Nigel, Ketamine is most effective dealing with RSD in the early stage. That is where you are, that is where you want to be. Go for the Ketamine and do the whole 10 day treatment. Since you are getting some relief using the meds, kedamine may blast that disease into remission. Go for it!

Thanks for your reply and encouragment on the ketamine treatment.

Today I have discussed it with my father and we belive the ketamine is the best way forward in trying to get my life back!

Yes, I have increased my mobility, sleep and have managed to get out of the house a little more however the pain is still constant and extreamly restrictive.

We will contact the doctor and book the treatment as planned!

Thanks for your help guys

Now I just need to prepare myself mentaly and physically as best as possible I guess as 10 days seems quite a tough one

Just came back from the longest walk I have had since the RSD (maybe around 20min without a break and decided to walk up 4 stories of stairs which im really happy with ) My physical condition is slowly improving...

Just wanted to get a little more info on what to expect with the ketamine inpatient treatment. Will I just be stuck on the bed day and night for 10 days? Will I be on the drip? Will I be full of needels stuck and wires stuck to me? (hope not lol) Will I be able to get up a little or sit down during the treatment? (Asking this as sitting is my most comfortable possition for my knee and the pain)

I know I should prob ask these questions to the doc but he is away at the moment and would like to hear how its like for people who have actually experienced it..

Thanks

We finally managed to book a date for the 10 day ketamine treatment for the 12th of July!

I have still been improving my mobility daily and have increased my walk to 30min without the pain 'kicking in' which is a good sign.

My parents are worried as they think im getting better slowly slowly and can do without the treatment however still leaving it open for me.

I know I have improved however I see it that my chances of the treatment working are now greater and am ready to do the treatment with a very good chance of it working..whatever it takes I willl do to get rid of it completly. Am I making any sence? Im very new to this and want to be sure im taking the right decision at the right time..

Congratulations on booking the date, and yes, you are making perfect sense.

Mike

Thanks for your hep Mike!

Did some bike yesterday (7km) and today the pain has really shot up, can hardly bear weight...

We are now planning how we should organize it in terms of who should stay with me for the treatment. My dad is planning on staying with me for the first few days, then my mum should come up with my girlfriend for the end...

We are still not sure what to expect really...will I be able to move and talk and aware of my surroundings or will it be like one long dream? Will i need my family around me or is it best im left alone?

Another thing is will I be able to get up and go and travel after? Im planning on going to Finland after with my girlfriend as its very relaxed there.

Will be asking the doc these questions but a bit of opinions from some of you who have experienced it all will help loads!

Thanks,

Nigel

Hi,

After 1 year of batteling with CRPS behind my knee/foot, the time has come to try another pain relieving treatment. Till now, EVERYTHING I have tried has made me much worse but have manged to fight back and at least got back on my feet in Summer and kept as mobile as possibe and was even coping with a stationery bike.

To cut a long story short, after I had an epidural done, my leg was numb and stretched out to far than it was able to cope with. This made my crps worse and put me in a wheelchair for 2 months. 5 months after I am still struggling on crutches and can barley move with them with the crps symptoms slowly worsening together with my leg getting smaller and smaller.

I was physically improving slowly until last month and had set back after set back in a matter of around 4 weeks. I put this down to ‘overdoing it’ however cant understand why the pain just dosent want to calm down to normal and is always feeling hyped up and not allowing me to try short walks or light mobility in the pool anymore. I cant understand why it just wont calm down and allow me to at least progress physically and get back on my feet walking. I have been done light pool daily for 3 months without fail give or take 1 day hear and there and although increasing my pain after, I seemed to be benefiting physically and even took a few steps hear and there without the crutches after the pool. I just havent managed to get back in that rootine and have maybe fit in just 2 pool sessions in the past month! Obviously im starting to go back physically with the pain increasing. This is resulting in my knee to close up in spasm.

Due to the outcomes of past treatments at the best places, I swore I would never do any invasive stuff again! The problem is that my crps is out of control and had 3 appointments with our local pain doctor who is the head of the pain clinic. She has patients whith crps and is up to date with the condition. After she has examined my leg she confirmed the crps however she believes ther is a small nerve which is triggering it probably cause from the trauma/surgery to the area on the side/behind my keee. She is stressing that I must do the pulsed radio frequency to stop this nerve from trigerring and get it functioning normally which will break the muslce spasm and contraction. She did admit it will makemy crps worse for a few days but she believes that my pain will subside within 6 weeks. She confirmed that she has used PRF on her patients with crps with very optimistic outcomes with great pain relief for up to 6 months.

