All these things are a good idea, up until the last sentence. YOU didn't need drugs. Many docs hesitate to even make a firm RSD diagnosis within a short period of time--part of the problem with getting early aggressive treatment in the "window" for best chance at remission. The response to that problem has been diagnosing some patients too quickly.

Ketamine has changed the lives of many RSD patients.

Hi daylillyfan, who is your doc at the clev clinic? Is Stanton-Hicks still there? I'm considering seeing a doc that hicks mentered there. Thanks, loretta

Flo, tell us more about your treatment!!! Sounds encouraging. loretta

Flo53

You must be aware that there are people who post and read here who are in absolute misery and desperation. Many are depressed, some are suicidal and feel unable to cope, many are frightened and struggling and all are in unrelenting pain. Many of us have much greater experience with this condition than yourself as you say you have only had it a year. It is entirely possible your body is simply making its own slow recovery without any of the things you think work actually contributing to that.

To appear out of nowhere with no previous posting history and tell people that you are involved in a trial of the next great super-safe cure for CRPS but without giving full disclosure and information about that is cruel and unfair. It preys upon the desperate and the vulnerable people.

I am not suggesting you are one, but this board has seen people 'planted' here to promote various untested and 'out there' supposed cures which make all kinds of claims about their testing and clinical trials which don't stand up to scrutiny. This is just a way for unscrupulous people to make money out of suffering and desperation. Usually these devices and 'treatments' turn out to be bogus or the clinical trials don't exist or are so badly done they are worthless.

Your unorthodox views about medication demonstrate a very narrow minded understanding of the severity of this condition and the extreme disability it can bring. For many CRPS patients, it is only prescribed medication that makes their quality of life bearable enough to go on. For others, it is invasive intervention and medication that is likely to prevent the severity of their pain getting worse. You can't say " pain meds mess people up". There can be side effects but not always and these are in each case weighed up by each individual.

Your advice for recovery isn't supported by any reputable evidence. It's fine for you to think its the way to go but don't ram it at other people who are coping on tried and tested regimes for CRPS as the only way to go.

I'm not trying to be mean to you but you have been insensitive to the other users of these boards and not very mindful of what life with long term CRPS is actually like for the vast majority of people who post here. Please think about that before you post any more 'tantalising' cure information without telling people exactly what the device is/what it's supposed to do.

Loretta, I'll PM you.

Everyone here has good points but i do agree pretty much a good % of people with rsd only find a barable relife with medacation nerve or pain. Ive had rsd since i was born and one of the first things i learned to say was owie my legs my poor dad spent hours rubbing giving my childrens tylonel and putting heating pads on my legs i couldnt do normal activities. I was diagnosed at 12 and have only went to get real help with meds last year after my son was born because i was so used to the pain i used to be able to literaly grin and bare it. Now it cripples me. I thank the lord everytime i refill my rx im also trying out a new physical therapy approch i think its called counter_pressure and it actually helped with my pain level for about 30min today....thats a big big deal! Lol has anyone ever heard of it or tried it?

never heard of counter_pressure but I'm happy it's helping you a little, warm water is the best thing that's helped for me

reading all the studies/trials reports is important they do show that ketamine helps in a large % of rsd patients

I live in the UK and can't find any info on getting the infusion done, good luck everyone whatever you try

Counter-pressure is just pressure applied against the body to try and minimise the sensation of pain. for example, its used in 'natural childbirth' to help manage labour pain - it's essentially just putting pressure on an area of discomfort or pain such as the lower back. A compression bandage applied to a swollen knee would be another example of counter pressure. Some trigger point type massage involves counter pressure - the therapist presses hard on a sore spot, gradually reducing the pressure and the underlying pain gradually fades away.

In the UK, you will nowadays need to refer to the Royal College of Physicians publication which provides the UK guidelines for diagnosis and treatment of CRPS. It was issued May 2012. Low dose Ketamine infusion gets nothing more than a passing mention but is still regarded as experimental and consequently the guidance advises that it should only be performed in a research setting. You would need to identify an individual clinician prepared to carry it out at a suitable centre (nothing is listed to give any hint as to where/whom) It may even be that you could only access this treatment option as part of formal clinical trial if/when someone decides to run one in the UK.

flo what is this device you are talking about?

Yes Flo 53- Could you please tell us about this new treatment/device?
I have horrible systemic nerve pain when my meds wear off. Thank you.