Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-09-2018, 06:47 AM #1
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Default Just a little update

I was just discussing this with someone else and wanted to share here too...because I really am feeling pretty blessed at the moment and thankful for being able to get the DRG stimulator for my leg pain last December before insurance changed their policy to not cover it a little over a month ago (delaying the possibility of me getting it for the upper body).

Flare ups...there has been a huge change in how flare ups are for me in my leg since the DRG. First...there are a lot less of them and most only bring me up to a 6 or so on the pain scale which is significantly less than before and a level I can function at. I've only had 3 flare ups since December that were REALLY bad, level 10 pain flare ups. And for all of my flare ups except 1 that I can remember...the flare up was done in less than 24 hours. I had a really bad level 10 pain level flare up Friday night...and by Saturday afternoon I was back to baseline. That's just..incredible. I tell people this treatment has been life changing for me and it's true. And I'm someone who didn't get any functional relief from medications...so this is really the only thing that has worked at all...and thankfully it works really well.

I hope the insurance company changes their policy soon to allow DRG to be covered without a fight because there is the possibility to bring so much relief to people. I talk to the dr on Thursday and can hopefully get a feel for what he thinks about my chances of getting the DRG stimulator for my upper body in the near future because I really want to try to see if I can get this same relief in my hands.

In sadder news...I think my small fiber neuropathy is getting worse. I have to talk that over with the doctor too but I'm losing more sensation in my hands and having more electrical shocking type pains...particularly in my right foot which is one of the few areas where I do not have RSD. Let me tell you...those pains compared to RSD are nothing and they usually only last a couple of minutes...more of an annoyance than anything else to me...but it definitely is worsening so I do want to see if there's anything that can be done to either slow it down or stop it from getting worse. Hopefully my doctor has some thoughts on that when I see him Thursday.
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Old 07-09-2018, 02:14 PM #2
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Thank you for sharing your experiences with your DRG Stimulator. It has been a life changer for me as well and I can't believe that insurance no longer covers it. I guess we're just a few of the lucky ones who had the opportunity to try it out before they changed that. Sorry to hear that the SFN seems to be getting worse, but I am so happy for you that you are finally getting the relief you deserve from the CRPS.
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Old 07-09-2018, 08:16 PM #3
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Quote:
Originally Posted by PurpleFoot721 View Post
Thank you for sharing your experiences with your DRG Stimulator. It has been a life changer for me as well and I can't believe that insurance no longer covers it. I guess we're just a few of the lucky ones who had the opportunity to try it out before they changed that. Sorry to hear that the SFN seems to be getting worse, but I am so happy for you that you are finally getting the relief you deserve from the CRPS.
I'm happy to share and I hope that they change their policy because it really is amazing the improvement. I know my Dr had meetings set up with the insurance company or was trying to set some up to work on changing the policy.
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