CRPSWARRIORS

I recently read a article on here an experiment to explain how it feels with depression. I thought it was really insightful,this made me think about it. I came up with the following. In our galaxy there are billions of stars. I am just one of those, we generally have the same characteristics. We are all alone in a cold,dark place void of life. My star has one little wobble and my orbit changes. This wobble seemed harmless but it ended up pulling me into the gravity of a black holes. I'm slowly ripped apart having all of my energy stolen and finally I circle the black hole until I cross the event horizon. The place where nothing comes back from, the point of no return. Not even light can escape for eternity, lost. This is how my 20 years of dealing with CRPS, MDD and GAD has made me feel. #CRPSWARRIORS
#Depression
#Anxiety

This is my first post. I wanted to write a little bit about what it is like living with Complex Regional Pain Syndrome and some of the other things I face in my every day life. In 2010 I had a spinal injury along with one of many TBIs. At this time I was told on top of my fibromyalgia diagnosis that I had the beginnings of arthritis as well. At 27 they told me I wouldn’t be walking by the time I was 40. I turned 37 in March and most of what they and past Drs and therapists said would happen is happening. If you don’t know, CRPS is an incurable, but not untreatable neurological pain disorder which when exacerbated by other physical trauma to the spine head or nervous system, can be completely debilitating . This weekend has been a really difficult one. I’m not sure why but the couple of errands I did and MRI on Tuesday left me feeling awful. I also have a non epileptic seizure disorder, pain being one of my main triggers. I had a week of cluster headaches and seizures. When I have one seizure, there are usually a string of them. I stay in bed until I think maybe they are over. If I haven’t relieved myself during the seizures that’s my first goal once I can move. If I don’t do it now it could be hours before I can get up again. When I have back to back days with #Seizures my body feels like it’s grinding to a halt. The CRPS and seizure disorder play a little game triggering each other and by now as you may have suspected I am doubled over in pain in my bed and the only reason I can write now is because the pain that sets into my arms is still at a dull roar.
I’m thinking about my mom on this Mother’s Day, and the last time I saw her. It was the first time she’s seen me in a wheelchair. I could see something there that she wouldn’t say. That thing that a parent feels when their child is going through something they can barely explain. Most days by noon I’m on fire. My legs don’t want to move or hold me up. I use a can or walker while I’m at home. When it’s the worst and I need my wheelchair. I still have to take the few feet of steps to get to my bedroom door, because my wheelchair once in my room, cannot move out of this space because it is a small home. I live in a two bedroom condo on the third floor. On my good days I can walk down the stairs but any more than that I need my chair lately. I have another MRI this week that my pain Dr ordered. Thankfully he is going to spare me the excess pain that steroid injections and a spinal chord stimulator caused before.
Do to lockdown during this COVID pandemic I can’t do any of my regular schedule, no physical therapy, no physiotherapy, no body work at all. I can pay $150 out of pocket for acupuncture which is a really expensive bandaid. I don’t make enough with my assistance to receive the newest treatment for CRPS which is an infusion process with ketamine and other drugs and supplements. I have read amazing stories about this treatment. Maybe one day. Now I’m going to go try to mellow the flames.

Basics!!!
Regular quilt - too heavy.
Soft throw - feels choking and not cozy enough for sleeping.
Sheet - grates on my nerves (pun intended).
Seams - ARGH!!!
I'm not even talking about how to reduce pain or insomnia so I can actually sleep. I just want to know what's best as far as blanket and sheet... #CRPSWarrior #ComplexRegionalPainSyndrome #Fibromyalgia #LionnessofGod

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