I have seached up some post on RF with negative outcomes however she has told me that she will never do RF and kill the nerves as this is very dangerous. She said there is a big difference between RF and PRF. During PFR the pulses do not heat up enough to cause any damage to the nerves, it just stunts them. She will do this in the place of most pain for the best result.

Any advice if this PRF is an option to consider? She said she could do a sim nerve block however she prefers PRF to start with.

Thanks for any help or suggestions ohh and I am taking lyrica and amytriptaline regarding medication..

I can't give you any advice about PRF, as that is not a treatment that I am familiar with. Did she advise you about what some of the side effects of this could be other than making your RSD worse for the short term? I would definitely want specifics about even just that particular thing...especially if you are already in a great deal of pain.

But I did want to ask if you have considered trying to use a walker instead of the crutches? I don't know if you are able to do any weight bearing at all on the RSD leg...but I have been using a 4-wheel walker with a seat and it is SO much better than when I was using crutches before. I've made great progress since I started using one and even though I can still only do a few steps without the walker, with it I am now able (after MONTHS and MONTHS of PT) to walk for a few hours with it. It really promotes a more normal walking pattern and I am very thankful to my physical therapist for recommending that I get one. I was able to order mine on Amazon.com for $120 and that is for a fairly sturdy, lightweight one with the bigger 8 inch wheels. Best investment I have made this past year. When I started out I could barely use it at all...but was slowly able to work myself up to using for longer periods of time.

It's also nice because with the seat and the canvas bag that is underneath the seat, I always have a place to sit down and now have a way to "carry" things because I can put them in the bag or on top of the seat as I walk around. This means I can carry food from one room to the other, I can always keep a bottle of water with me, I always have the things I might need at my fingertips no matter where I am. This is something that I could not do with the crutches.

Also, have you tried a TENS unit? I know they do not work for everyone but when my physical therapist got a portable one for me that I can have on while I walk around that has also been HUGE. It doesn't make the pain go completely away...but it gets it down to a level of 5-6 instead of 9-10 and alows me to function well enough to do the walking with the walker.

Also, have you tried lidocaine patches or creams? The patches don't help a lot for me on my RSD ankle...but sometimes a little is enough. Especially if I have been wearing the TENS unit all day on my ankle and want some relief at night. And they work great for me in other areas that get sore during rehab, like my knees, and also in areas when clothing may be a little tighter on my body like my neck if I am wearing a scarf, to just add that little extra layer of protection.

Also, have you read the post about the tDCS? It sounds like this may be a non invasive treatment that has the potential for great success. AND it is something that you could do at home (though of course you should always discuss any treatments with your doctor and/or physical therapist).

I'm only asking these things because I know that these are not invasive treatments and it seems like that is a concern of yours. My RSD spread after a lumbar sympathetic block, so I can understand why you would be opposed to treatments that involve needles. In the end it is really up to you to weigh the pros and cons of any particular treatment. I really, really hope that you find something to help you soon. It seems like it has been a long, frustrating road for you. Best of luck to you.

Thanks Catra, thats very helpful advice, especially regarding the walker to carry food etc around the house. With crutches its very difficult around the house and more strenuous. I have never tried one out but its worth thinking about it for home at least. would you say its harder with crutches than a walker? Im really hoping to remove them soon and get by without anything however need to get rid of this tightness. What is it with tightness and crps!? I know its important to move but very often it reacts and tightens up from movement

I hope someone who has tried PRF or has good knowledge/research can help me out

I definitely think that the walker is easier to use than the crutches. It has made things in my life much easier. I also don't have the soreness I had from using the crutches on my sides, arms, etc. My hands would sometimes get really sore in the beginning because I needed to lean on it so much but as I have improved that is not as much of an issue. And a big benefit of the 4 wheeled walker vs the crutches or a 2 wheel walker is that I do not get tired as fast. The energy it takes to use the crutches always tired me out really fast. With the walker I am not using much strength or energy to move the walker, which allows me to put more energy towards the act of walking itself. Other benefits for me with the walker are that it is more stable than the crutches (I feel less likely to trip or fall) and it sort of creates a protective bubble around me when out in public (crutches do too but it seems like it is more so with the walker). But I think the best thing is that you can walk normally with a 4 wheel walker.

What was really helpful for me too with the physical therapy was that I didn't necessarily start walking immediately. Movement doesn't HAVE to mean walking. There are things you can do sitting throughout the day to keep the limb moving when you are not necessarily able to get up and walk. Even now I try to do these if I am sitting for periods of time. I read that with RSD it is good to have equal movement and rest throughout the day vs just relying on doing the exercises all at once. I think that helped me a lot to get from being stuck in a wheelchair unable to stand or walk at all 6 months ago to where I am at now. The pain is still there of course...so far we haven't been able to really get that under control...but the function and strength are slowly coming back.