I'm sorry to hear that @creativesoul! I know what you are going through as I have CRPS as well. I did the neural stimulator trial but haven't gotten the permanent one due to finances but, hopefully, I will be able to get the procedure done soon. The medications are taking a toll but it is what it is! Thoughts and Prayers to you!! Resteemed ❤
I didn't know there was anyone else here with CRPS! It's been so long since I talked to someone else with it. I couldn't handle the idea of the neural stimulator when it was first offered to me because all of the extra pain and maintenance. I also wanted to live my life as naturally as possible...so I kinda burned that bridge. You are so brave to be willing to go through with the full procedure. I sometimes think that if I had a better team of doctors and a support system I might have been brave too. Now that things have become so brutally bad...I will always wonder what it might have done for me. Before reopening the channels needed to get the stimulator procedure done this time around...I have been wanting to try the Quell. Based on my research it works in the same way and has the potential to have a very similar...if not the same result. What is your opinion on retail grade versus medical grade equipment? I would like to think it's possible to avoid the expense and still get good results with a less invasive product.
The trial was hard but it did help. I had wires sticking out of my back for a week and wouldn't you know it that the wires knicked my spinal column and I got a cfs leak which gave me a horrendous headache the whole time. They said it could happen and they had to go though scar tissue from a previous surgery so it was what it was.That is my luck..lol! It did finally heal without having to get a blood patch but I sure leaked a lot of fluid. I couldn't go into more debt so had to postpone the permanent procedure. I just try to look at it as sometimes things happen or don't happen for a reason even though we may not know what it is right away or ever. I've had stomach issues for years but not as bad as what you are going through right now. Not being able to walk much or stand very long is depressing. I tried one of the tens unit's but I forget which one. I didn't help much. My doctor recommended me right away for the stimulator. The rolling muscle spasms are the worst. Waking up screaming in pain but I'm lucky my husband has been really good about everything and helps with many things I can no longer do. I think trying the Quell is a great idea. I heard it is pretty good but have not tried it myself.
You sound like me with surgeries and medical procedures...if something can go wrong it usually does! Some of us are just really unlucky that way. The lumbar nerve block gave me a wicked migraine...and at the same time I was doing the ketamine and lidocaine infusions. The pain and the hallucinations are not fond memories...haha. I too believe that everything happens for a reason...and also when they don't. Knowing why we are being forced to go through so much hardship would certainty help emotionally and spiritually. Tens units are for localized pain and basically just zap your muscles...I like the idea behind the Quell because even though it's based on the tens...it's also so much more. The device works from your calf...but the potential benefits are full body. It's also supposed to feel like almost nothing so that you can sleep with it at night. I am sorry to hear that you wake up screaming in pain...but it's good that you have a supportive husband! <3
Thank you @creativesoul! My doctor advised against the shots in the back but cautioned me that the insurance might require it. They didn't which was a nice surprise but probably from all the previous testing I had done before being diagnosed by a new doctor. I may look into the Quell if I haven't screwed up my surgery by postponing. The money scared the heck out of me after taking on debt from the trial and then my husband being out of work for eight months due to an accident. I try not to think about it too much. The infusions sound intense. I've been having problems lately with brain issues like remembering or should say forgetting things and other stuff but question if some of it is from the medicines I'm taking. I do wonder how much heredity may play into it as other family members have similar complaints as does my daughter. She is in her mid twenties and was going to talk to her doctor about it.
I wanted to send you this link on discord but your username does not come up. You probably already know about most of it...but it does explain the connection between the sympathetic nervous system and the limbic system quite well...
https://rsdguide.com/symptoms-crps/crps-memory-loss/
As for family members with chronic pain...brain fog is a common enough symptom. It could also be diet or medications.Cognitive difficulties are the worst because it feels like you are losing your grip on reality...and losing that control is very upsetting. <3
Thanks @creativesoul! There is a lot of contradicting info but that is a good website. I may have already read it but will re-read. You will laugh at this one..the other day I uploaded a lot of photos from my phone and then found I had already done it the day before..gotta laugh! My family have noticed that it has gotten a lot worse lately but could be partially from meds or at least it makes me feel better to blame them. I'm on steemusa and the alliance discord. I thought I was on another one also but forget which it was.
I normally don't push links on anyone...or recommend googling CRPS because of all that contradictory information. At best it should be worth a skim read and a few nuggets of wisdom. I have done that too with photos...lol. The desktop on my computer is a mess with folders within folders of the same stuff. Trying to reorganize them only makes it worse...haha. I will find a link to one of those servers and say hi.
I read a lot after the diagnosis but usually wind up going back and re-reading alot of stuff anyway..lol. I just read your new post and awesome! That is one of those things that wind up to work out even better for you! I hope the Quell works out great! You have me thinking about giving it a try if I can't get my surgery soon. ;)