hi Nigel,

I was injured November 2006, torn rotator cuff, surgery #1 May 2007, lots of PT, surgery #2 April 2008, lots of PT, diagnosed RSD June 28, 2008.

I have CRPS I. The worst year was the second year after diagnosis, when I needed to take sick leave from my job. It spread from my shoulder up -to my neck and the back of my head. It is also in my right leg. I have other issues like sensitivity to noise, vibrations, spasms in stomach, numbness in feet, etc.

I don't know how to describe how bad I was. It depended on whether I used my arms for the most part. The head pain for me was and still is the worst. Migraines could put me down for the count for days, any kind of illness goes to my head first. I can't let my head get too cold or get caught in a breeze for too long. And no one can touch it, except my husband because I know he won't hurt me. When I was diagnosed in NJ by Dr. Getson he said I had Brachial Plexus Stretch injury.

I hope I answered your questions. Good luck, Sandy

Hey Sandy,

So you had quite a history before you tried the ketamine

Its quite strange as I can touch my knee and lower right leg without any problem. Sometimes I even massage it to distract the pain and encourage blood flow to it without any pain

One question I have REALLY been wanting to ask for a long time is - After doing some research, I understand that CRPS develops when an injury doesn't follow a normal healing path (please correct me if im wrong). In my case, my most probable cause of CRPS was due to a hamstring tendinitis injury which I kept straining/abusing over a period of two months, which eventually developed into CRPS.

At the moment, as weeks pass, my hamstring tendon & lower part of my hamstring are becoming more 'injured' as they are feeling more bruised, spasming/twitching more, more delicate to touch and I get that sharp pain and the throbbing/aching is more intense when I extend my knee. That being said, im 90% of the day in rest mode, just slowly walking around the house and trying to control my pain. I also have a goodish diet and im overall healthy.

So my questions are -

1.) Will my hamstring tendinitis remain 'unhealed' and worsen over time?

2.) If the ketamine procedure works, and takes away my RSD pain, will my tendinitis automatically start to heal normally?

3.) Should I be taking any specific nutrition/vitamins?

Furthermore, its strange that when I sleep at night, the pain/symptoms starts to decrease and when I wake up in the morning (my foot looks completely normal!) the pain/symptoms starts to build up till its unbearable till before I sleep at night. It's as though I need to be asleep for longer hours that am awake (if that makes any sense?).

Dear Nigel,

I wish i had the answers to your questions...RSD is such a weird, unpredictable beast. No one can say for sure what will happen to any of us. The best thing you can do for yourself is to try to stay active, stay informed, continue to eat well. This board is awesome for information, I learned so much from people here. And there are so many really good people that I love keeping in touch with.

I don't have tendinitis. Maybe someone that does can help you out.

The sleeping thing you describe is exactly the same with me. I am much better in the morning, usually. And worse at the end of the day. Sleep helps me a lot. I need help falling asleep, I take Ambien CR.

xoxo Sandy

The first appointment Dr Rohr has for me is on the 11th June. We must call back on the 7th to confirm. BDW although busy, he is a really nice guy from the little I know of him and am happy to be under his control.

In the mean time, I am trying my best to take my minde off the pain and make the most of my time at home. It really fustratest me that I cant physically beat this and its out of my control!

Are there any questions I should be asking the doctor in the mean time? Such as the hamstring tendon issue? Also, does anyone have any advise as to how I should prepare myself for the ketamine treatment?

Thanks

Hey guys,

Small update from my side,

Since I came back home in these two weeks, I have increased the Lyrica to 300mg x 2 together with 75-100mg Amytriptaline at night and have had the following improvements:



1.) I have had full night of sleep every night for the past two weeks (9-10hours).



2.) I have started to experience a slight improvement in overall pain (in particular to the burning - its more scattered rather than the whole lower leg).



3.) I have been increasing my mobility day by day and spending much more time on my feet (at home) + can now manage to go for 1 walk outside for 20min daily.


I am still in constant pain, experience temperature and color changes in both feet and still very restricted to the house due to the pain. So no real deduction in symptoms, however a slight deduction in overall pain + increased mobility + increase sleep (which helps physical pain from movement in the day)


Today I do not know where I stand. Is this slight improvement in pain + increase in mobility a sign that things might turn for the better or is the medication 'helping' the pain, thus allowing me to be more mobile to a certain extent? All I know is I want to get rid of the pain 1 way or another and get back to gym, fishing etc and don't want to 'control' it and learn to live with it. My thigh muscle is really weak and wasted and I really need to begin to work it somehow without aggravating the pain (very difficult).


