I loved being called greedy. Thanks! At first I felt a bit guilty when symptom after symptom improved. I got real tired of telling my husband "If it never gets any better than this I am happy."

Now I can't wait to check another miserable symptom off the list.

Yep! I am indeed greedy and proud of it. No person with CRPS should have to settle for scraps!

What wonderful news that you will be potting up some flowers and enjoying time in the yard. Quite a change from the wheelchair days!

We are all greedy for you. We want you off the walker, off the cane, back to work and above all, pain free!

You can certainly use tDCS as an adjunct therapy to any treatment. Doing Ketamine and tDCS at the same time concerns me. You would not be able to tell which treatment was having a positive or negative effect.

You might want to consider tDCS first since it has no side effects and can be done comfortably at home. One of three things will happen, no response, some positive response, a great response. Then you may or may not need to try Ketamine.

Just a thought. Best of luck in whatever you decided.

Better days are ahead for you.

My suggestion would be to start tDCS treatments from home while you work on saving up the money. The out of pocket costs will only be about $300. Depending on your response you may or may not want/need ketamine infusions. You can do them both at the same time if that is something you want to do. I agree with ballerina though that you don't want to START them both at the same time because you won't know which one is helping (much like you don't want to start two new meds at the same time). Does that make sense? Especially if you will need to save up the money and work on getting insurance approval anyway...it seems like it would make sense to start the tDCS first while you are getting that all together. The out of pocket cost will be minimal to do this (and if insurance covers it then it will be even less than the $300 because that's just what it cost me to buy everything on my own) and if you need to save up the money anyway for a visit to Atlanta then you're not really "losing" time that way.

reluctant & Dr Fugedy
 

Yes, you read right. Deb and I were in Atlanta getting a treatment, equipment and getting to now Dr Fugedy while you were writing. The expense was for the equipment and the fact that we'll have Dr Fugedy on call when ever we need him for his time and energy that he so much invests in wanting to help people deal with CRPS at home, we spent $2000 plus airfair from NY and hotel. We only spent one night so that was cheap enough and we booked the flight 3 wks in advance and got the cheapest flight.

You'll have the same option, if you see him while in atlanta he'll arrange to have the unit and all instructions plus plenty of reading material ready for you. We saw him on a Saturday and spent about 4 hours with him learning what we would have taken days to read about. He's a wonderful doc and I know he'll be there for us if need be. Deb and I have been doing the Tx's for 9 days now and have not seen any improvement in our situations. Everyday I ask myself if I'm doing it correctly, why have I not had something change? I have a lot of problems getting this thing on properly since I live alone, I find it difficult getting the pads to slide under the ace bandage without pulling out my hair and then making sure they are wet enough and then being sure they are in the correct location. I keep wishing I had one more hand. I know it takes practice and I'll get the hang of it but that's the reason I haven't been on board here. I don't want to become a downer for the tDCS. I'm so happy to see and read about all the improvements that have been accomplished by the use of this Tx. I guess I too want to be greedy, let's all be greedy and place a little hope on whatever works for all of us.

Anyway reluctant, I would check with Dr Fugedy by phone about the ketamine and see what he suggests. He'll talk to you and possibly make a recommendation as to which will be most beneficial. Let him know you want to come see him and see what he recommends. Eitherway, in all my research and readings even if you do ketamine and it helps, it's very temporary. With the tDCS even if it's temp. you have the unit at home and can pick it up and do treatments whenever you wish without insurance approval or worrying about $$$ for ketamine. Wishing you all the best. Anything else I can help with just ask. Hampster

yet but the current research suggests that it may take a much longer period of time to get results. At least you have Dr. Fugedy at hand if you need to change protocols.

I know what you mean about wanting an extra hand. I find that the ace bandage slips. I am thinking of switching to a rubber band with holes in it to tighten or loosen it. I am thinking it might pull my hair less when I slide the pads into place.

You are not a downer! This thread is for everyone to post about and learn from everyone's experiences. I certainly had my share of downer posts on this thread.

I am so excited for you and Deb. How cool that you can just pick up the phone and give each other support!!!!!

Welcome to the growing membership of the greedy club!!!!!!!!

Better days are ahead!

Home tDCS treatment
 

Does anyone have thoughts/impressions of the "world's first open-source tDCS kit," the GoFlow? [You will have to Google it -- I apparently can't post a link because I'm a noob.]

It looks like beta kits will be available soon. I'm wondering if this will make home treatment easier, or if it is likely to be less effective.

