Now i am generalized CRPS in all 4 limbs and left side of face and am SIP. 2nd opinion Dr. gave treatment as ketamine coma in Mexico for $50, up front (Germany not doing them anymore) Thats not going to happen, then said i could try 3 day high dose ketamine. I was taking methadone to cover the pain. I tried all narcotics and methadone was the only one working. Dr. didnt agree with narcotics b/c he said if come off them i would go thru withdrawl and flare CRPS or skin becoming more sensative. I had recently read an article about how Methadone is a good choice for tx! My original Dr. said dont worry you are not going to be able to come off them b/c you have a chronic condition. I have read: tx is topicals, lyrica/neurontin, antidepressant-cymbalta, MAO inhib. and opoids! Is this just a ploy for me to come off narcotic and have a coma? Is anyone else on narcotics and how do you feel about it? I do fear my body becoming addicted and getting older being on narcotics but i dont get it. I still feel i missed my opportiunity to get the SCS, but i guess i have to move on. I dont know who to believe anymore. I came out of that Drs office thinking-you know what no one knows. I feel I listened to Drs and now i am general CRPS. I feel like now its my decision to choose my path and i dont know which to take. momof4

Not really sure I understand your question completely - the part about the Methadone is a little confusing to me but I might just be missing something...

So many people have had awful outcomes with the SCS that I don't think you missed anything at all there.

You didn't mention the Pain Pump as an option. Why not? Your doctor doesn't do them? Maybe you need to find one that does. Then you could come off the opiates without having withdrawals, and still be painfree. See Lostmary's posts and the new forum. The pain pump sounds like a viable option for many of us that have been sick for a while and have exhausted many of our other options.

Will your insurance company cover the cost of the 3 day ketamine infusions? It's worth a shot before you try the pain pump.

The RSDSA.org website has a wonderful database of articles on these issues.

Like I said above, I wouldn't waste too much time worrying about a missed opportunity with the SCS. After what I have read about them, I wouldn't ever want one - not only because I would be dealing with a rep from the company that sells them after the surgery, instead of a medical professional; when the medical professional that installed likely pocketed a huge kickback from the transaction (remember - I live in RI where this kind of stuff is routine). But also because the SCS can cause infections, leads move and need to be fixed over and over, movement is restricted for the rest of your life, RSD usually spreads from the surgery, etc. They are just very problematic.

Good luck to you.

XOXOX Sandy

ketamine, ketamine, ketamine!!!! It is worrrth it!!!!! It gave me my life back, I still have a little pain here and there, and am still taking 2 meds (cymbalta, and remeron to sleep, but then again I have had sleep problems for years prior to rsd)... My answer to everyone is ketamine You pee the ketamine out the next day, so it isnt like putting medicine in you where your body is dependent upon it. It resets your pain transmitters (never did I think I would know this much about ketamine ) It is worth it, for all the side effects we have going through medicine to medicine, why not take a chance on something for 3 days where you dont have to take pills daily!!!!!!!!!!!!! If you have questions feel free to pm me

Hannah, Im glad to hear the ketamine worked for you. Please tell me was your pain well localized or was it spread to other areas? Did you do 3, 5 or 10 day ketamine? How long ago did you have it and have you had boosters? thanks. Heard the Magnesium infusion helps the same but not as dangerous-anyone have that? momof4

Please know... Because no two of us with RSD are the same, that no medicines will treat us all the same.

Ketamine is not for everyone and will not work for everyone.

I was offered this but after much research with my doctor... including him talking repeatedly with Dr. Schwartzman and Dr. Kirkpatrick it was discovered that since I have severe allergic reactions to narcotic and synthetic pain medicines and my body metabolizes anesthetic medicines at a rapid pace that Ketamine was NOT an option.

Please research as much as you can with your doctor before you rule out or accept this treatment.


Abbie

I've been on methadone for almost 20 years. I'm fine with it.
There is the constipation, if I don't get enough exercise, it's easily dealt with.
Also, if my dose wears off, I DO get pain, and probably some sort of reaction that's over and above the normal CRPS pain. I was told to think of it like Blood Pressure medicine, I'll take it forever, or until something better comes along. It's remarkably inexpensive too.

I do take Cymbalta and diazepam, along with migraine meds.

My pain is more than crps.

Wish you luck with your decision!