I was supposed to fly up to Germany next week and do a 10 day ketamine inpatient treatment with doctor Rohr but now i am not sure what to do?? Should I keep taking it week by week and see where it gets me? Or should I waste no more time and do the treatment? I have now been around 7 months in pain and really want to take the right decision!


Can anyone please help me understand what is happening or what I should do as im not quite sure at the moment?



Thanks again,



Nigel

You have a shot at remission with the Ketamine. It may be your only one!
Once CRPS is "Old and Cold" (as Mike frequently reminds us) you likely to be stuck with just management.

Great news that you are getting around a little and getting some sleep.

Keep moving and bearing weight to keep the wasting at bay!!!!!!

So is there no way I can 'fight it out' slowly day by day? Keep moving more sleeping more and hopefully it will get better in time with the Lyrica? My symptoms are still on and off. Eg discolouration comes and goes and disapeers if I raise my leg and when I sleep at night. I also have no pain to touch and have little swelling on and off throught the day..the bottom line is I still have the pain but its has improved and become more managable..

Im really confused as to what I should do...keep at it this way and increasing mobility every day or rush to do the ketamine while my symptoms arent fully blown and sever...

Really dont want to take the wrong decision

Nigel:

I highly recommend that you consult with a doctor who has experience with Calmare Pain Therapy (Scrambler Therapy). The doctor who invented this wonderful treatment for chronic pain is at the University of Padua. Whether or not you have RSD/CRPS you are suffering from chronic pain. This treatment is non-invasive, and from my daughter's experience and also 2 other people we personally are acquainted with, it works and quickly.

My 30 yr. old athletic daughter has CRPS in one leg and required crutches to walk for almost two years. The future appeared dismal. After doing research we learned of Calmare Therapy Treatment and decided it was the best of the options available as all other options were very invasive. She also did not want to become doped on drugs...Lyrica plays with your brain as well as opiods, and they did not lessen her pain much. I will say that the treating doctor requested that she taper off drugs except for tylenol and ibiphropren before treatment. It was tough to do but she says well worth it.

We live in the States but I know this treatment is available in Europe. Our experience was that Pain Management doctors tend to respond with skepticism to Calmare. Could be because it hurts their business. My daughter had seven 45 minute treatments in January 2011 and has been pain free since and takes no meds. Do yourself a favor and look into Calmare before considering invasive procedures. Its not expensive compared to other options. Surgery can exacerbate CRPS. In my opinion its not a chance worth taking.

Good luck, Carol

P.S. I wouldn't be overly concerned about how closely you fit "the RSD diagnostic criteria"). Patients don't always exhibit all the symptoms at the same time.

I'm sorry that I have not been able to help with your questions the last month but just wanted to chime in on your last post.
I've had crps for over 4 years and it started when I was 24. I did not show all of the crps symptoms until the two year mark and so in my case it gradually became worse even with various medical treatments. I too wa extremely athletic before the crps. I would recommend that you still pursue the ketamine as it can possibly put your case into remission and it should bring you really great pain relief. I have found that oral medication management has provided me relief but has to be changed every few months because the medications only provide short-term relief. I think it's great that you are able to get out for walks again as that will definitly help in the long run... With medication managment I have been able to return to a couple of my favorite activities (winter skiing and wakeboarding) but it took a ton of physical therapy to get me to that point. I can do those activities on medication managment but it takes everything in me and I always flare up and can't walk for 24-48 hrs after participating in athletic activities.
In your case you were diagnosed relatively quickly so I would take that as a blessing and really utilize the time you have and go for the ketamine. Good luck and I hope you continue to get the relief you are looking for.
Sarah

Dear Nigel,

Unless you are truly not able to afford the ketamine treatments, I highly recommend that you follow through with your original plan. Right now you have a chance at remission, or at least partial remission. Those of that didn't have access to ketamine treatments until much later in our diagnosis merely attempt to maintain our RSD, we don't cure it.

Go for it. And ignore the Calmare posting, it's most likely an ad. There have been a number of them on here lately....

The best of luck....Sandy