I'm sorry to hear that you have not had positive results yet but keep faith. If this protocol doesn't work out then there are others. My first one was not so great but the second worked much better. I think CRPSjames said his friend tried it and the protocol James was using was a bust but the second one he tried worked great. Even ballerina said she tried several that were not effective. You're not a downer (though I did wish you had better news) and feel free to always share honest feedback here so we can support each other.

Just thought I would give a little update on my progress. I think I told you guys my plans for Monday and Tuesday were to work out in the garden. Oh my goodness...it was heavenly. We did a big shopping trip Monday to get flowers, planters, and supplies to BUILD a raised planter for veggies. I spent all afternoon Monday planting the flowers outside. It was warm and I felt GOOD. Well...but the end of the night I was pretty sore and my ankle started acting up...but my hands were surprisingly not too bad for all the work I put them through with the planting.

Then Tuesday I had my real challenge...trying to BUILD the raised planter. I surprised myself in that I was actually able to cut all the wood myself (once the boyfriend showed me how to use the saw that is). So that went alright. But when it came time to use the drill my body wouldn't cooperate. I couldn't even hold down the trigger on the drill that would drill more than the speed you expect it to go when the thing is dying. My boyfriend thought at first that I was just being overly cautious until I told him I couldn't pull the trigger any further (not to mention the weight of the stupid drill just about did me in). Oh well...at least I got to use the saw and cut all the wood.

But the best news of all was that yesterday it was so nice outside that I was able to sit out on our patio with short sleeves and no gloves! I still had to wear my scarf because it was breezy and my neck is still hyper sensitive...but my hands and my arms were okay. This morning they weren't but I think that's because it is cooler today. But yesterday in the sun I was able to sit on the patio with short sleeves which felt like a big win for me.

Oh...and Monday night I got SEVEN consecutive hours of sleep! Wow...can't remember the last time that happened when it wasn't drug induced. I felt so energized yesterday...probably contributed to my good day.

Today has been mostly a rest day but I have been going since last Thursday almost non stop with the graduation, mothers day parties, visiting with my dad who was in town for only 2 days, shopping, gardening, and building a planter. I feel almost like a normal human being...just with constant pain. But at least the pain is no longer stopping me from living my life. My discrimminating employer has been, but fingers crossed that THAT situation will be resolved some time next week (and hopefully for the good). Send good thoughts my way because if things go the way they should next week then I will be returning to work and life will return to some semblance of what it was prior to my accident that caused RSD. Fingers crossed...

Catra,

Your post brought tears to my eyes! I remember your older posts. I remember when you were happy to get three hours of sleep in a row. I remember your life prior to tDCS. I am absolutely amazed with what you have accomplished. NO GLOVES!!!!!!!! SHORT SLEEVE SHIRTS!!!!!!! POWER TOOLS!!!!!!! GARDENING!!!!!!!! SITTING ON THE PATIIO!!!!! I can hardly believe that your hands did not throw a temper tantrum.

You have certainly turned your life around and deserve so much credit. It is hard to believe what a great advocate you are for yourself and how you ruthlessly do your homework, whether it concerns protecting yourself from risky treatments or taking on an employer who has discriminated against you.

I have no doubt that you will return to work. Since you have kicked the butt of CRPS, dealing with any potential bad attitudes at work will be a piece of cake! Your boyfriend must think you are one amazing woman!!!

Congratulations!!!!!!!!!!!!!!!!!!

Even better days are ahead for you!!!!!!!!!!!!!!!!!

Thanks. I don't know that I would go so far as to say that I have kicked the butt of CRPS but I am certainly holding my own with it these days and not letting it stop me from living my life. I still have quite a bit of pain, the balance issues, etc that I am dealing with but life is just so much better for me now than it was. I am so grateful for every little thing that I can do which is why it feels good to celebrate these successes.

And...you know what? After everything that I have been through in the past year with RSD (not being able to walk or stand, having to crawl just to get to the bathroom, not being able to take care of myself and feed myself, dealing with work comp, etc)...bad attitudes at work and those people who are discriminating against me because of my disability are hardly even on my radar anymore. I have to deal with them, yes, but when you lose so much and have to fight to get it back you really get perspective on what is important in life. Family, friends, relationships, your health and emotional well being...these are the important things. While I absolutely want to return to this job and it is my right to be able to do so...if things don't work out I will be okay as long as I have all the other things. I can find a new job...money may be tight and it may be difficult...but with all those other pieces in place I will make it through.

Still hoping for the best though. :)