Hi,

I was just diagnosed with crps/rsd monday. the pm dr put me on a ketamine cream ( which i will start tomorrow-have to have it mixed) has anyone used this? what about se? I also have 2 bad disc's and the rsd symptoms started after the 4th cortisone injection. I am kind of at a loss as what to do-it is w/c and i'm sure many of you know how difficult that can be. i happened to find this website by accident but there seems to be a wealth of info.
any info thoughts, ect are most welcomed

Hi there. Much support here indeed. Also check out the RSDSA site at: http://www.rsds.org/index2.html American RSD Hope isn't half bad either: http://www.rsdhope.org/

And yes, I put a ketamine/lidocaine/gabapentine gel on my feet at night, and at least for me it works pretty well on burning pain, even if it just provides temporary relief.

Important question that will guide some folks in their responses: how long were you symptomatic before you got the Dx? Not to hold you in suspense, some therapies work better if they are applied sooner rather than later in the course of the disease. Others aren't so picky.

Glad to meet you, sorry it had to be under these circumstances.

Mike
Univ. of Minn., B.S. (Econ.) 1979 - origionally from Rochester

bubulahj,

Welcome! You are correct that there is a wealth of information here. We have a lot of experience in dealing with RSD and the various treatments. Two things to keep in mind:

1) With a few exceptions, we are not medical people here. I know there are some nurses and therapists and there may even be a doctor or two. But by and large, we are "regular people" who have RSD/CRPS in common, sharing our experiences.

2) Treatments, drugs and therapies work differently with different patients. You may read here that "Acme Miracle Drug" works great, but it does nothing for you. Don't get discouraged, that is common. Take our opinions at large when discussing options with your doctors.

All the best to you --

Mike (a different Mike)

I am truly sorry you have to deal with this monster. You will find this forum is awesome and the members really care. This group has helped me learn so much about CRPS, how others are being treated and what medications are out there and the side effects. I hop on several times a day just reading posts and checking out links thirsty for knowledge and comfort. This crazy condition has changed my life completely and has tossed me into a state of mental exhaustion. Finding a way to express myself, share thoughts and concerns with others has helped me a lot.

My advice to you is find a good Pain Specialist and work closely with your doctor(s) to address the various issues you face. I have found it helpful to keep a daily pain diary so I can see what activites, food and medications help or cause flare-ups. Because I am fairly new to this RSD thing too, I found this has really helped me communicate my pain and symptoms to both my Ortho and Pain Specialist better.

I wish you the best!

Welcome to the forum!

If you were, there is some hope you can be 'cured', too late for most of us. Took the buggers five years to figure out what was wrong with me. Not my head, nobody seems to know quite what my problem is there...lol...(hint; too much fun, of the illicit sort) Now I'm seeing what appears to be a spread of this horror, and I'm scared and getting fairly disillusioned. This site is awesome for info, you got right lucky to find it. Ask, and ye shall receive...lol...later, Smoke

Hi and Welcome bubulahj,
I happy you found us, but not having RSD. The best thing to go is research as much as you can. Another source of good info. is rsdrx.com A Dr. from Florida just retired , but left the website up. The puzzles are questions and answers, about 140 questions. Getting a knowledgeable Dr. is extremely important. Having a neurologist is great. A pain management Dr. is good. My Dr. is a neuro. phychiatrist, and pharmacologist in one. WC
RSDers usually end up getting an attorney. Don't let them put you off in getting early treatment that is so important. There is no cure for RSD and some of us have it full body and internally. Getting treatment early gives you the best chance of remission. There can be a lot of complications with RSD like: dental problems ( loss of bone) not being aboe t9 work again, not being able to drive (because of meds or seizures) our energy level is down, thus someone else needs to do the heavy cleaning of our home. most of us are on several medications, that insurance doesn't cover. ketamine treatment is expensive, hbot treatment, insurance doesn't cover. There are some WC patients that get lifetime medical
that is put in escrow by WC. Physical therapy and (massage therapy) which isn't covered by most insurnce companies, kept me out of a wheel chair so far and kept me from being crippled in my hands and feet. I'm so grateful that I had private insurance for 150 p.t.
and own funds for 200 plus massage treatments. I've had RSD 13 years, got it next day after surgery, but wasn't diagnosed for 4 years. I didn't sue- so over the years the expenses really add up. The more informed you are the better.
A lot of us have felt the need to get help from a psychiatrist or psychologist to help us adjust to a life altering disorder. We all go thru a grieving process, because there are many losses. We are all here for you. We know our friends here really understand what RSD is like, even thought we are all different. Have RSD, in different parts of our body.,,
I hope I haven't overwhelmed you. I've shared this out of concern, as delay of treatment costs us in more than one way. Please know you can ask anything. Take care and we hope the best for you, loretta

my was W/c I had a big fight in court with this in minnsota , my case even wrote some case law hang in there

at least youve got w/c....... get early treatment,,,hit it with the kitchen sink,,,the early stages is where you can as my neuro said ,bite the head off the serpant,,,,it grows like wild fire ,,,for some people like myself,,,and others it lingers in one spot for yrs, ask away,,you can bend our ears here,,,,,,,,good luck,,,,and may God put you and grant us all a remission,,,,,,,,,,,,,bobber

I am sorry to have to meet you under the circumstance of RSD/CRPS. You will find positive support and fit in with this forum. Please note that each one of us is an individual, and with that truth, an umbrella does not cover the lot of us concerning the by-products of the disease. Please share your feelings with an open heart as you will not be banished should your opinion differ from another on the forum.
Take a deep breath, in time you will discover a wealth of knowledge that will assist you while facing RSD/CRPS.
I am available for you should you need an ear