Good Luck!!

jim&suzy

Each person with CRPS who gets their life back is a victory for all of us. I am here to cheer you on and my wish for you is that you come out pain free!

Keep us posted. Wishing you the best!

Nicole

Hi Nigel, Best of luck to you as you receive your treatment. Let us know how you are making out. I've had ketamine before and usually the higher the dose the more you will be out of it. I felt very paranoid on it and was in and out of it most of the time. I did hear and see alot but had a hard time making the words come out of my mouth. You will be extremely fatigued once you get out of the hospital. The more you sleep through it and afterwards the better it works on your brain. No caffeine during the treatment either. I will keep you in my prayers as I pray for everyone each night.
Take care,
kathy d

Good Luck Nigel.

Gabbycakes

Best of luck to you on your treatment, please keep us posted

Good luck during your treatment. Kathy's advice is exactly what I would say and the only other thing I have to contribute is to make sure you have something to entertain you for the times you are awake. During my treatment I slept about 15-18hrs a day but found myself to be extremely bored during the few hours I was awake. I recommend having access to TV, magazines, music & movies. The above items provided a great distraction from the treatment process / stress of being stuck in bed 24 hrs a day. You will be in my prayers and I'm hopeful the ketamine treatment will provide you the relief that you have been searching for.
Sarah

Thanks everyone for your support

Noting has changed much since yesterday...like the doctor said, it will be a slow build up and will need to wait a few more days to feel the real affect of the treatment...I doubled the dose today considering I felt normal this morning and will keep climbing till Monday...we have to wait and see I guess

Regarding company, I have my girlfriend with me hear who I love being with. I am very lucky to have her stay with me the whole way. Also, all going well, my dad will be with me till sunday. I also have an iPad which helps to keep me occupied...really eager to reach the right dose to hopefully take the pain away!

Ended my 15 day ketamine infusion last thursday without any pain relief. The doctor decided to try out an epidural in between the infusion which resulted in eliminating my rsd pain totally however i was just left with excruciating cutting pain behind my knee. Was not able to bend my knee to counteract it as my legs were total numb and wasnt able to move a toe for the first night or move my legs for 3 days. Experienced rsd pain relief and no symptoms for 1.5 days however the cutting pain just kept on getting worse. The doctor understood that it was my hamstring tendonitis that was the underlying problem / cause of rsd and not my acl as we thought. Due to the tendon taking so much pressure due to the epidural, it was badly injured again which caused my rsd to shoot up to a 9 and sometimes even 10. I have never experienced so much pain in these 8 months. Now due to the tendon being so badly aggravated, im not even able to get my kne out of a 90 degrees position and not able to move from a chair or stand up. Although unlucky, this is a huge set back for me as i came into this treatment walking for 40min and biking and swiming to and now not able to move a toe amd must put my knee in a brace for the tendon to heal enough to start to take baby steps. This might take 4 weeks maybe. Have to wait for the doctor tomorrow to see what to do next as i must fly on wednesday back home but not even able to move to the toilet!

The unhealed tendon might be to blam for the ketamine not to work as the underlying cause of my rsd had not healed yet. I am surprised though that even with quite a good dose up to 71mg/hr i felt completly normal with not one side effect.

I have quite a situation now as i need to stay imobilized for quite a while to allow the tendon to heal enough to start to bear weight however this is not good for the crps and my foot is already starting to swell. Whats good for one problem is bad for the other and vice verca. Dont think i have any option but to let my tendon heal even though my knee is really weak and thats not a good thing to have with rsd....

Nigel -

Very sorry to hear of this. But good to know of the underlying problem, just be sure you have the best physiotherapy while the tendon is healing.

Really so sorry . . . .

Mike

Hey mike,

Dont think pt will really be an option, at least for the first 6 weeks until the brace comes off and can start to slowly bare weight. Might get a home ultrasound to help the tendon heal asap.

I am realising that there is a big link between my tendon and crps. If i stress my tendon throughout the day then the crps will get angry at night. The more i take care of my tendon the less the crps bothers me. I know imobilizing for 6 weeks is not good for the crps but if im helping the tendon then my crps should remain quite. I have two important questions to ask the doctor but i would like to hear your opinion on them.

1. Once my tendon is the underlying problem, does it mean i have to fully heal it in order to heal my crps.

2. Could my crps automatically go once the tendon is FULLY healed?

3. Could i aggravate/progress my crps by goining in a brace to keep my knee 90 degrees for <6> weeks?

Thanks,

Nigel