Originally Posted by Hampster63
My goodness, I haven't been on here since August and I come to check up on everyone else and I see NO one has been here either. What's happening everyone??? Come on we need to keep in touch and keep ourselves going.
I for one sure wish there was an answer to RSD, I do know at this point the answer is not tDCS. Deb and I have been faithfully following doc's orders and doing what he suggests in the protocols. We have not had one single improvement in any aspect of our individual problems. We have had such faith and hopes in this treatment and are at such a loss as to why we haven't seen anything change. Even doc Fugedy is at a loss. YEA,you can believe it, he too has no idea why we haven't had any improvement. As a matter of fact he has no idea what to do next. We have all reached the end of our ropes (as they say). I would sure like to hear from somebody about their position at this point in the treatment routine. How are you all doing? Catra, Ballerina, Joydee etc. Lets get our heads together. Luv To all and hope to hear from you even if it's in pm. Thanks I
Hi Hampster. I was out of town last week and so I didn't see your post until just now.
I am VERY sorry to hear that neither Deb nor you have had ANY improvements. It makes me so sad as I really had high hopes that you would see SOME improvements. I wish that I knew what to tell you or had some other ideas that could offer you some sort of relief but other than those things that I have already talked about with regards to my tdcs treatments and my daily routines for pain relief...I don't have much to offer. But if you have any questions, anything you want to know, don't hesitate to ask as I will share again and again.
As for my progress...I will give an update.
I have now been back to work for almost 4 months. With the return to work has come a return of strength and endurance, loss of some of the weight I put on (though not the swelling in my upper body that came on all at once in three days once the spread started to those areas), and a return to mental health (not that I was ever horrible in this respect but I am much happier and in a better place than I was prior to my return to work). Work on the one hand has been difficult physically but has been far more beneficial than not in the grand scheme of things. I have bad days but so far they have been bearable.
Flip side...with the weather getting cooler I have been experiencing more pain and it has been a blow to my confidence. Don't get me wrong...I expected it...but it still sucks. I have serious concerns about how bad things will get as it gets even colder (right now the worst has been the temps in the mid 40s). Workload has also been heavy and VERY physical at work as we get ready for the holiday season (I work in big box retail as a manager). I worked a few extra days to get department moves done and that involved a lot of heavy lifting and it pretty much kicked my butt. On the one hand...those big moves are done and BECAUSE I busted my butt to get them done right then I shouldn't have any more to do until January. On the other hand...6 day weeks are quickly approaching and with the cooler weather...I am worried.
When the pain gets really bad at work (and it does sometimes...okay...often) I have been able to push through by focusing on that tasks that I have to complete. It should not be under estimated how big of a thing this is in helping me to keep going. When I was just at home and not working...no matter how much I tried to keep myself busy...the tasks just could not keep my mind occupied enough to overshadow the pain. At work...it's very different. I am able to push the pain back into a corner of my mind while I focus on all the things that I need to do and that need to get done. Several times I have been on the verge of tears and wanted to crawl into a corner and just sob...but I always get past it.
Better news is that when I am at home and there are no people around (besides my boyfriend) I can now get around MOST of the time without the walker. On bad days...I still need it...but when I don't have to worry about being bumped by other people or tripping over things in an unfamiliar environment I am doing pretty well without it. I look much like a drunkard with my tipsy way of walking...but it is getting better. Balance is still an issue so it takes a LOT of concentration to stay on my feet...but this is progress and I am very happy about it.
Let's see...what else. Well...I have purchased for myself knee and wrist braces. I do not have RSD in my knees but all the crawling I did last year when I couldn't walk or stand because of my RSD destroyed my knees. The wrist braces...well...I got them for days when I know I need to do physical work at work (ie heavy lifting and moving of fixtures). I know imobilization is bad and so I am limiting the use of them only to situations where I feel the benfits outweigh the risks (which is maybe a couple of hours a week). I found some wrist braces I really like that cushion my hands and those have worked out well in protecting them when I'm at work doing something very physical.
So all in all...things are going well. Sleep is no longer a problem at all for me. I consistently sleep 6-8 hours a night and this is almost always consecutive.
I have been able to keep up my tdcs treatments once a day almost every day...but I confess that I do miss them sometimes when I have a crazy schedule at work. I also have an hour commute each way to and from work. I've started listening to audiobooks in the car to keep my mind off the pain of the vibrations of the car rides. This doesn't always work but it is better than nothing. I also have a playlist on my ipod of instumental music which I use often to help take my mind of pain or to cover up noises that aggravate my pain.
That's about it in terms of my progress to date. In 19 days...I take my celebratory trip (for getting back to work and back on my feet) to Disney World with my family. It will be my first airplane ride since the spread, my first trip to Disney since the spread, and I am nervous as heck about it but also terribly excited. I think it will be fine...I'll have all my supplies with me to deal with flares and I will be prepared to step back and take it easy when I need to. I hope I am ready to deal with this sort of trip...I think I am but sometimes I just worry that I am over estimating my physical condition. I need to be careful to try and avoid those situations what could result in my getting injured which I know will be no easy task when you are talking about large crowds, lines, rides, and a million other things I probably am not even thinking about. The walker should help in that people will likely keep their distances like they do at work and when I go out...but then again some people don't pay attention to things around them and I could still get hurt badly and end up in a really bad flare very easily. Oh well...I will hope for the best and prepare for the worst.
Again...Hampster and Deb...I am very sorry to hear that you have not had any improvement. If there is anything I can do for you two, please let me know.