nerve block done.

One of you nice responders asked what the marble therapy is...we use the marbles to learn movement in the foot by learning to pick up the marbles with the toes as well as roll the foot around on top of them with pressure. Different sizes are used and yes it hurts, but I kind of enjoy the calming nature of picking up the marbles with my toes and putting in a container.

Once again thank for all of your support and suggestions... I will look each one up.

Best to all of you in your fight, I don't feel so alone anymore! Thank you!

Terri

Also try to desensitize the area by touch gently different textures ,marbles,towels,feathers,some stones in your hand rubbing I the affected area but not any stones ,those stones that looked like marbles ,soft no rough, also a hair brush, textures that eventually makes that area less sensitive to touch ,obviously with care and if you feel not comfortable just try one thing at the time.
Follow also with your dr and ask if that is ok and they as,I can provide you with some massaging creams to do it at home,many dr do that as well,just to help that area to be less sensitive.
Gentle and soft hugs and hope weekend brig s you days of relief,from Jesika .

Hi all,

I am scheduled for my Ketamine 1 day high dose infusion therapy next week. My pain management Dr feels that since I am on anti-coagulation medication for the blood clot in my leg, the Ketamine treatment is the way to go since I can't go off of the blood thinner for a nerve block.

Got casted today for an Arizona brace for my left ankle to provide as much stability as possible over the next several months while the right ankle continues to heal from the surgery and hopefully my CRPS goes into remission. I get out of my fracture boot tomorrow and into a new splint on the right ankle...looking forward to that! I have been walking around the house barefoot with a cane after my PT! My joint feels good, but my skin feels like I am walking on broken glass.

Today my CRPS foot is on fire, the burn won't stop no matter what I do. Guess with every step forward there will be 2 steps back, need to learn to work with that.

Thank you all for you suggestions, I took each one to heart!

Terri

Hi & Welcome!, but as usual I'm sorry you had to join us with this.
I'll echo the the comments made by others on here, I had to go
through many types of treatments before ketamine would be "put
on the table" by my pain mgt. Dr.
It's on the table now, but I'm holding off because it's very cost prohibitive
& insurance won't cover any of it.
Like Lottie said maybe nerve blocks are worth trying first.
I've had over 25 of them now (over 1 1/2 yrs.) & they keep the pain
managed pretty well in combo with meds. The first 3-4 nerve blocks
were pretty dramatic improvement wise (that pretty much confirmed my
dx) but I've slowly hit a plateau since then.
Do be agressive like you are with P.T. but don't over do, it can be a set back.
FYI I don't post much b/c mine is in left hand & arm but I try to keep
up.

Hi,

You might check out some teaching hospitals for Ketamine infusions. I
know before my daughter passed away last month we were looking into
having Ketamine infusions at the University of Utah. A study was done
and believe continuing through 2014. Around 18/23 patients had an
improvement in pain scores of 6.7/10. The study cites duration of
treatment varied dramatically. Initial infusions were 5 days times
4 hours each day with doses ranging from 10mg/hr to 80mg/hr. Study
says all were active in physical therapy during treatment period and all
patients were greater than six months from diagnoses at the time of
first infusion.

I personally, spoke to a staff member about cost. She said many
insurnace companies were paying. I asked for a ball park figure.
of the total cost. She said 5000.00 which is far less than costs I
had researched over the years.