crpssurvival

#ComplexRegionalPainSyndrome

Please help. This is the first post I've posted. But I need some support. My spinal cord stimulator, which has been so wonderful for me in terms of pain control from this monster, has decided to stop connecting to the devices that turn it on or off or charge it. I turned it off to charge it yesterday and I haven't been able to turn it back on. This stimulator has been so successful for my pain relief that I've gone off of most of my painkillers. So I don't have any rescue meds per se. Does anyone have any tips?
#crpssurvival

Hello Everyone!

I hope all of you are having soft, gentle, warm, and comforting days.
I want to share with everyone my experiences with Neridronic Acid Infusions for my 10 year long battle with CRPS.
To make a long story short, my body went from healthy to incapacitated. I could no longer even sit up or prop myself up in bed. My systems were shutting down. It started to progress rapidly and my physical decline took a drastic turn for the worse.
With no money and a pile of overdue bills, we were able to go to Italy for life-saving treatment. Our friends and family held fundraiser events, created a site for others who wanted to donate, they gave us funds, and lent us money.
I had the 4 infusions and came home (to Pennsylvania). It took a few months because I was so far gone. But it began to work. Now, a year and a half later, I can walk, stand for short periods, drive short distances again, and even go out to eat! This saved my life.
I was at The Dark Place beforehand, as I saw my ability to “take matters into my own hands” escaping. So I was all set up in the event that my mobility was on the verge of disappearing.
I just want you to know, that no matter where you are, no matter how badly you feel, please know, there IS HOPE. I know not everyone can get the funds to go to Italy. (If you can, I hope you go get the treatment). But this treatment is being tested in the US now. I do not know how long it will take. But there are patient trials happening all over the US. These Phase III Clinical Trials are the last step to FDA approval for the treatment of CRPS.
I just want to give you hope if you are in The Dark Place, or in a rough way having a tough day. I truly believe this is the cure. I believe we will all be healed if this wretched thing and each of us will have one heck of a story to tell, to inspire others.
Please don’t lose hope.
Soft hugs to all my fellow CRPS Warriors. ❤️
And thank you for reading this.

~Sylvia
#crpssurvival

#crpssurvival
Hi guys!
has anyone else been far progressed into CRPS ? I mean, to the point that you could tolerate no outside stimulation of any sort ? no ceiling fan. No television. no music playing softly in the background. No human touch.
I experienced this through about three years before getting the treatment that worked. (I went to Italy to get Neridronic Acid infusions).
has anyone else been this far progressed?
what I did was hum softly to myself. somehow, the gentle vibration of humming helped.
anyone else?
thank you for reading this. ❤️

Working hard on forward thinking, leaving past in rearview mirror. Making sure me is the item in focus.
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