Recently my nerves at s3, s4, s5, co1 dermatoms are playing havoc. Feels like I've got a new body every day. Pain, then relief, and pain, and burning, a foreign body object feeling, ect
I wonder did anyone, especially with CES-I, experienced a lot of changes day after day ? I also wonder how did you feel while improving? Like, for example,if burning is getting worse, could there still be healing afterwards?
If anyone had improvement in sensation and movement at specific dermatoms could you please share how it felt few months prior to sensitivity and function return.
After my injury, for several days or (maybe weeks), I had no burning. But doctors gave me gabapentin and baclofen. Soon, I had burning in my “feet”. The next day (or so), the burning had moved up my leg to my calf. And I, of course, continued taking the gabapentine and baclofen. Then the burning moved up to my thighs. Finally, the burning moved allhe way up to my genital area and hips. All along, I’d told personnel about the burning I was beginning to have,... for all the good THAT did me. Not having been through this before, I had no idea what drugs I was being given or their purpose. For those who would say, “Why didn’t you ask?”,... I say, “Have you even tried to ask a question in a hospital”? It’s almost as though they gave me the oxycodone in preparation for the doctor’s visit. And, the “doctor” gave no indication of who she was when she stuck her head in with her assistant half-hidden behind her in the doorway. In my opinion, the drugs caused me nerve damage, and that damage isn’t reversible.
Thank you, Vintage, for sharing. How is your burning now? Does it change with time? I do not think my medicine did any harm, as I almost took nothing, lol. The only thing I can tolerate is valium, and tramadol. The only day I was pain free this whole year was when I was given fentanyl (lucky post op days at the hospital). All other stuff messes up with my cognitive function or courses other severe side affects.
So I still wonder if anyone experienced improvement in pain and burning and sensation with time?
I always have burning, however the burning will sometimes feel quite miserable, but other times is below a certain threshold, so that I’m able to mostly ignore it. When I was on oxycodone, I couldn’t learn anything new. After I was off of oxycodone for about three months, I began to be able to retain what I was studying. I’d had the illusion that I would be able to finish my Masters in Modern languages. But while on oxycodone, that was never going to happen. I was studying French, but while on pain killers, it was futile. Just to follow up on the Masters comment,... I will not be able to finish it now, not because of my brain, but because of the cost.
Recently my nerves at s3, s4, s5, co1 dermatoms are playing havoc. Feels like I've got a new body every day. Pain, then relief, and pain, and burning, a foreign body object feeling, ect
I wonder did anyone, especially with CES-I, experienced a lot of changes day after day ? I also wonder how did you feel while improving? Like, for example,if burning is getting worse, could there still be healing afterwards?
If anyone had improvement in sensation and movement at specific dermatoms could you please share how it felt few months prior to sensitivity and function return.
Thank you for any feedback.
I'm a C5/6 quad who initially had no movement. About 5 weeks after accident, I got my first bit of movement back (my toe moved minutely).... it was not long after that that I started experiencing agonising burning pain (as well as nerve pain) which was worse at night (couldn't sleep because of it)...movement was only slight, could twitch a thumb....around the 10 week mark, could move my knee slightly only in a certain position. The burning pain which was initially unbearable eased fractionally after a couple of weeks....and then eventually went completely.
Looking back on my recovery, I think the burning sensation was linked to messages getting back through the injured site in my neck, they were probably mixed up in what type of messages were being sent. I'm now one of the lucky few who doesn't suffer from burning or nerve pain, I have other pain but I know thats linked to my poor walking gait so I have to live with that.
I kept recovering even after the burning pain abated and it took me 18months to walk again without aides. 22 years on... I now use a rollator when I go out but don't need it indoors
There are many on this facebook SCI walkers page www.facebook.com/groups/1311153908905293/about/ who suffered (and still do) from burning, there are also many CES on there....I'm sure they could help you with your questions
Oh.... I always had sensation which has remained stable...I would rate my sensation at around 95% from shoulders down
Thank you, Terabev, for sharing. I had unbearable pain and burning and itching in my buttocks before sensation was coming back. I have it now in other parts. But can't even understand if there's improvement or not Some days are better, others worse.
Vintage, sorry to hear you had to drop your masters in French due to the cost. It's interesting that you feel about meds very similar to the way I feel. Drugs helped me not to die from pain but they were killing my intellect completely. That's why I just use ice for burning. And carry tramadol everywhere, but try my best not to take it.
I take kratom for pain. On languages, my BA was in Spanish. The Masters in Modern Languages required only four semesters of French, plus some linguistics, and lots and lots more Spanish,... including Spanish poetry, and Medieval writings. I tried to get them to let me use Portuguese as my second language, because I’d done two semesters of that already, but they wouldn’t. Then I tried to get them to let me do German, because I studied that at a private institute, and could sorta’ speak it, but the German teacher retired that year. So, French it was. I’d done two semesters of French in Community College. After my accident, with my brain disabled by oxycodone, I tried to prepare for a condensed summer French course that covered two semesters of French in only six weeks. I felt like Superman in the presence of Kryptonite,... as though my brain were “disabled”. I couldn’t retain anything that I studied. Oxycodone was like a “brain paralyzer”. I got off of it as much as possible and replaced it with kratom. Then slowly, over months, my ability to learn returned. It wasn’t a Masters in French.