Pain question

[Raven]

I am a bit confused or should I say don't understand the pain I am going through. I have been SCI'ed for 50 years and I only had a bit of pain after my injury for a a couple of years. It consisted of a burning sensation in my legs which would go away with my massaging them. Then it rarely bothered me and when it did, it was not that intolerable. In April of this year, I was hit by a strong pain like when you pull or twist a muscle in your back. It got worse as time passed. I thought I might have twisted or pulled something in my back but the pain changed around a month after it started. I began tp feel a stabbing pain in my kidney area.in my back. The previous pain would not change totally. It would hit if I moved, so I avoided moving as much as I could. Around a month later, I had to go to ER because the pain become a 10 and making me cry like a baby. From that time on, the pain has not left me in peace. I have gone to ER several times, been hospitalized in the pain area, had several CT Scans, MRIs, X-Rays, Blood tests, Lung tests, and seen many different specialists. They, most of the time, don't agree with each other as to what is wrong. I was introduced to so many pain meds and the feelings of drowsiness you get with them. It was scary for me at first. Now, these feelings are more familiar and less frightening. Nonetheless the pain remains.

I don't know why it hit me after all this time, what is really causing it, and why it is only affecting my top left area. My right side is just as it wa at the beginning of my accident. I have lost the sensation in my left side while my right is normal. Whenever I touch or scratch my left side, it feels as if I am scratching over it with covers on it. Numb. My right side doesn't feel like that. Everything in my left top has changed. I can't understand why this is happening only on one side nor why until 50 yrs later. Also, hope it doesn't ever affect my right side later on.

I am wondering if anyone else has gone through something like this or how, where and when their pain did/has begun. Is there someone who can answer or possibly give me an idea on mine? I would surely like to understand it all better.

Raven

[arndog]

Hello Raven,
What a story to read. I am so sorry. I had pain right away after my SCI which was 8 years ago, so I am not in your shoes. But have a few ideas.
Could you tell us what specialists you are seeing?
First, you have to rule out something structural in your spine, sounds like you have done this with your MRIs, and CT scans and there is nothing that points to the painful area as a cause. Is this right? That would be concluded by a spine specialist like a Spine Ortho or Spine Neuro doctor.
The next specialist I would see is a Physical Medicine doc, who specializes in spinal cord injuries. In my case, I would have to go out of town. I would schedule an appointment at Craig Hospital in Denver where I did my rehab. The Physiatrists there are thoughtful and have good communication with the other specialists. They call that a "reevaluation" ( it takes 3 days and is not cheap). I don't know if you could do something like that.
Your story sort of sounds like a post-herpetic neuralgia from Shingles. I am sure that has been considered. Maybe you had Shingles without a rash and then ended up with the post-herpetic neuralgia. Was this considered? I don't believe in diagnosis through the internet though.
Well, those are some thoughts....
arndog

[Eileen]

Hi Raven,
So sorry to hear about your awful pain levels. I didn't have that much pain after my injury either, with the exception of the bottom of my feet, which felt like someone was holding a match on them. That eventually went away in what I always assumed was some sort of nerve die-off. All the pain that I have now is from easily explainable overuse......shoulder tendonitis with calcification, ulnar nerve issues, and carpal tunnel, to say nothing of a back that has been sitting (until just recently) on those awful sling back standard upholstery, which gave me a good case of kyphosis. Your pain really sounds like you do need a total check up. I don't know where you are located, but is there a SCI center near you who could do a total work up?