[ANTHONY JOHN]

this is not a cure for CRPS and we who suffer from this illness should not be experimented on with this manmade drug!I have just had the treatment in France and it's horrible.It didn't cure me so they wish to try again but what are the long term effects,they don't know and they wouldn't do it to themselves.At least they will only give it to you a maximum of 3 times??????
i would like people to reply to me of their experiences ,did it help ,how you felt ,did you have side effects.
i don't think it should be allowed,we are not guinea pigs!

[Morgan Herritage]

If you use the search engine, I'm sure many threads with your topic will come up.

[daylilyfan]

If I could afford it I might consider it. However, my doc at Clev Clinic said I've had RSD to long (12 years) that I am not a good candidate. Yet, I heard of another doc there that does the infusions no matter how long a person has had RSD.

[Neurochic]

Anthony John

I reckon that most CRPS patients are aware that ketamine is only providing symptomatic relief and isn't a 'cure'. For some people, the symptomatic relief will be so substantial that they will feel almost as though they have been 'cured'. Like absolutely everything in medical science, there will be others for whom Ketamine based treatments may provide minimal or no effective relief. This may be because the particular protocol used wasn't effective or because the person just fails to respond to the ketamine.

It is often frustrating with a poorly understood condition like CRPS - it can feel very much as though agreeing to potential treatments is like being 'experimented on'. However, that is just a fact of life with a condition like this. Everyone responds differently to different interventions so it is inevitable that most of the process is trial and error and involves a bit of experimentation. It's especially tough when something you hope is going to help actually makes you feel worse.

The reality of the use of ketamine in CRPS treatment is that it is still pretty much experimental. Anyone agreeing to any ketamine infusion protocol would be fairly clear of that from any prior reading they do. There are various different protocols that doctors round the world are working with or trialling. It has proved impossible to conduct any clinical trials involving 'blinding' with ketamine because it is patently obvious from the side effects if someone is receiving a placebo. The numbers of people involved are necessarily, relatively small. So, yes, it is still a potential treatment that is to a large extent in its infancy and I'm sure there will be many years of experimentation still to come. That said, ketamine administered in intravenous form is certainly not new - it has been used in anaesthetic practice for decades so there is some knowledge of the drug and its effects, both short and long term.

It might help people reply to you if they understood exactly what ketamine administration protocol you had. In other words, what dosage, how slowly was it increased, how many consecutive days did you receive it for and so on? Your post might frighten some people who are considering ketamine so if they know the details of your treatment it might put their minds at rest. Other people may be able to give you information about how their ketamine treatment was done - doctors, especially in the USA are using a wide variety of different protocols for ketamine. Perhaps having it administered differently would have given you a different (and better) outcome.

I have been living with CRPS for over 5 years and have tried everything currently available that could potentially help me, including travelling to other countries to consult global leaders in the research and treatment of CRPS. For me, the 'experimentation' has been worth it - I know that I have done everything I possibly could so it has been easier for me to focus all my energy into acceptance. I don't have the emotional roller coaster of hoping the next thing i try will fix me so I can get on with living the life I have as positively as I can. I always keep an eye on any developments in treatment in case something new comes along but I'm not holding my breath!

[SandyRI]

There is so much misinformation in this thread I don't even know where to begin.....

All I can say is that ketamine infusions have given me my life back, I returned to my full time job 2 months after starting the treatments a few years ago.

Prior to ketamine, I tried PT, meds, blocks and lidocaine infusions.

There are a few widely used protocols, for me the 10 day low dose outpatient protocol was very effective. I currently receive 250 mg over a 4 hour period every 4 weeks (I just dropped down from 2 days a month). There are lots of adjunct meds added to my infusions. My doctor is Pradeep Chopra in Pawtucket, RI.

Ketamine infusions have a remarkably high success rate - close to 80%. No other treatment for RSD comes even close to that.

Please feel free to message me if you have any questions. Sandy

[alaska49]

Ketamine has given back my life also Iam not in the hsoptial veery 2-3 weeks for up to 10 days each.

My prior treatments include, Meds, blocks, epidurals, PT, OT, Spinal Stimulater, Lidocain infsuions, calmare treatments, then finally the ketamine

[MrSome]

From the 2 years I've known about RSD/CRPS, most people I've read about, had good things to say about Ketamine. I know some people have side effects, but even they say that most of the side effects are worth it to have relief (even if only temporary) from the pain.

[flo53]

many treatments out there are out of reach for many rsd people, but there are new developments on the horizon that will be affordable for many to alleviate their pain. I am an advocate for what is bio friendly to our bodies. Giving our bodies nutrition, rest, destressing, having a positive mind, movement and getting out. I have had rsd for 1 year now and I am feeling much better. you don't need drugs, you need to use what is non invasive.

[flo53]

Just a thought to think about. Drugs are not non-invasive. Their are side effects. Probably because the body knows what is good for it. Drugs are expensive and they line the pharmaceuticals pockets while they destroy our bodies. I am a believer in non- invasive approaches. There is some new technology about to come out and I have used this technology for 8 mos thru a research company and my swelling, sensitivity, pain have improved. It is not expensive. It feels good, I sleep better at night. I have better days. My pain specialist gives me the go to continue as she has noticed amazing improvement with my left arm/hand. Pain meds mess people up, and this device doesnt. I love what it has done for me . Please don't use Ketamine ever. Remember what goes in us we pay later for. Your body is an amazing machine it can heal if given time and rest and tlc.

[LIT LOVE]

Originally Posted by flo53

Just a thought to think about. Drugs are not non-invasive. Their are side effects. Probably because the body knows what is good for it. Drugs are expensive and they line the pharmaceuticals pockets while they destroy our bodies. I am a believer in non- invasive approaches. There is some new technology about to come out and I have used this technology for 8 mos thru a research company and my swelling, sensitivity, pain have improved. It is not expensive. It feels good, I sleep better at night. I have better days. My pain specialist gives me the go to continue as she has noticed amazing improvement with my left arm/hand. Pain meds mess people up, and this device doesnt. I love what it has done for me . Please don't use Ketamine ever. Remember what goes in us we pay later for. Your body is an amazing machine it can heal if given time and rest and tlc.

Just because this was your experience, doesn't mean it'll be someone else's. There are less severe cases of RSD, and misdiagnosed cases as well. Many of us went years without meds before opting to go that route, including trying Ketamine. Until you walk in someone else's shoes, these comments are naive in the least...