Thread: Sweet relief!
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Old 03-12-2012, 08:45 AM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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Quote:
Originally Posted by Neko1221 View Post
Well I'm now 6 days out from my first block and the pain/immobility is back. I am crushed. I was euphoric Monday, Tuesday and most of Wednesday - even though I was still in some pain, it was NOTHING compared to what it had been. But, Wednesday night my pain started to increase and I had lost the ability to move my toes again. I told myself to go to sleep and when I woke up it would be better again... it wasnt. It was worse! And each day since it has increased. Today I'm back to the orginal pre-block pain. I hate it! I dont want to accept it! I dont feel like I can accept that this is something I'll struggle with for the rest of my life! I just cant! I just dont know where to turn and what to do next! I have an appointment with the pain doc on Tuesday, and I assume he'll want to do another block - and I will, but I want more! I want this over with! I feel like I've lost it! I actually sit and yell at my foot. I tell it that its fine! There are so many options for possible RSD treatment, but I've found that most do not take medical insurance. I do not have the money, as much as I wish I could pay for Ketamine, or some of the other treatment I've read about, I cant! I'd rob a bank for it, but since Im either on crutches or in a wheelchair, I doubt Id make it out before the police show up - and since my husband is a police officer I doubt he'd appriciate me breaking the law. I just feel like I've reached a whole new low in desperation... I feel hopeless and broken... I feel lost. I dont know, sorry Im just ranting now! For those of you that have suffered from this years and still manage to survive - youre my heroes! I've only had it for coming up on three months and each day Im unsure how I'll even get out of bed!
I am so sorry to hear that your pain has come back with a vengence. But please don't lose hope. You got several days of good relief and many only get a couple hours after their first block...so that should make you optimistic that you are early enough in this and that you DO respond to the blocks. Generally (if you respond to the blocks) if you do a series of them then the effects will last longer.

But blocks are only one piece of the puzzle. While you have the relief you need to do aggressive physical therapy...which means not just the outpatient physical therapy but also doing the exercises they give you for home...EVERY day throughout the day. I didn't get relief from the blocks (they actually caused my RSD to spread) but even without that sort of relief it was the physical therapy that really got the function back for me and got me out of the wheelchair. I still need to use a walker but at this point the main reason for that is that my balance is really bad since the spread (though it also allows me to put less weight on the ankle when the pain is at a high level). I find the walker much easier to use than the crutches and it has really given me a lot more freedom (the kind with 4 wheels and a seat).

Another good thing about physical therapy is that you might find some of the things they do at the outpatient center might give you additional relief. When I did outpatient physical therapy I discovered TENS and ultrasound which help me. The TENS is a godsend and when I spoke to my at home physical therapist last year (after the spread) she got me a portable TENS unit that I can wear while I walk and do therapy and it helps me a lot. I use the ultrasound heat therapy in the mornings after a hot bath and it seems to extend the period of relief I get (ie it takes longer for me to reach those 9-10 levels of pain).

I don't know where you live...but ballerina suggested to you on another thread that if you think you could travel that maybe you make an appointment at the clinic in Atlanta with Dr. Fugedy. If you are nervous about trying it on your own then this might be a good option. Here's a link to the website:

http://www.transcranialbrainstimulat...nt-stimulation

There are two sections on the website that I found really informative and I printed them out and took them to my doctor (who wrote the script for me to get the unit). One is about tdcs and chronic pain and the other is about tdcs and CRPS specifically. To get all the stuff for it cost about $300. Obviously if you have to travel to Atlanta and do a consult there then the cost will probably be more and I don't know how much insurance will cover (though that's definitely something you could discuss if you call the clinic).

Good luck...I know that there is no one and done sort of treatment for this. You generally need to do multiple therapies in combination to get it under control and possibly go into remission. Since you are still early into this then you just may go into remission so long as you stay actively involved in the treatments and do everything you can on your end to ensure follow up on the various therapies. Don't give up and don't become complacent thinking that there is nothing you can do and it just is what it is. If you cannot afford to go to Atlanta then I would recommend TRYING it on your own. It might take a little longer to figure it out (right protocol and electrode placement) but with no negative side effects all you have to lose is time (and very little money compared to other therapies).

Take care and good luck!

Last edited by catra121; 03-12-2012 at 11:18 AM.
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