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!