Pete

Hi Momof4, I totally agree with Sandy on the SCS. I also have generalized RSD full body SIP. My Dr. is a neurologist, psychiatrist, and pharmacologist. He is very conservative and I have been seeing him 6th year. He is against Methadone. I have been taking vicodin for years. About 6 months ago I was able to go down from 6 a day to 4 . My Dr. believes in muli meds to minimize the opiads. I also take Lorazepam also reduced from 6 to 4. I take 2 blood pressure meds. Cymbalta 120 mg. and a sleeping pill. I used to take 3200 mg neurotin but was able to slowly go off and the electric jerk and jolts did not come thru. I hated that med-weight gain. I have a window of time to drive. I am totally mobile with the exception of one hand 50% range of motion. It was 4 years before I was diagnosed and had delay of treatment of the hand.
I did go thru 150 physical therapy treatments for both frozen shoulders, but got full range of motion back- that was before diagnosis of RSD. I had a year remission after each shoulder
My third round with RSD came while water skiing. I pulled a nerve in one hand getting up out of the water. Misdianosed as RA- Changed Drs. and diagnosed with RSD in one min. confirmed with nuclear med. equipment.
My Dr. just built two clinics with HBOT and I'm going to try the HBOT. I also have trigeminal nerve disorder-feels like an ice pick in temple. loss of feeling down left side of face. I also have internal pelvic RSD If the HBOT doesn't work, I'll consider Ketamine.
How are you doing? I was devasted when a new neuro said I had generalized. He suggested seeing a psychiatrist. I didn't like his two suggestions, in fact I didn't like him. So I found one on my own. The first visit I knew he could help me. He is a gem. I had already had over 2 years of counseling with a psychologist when my parents died. and that helped. but as we both know, this is a different animal.
Are you mobile? have you had pt. I found massage therapy very good. I started right away. and had it each time just before the pt. This is all before I was diagnosed with RSD. Now, I find swimming pool 86 degrees, very helpful in keep mobile and even reversing my toes that were curling. They went back to touching the floor in 4 months in the pool.
Really hope the best for you. please let us know how you are doing? Your friend, loretta with soft hugs

As we are all aware... not one treatment or medicine works the same for any of us..so who is to know what affect we'll all get..there now with that said...

We go thru the high and lows of treatment and interventions...SCS, blocks..Ketamine...on and on... I am beginning to feel a bit like the fury fella running on the wheel..anyone else???? I am starting to side with one of our friends who once said..I am done..DONE.. done..with it all..I am an RSD mess and that is the way I will live... one good thing..we won't die from it...thats what they say right???

Guess I am sounding tired..but what I really want to say is..I wish I had a magic wand..cuz if I did ..I would love to make you all here feel better and rid of your RSD....

Momf4... I am so sorry on what you should really do...as it seems we are all hitting the part in the road in which way to turn.. Our Dr.'s still go home at night ... painfree themselves..leaving us lie awake at night wondering what tomorrow has in store for us.. Please let us know how you are doing.. We are your friends....

You, and all of my friends here are in my prayers....

Kathy

Kathy--

Don't EVER GIVE UP!! That's what WC wants me to do - that's why they have tormented me, harassed me, harassed my treating physicians and other providers...Mike's answer was AWESOME - there is an answer for us - in the long run. It just takes time, which is so darned frustrating. We wait FOREVER for phone calls, and approvals, and appts, and treatments, etc. And for me, I am not made of money, so we need the cooperation of the insurance company, which is NOT going to happen easily. EVERYTHING is a battle, nothing falls in our lap, we have to work hard for it. BUT WE CAN'T GIVE UP. If ketamine is not the answer for us, then a pain pump likely may be. We need to ensure that we always have a Plan A and a Plan B. And maybe even a Plan C. You are going to see Dr. S soon - he knows so much, and can guide you to the best of the best. You hang in there...It's almost here.

FMichael - I have said it before, you are awesome!!!... as your were composing your posting I was in the process of trying to wean down off of some of my opiods. The brain fog and depression and crying spells are creating quality of life issues, and I think cutting down on some of my meds will make me better off - your posting was so timely. I just have trouble with the head and neck pain...they tend to get worse on lower levels of meds...but I want to give it at least several days.


Love and Peace, Sandy

Hi I am also thinking of ketamine. A few thoughts I agree that it is so hard to make treatment choices. We all differ so much. I think what I like about my last pain doc out of many is that he started at the least invasive and worked up. Now i have seen a couple pain docs who feel narcotics in the long term were not for me either. Like you said because it is chronic and actually your brain begins to process pain more. Again though I don't judge anyone for being on them here if it helps them. I was also suggested a scs but after 2 procedures that were less invasive that increased my pain level this was ruled out for the time being. I am not seeing are you on any meds like neurotnin etc? Also I had been suggested anti inflammatory meds. For me in a flare up this does not cut it but for some it may. I wish I had an answer for you and unfortunatly docs do take guesses at us. For me it is weighing the pros and cons and feeling comfortable with the doc. Hang in there and hold to hope. I always say it just takes 1 doc to look out of the box to make such a difference