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Hi Sean, so sorry to hear about your PLS diagnosis and pain. I agree with LouLou that you'll find tons of help here - there are many wonderful folks participating on this forum.

I'm still working - I now teach full-time - but I do so on-line - and completely from home. If I had to go to an office, stand for 8 hours, or anything more restrictive, I'd be in some pretty serious trouble.

I have a lot of bilateral leg pain - mostly calf and feet - but often upper legs as well. Consistent with what others have said, neither is my pain possible to describe. In fact, on another post, I mentioned that I was very recently referred to another neuro who asked me to describe my leg pain. I told him I could not do so - his heavily clip and sarcastic response to me was: "But you are the only one who CAN describe your pain!" His sarcasm really put me off - I have not gone back. Not a huge loss either, because he was simply too arrogant to understand what I was saying. In contrast, my present neuro (who - surprisingly - had referred me) has recognized how odd this disease really is - I once told him that my symptoms were "strange" - his amused response was: "But EVERYTHING about your condition is strange!"

The problem is that the pain is sometimes a very severe tightness sprinkled with pain - which moves about - and which varies in frequency....uh, forget it, because I just can't describe it. Nope, can't describe it. :?

Wish you well!

Mike
 
..uh forget it...............is actually a good description.........mike......bt only those who experience it know that...so not much help there.....but i liked it.........a flickering light bulb, was my favourite....whats yours gang........johnny.......
 
its monday morn here in blighty.by 35 mins...the weekends done finito....u all av been avin a good time with the family and friends and to busy to post..thats good news....am constipated, well am not really but if a was it would be good news.....cos wen i finally go...the joy will be 10 fold, would it not....and thats life init...no up without a down. cant have a plus with no minus...no summer without winter...am back from the pub and talking crap, again.....so am off to bye byes. and use guys sleep well too......johnny soft lad..
 
Spinal problems can cause so many different kinds of pain, it gets hard to know where to start! Carecure has a whole forum just labeled "pain". Spasticity pain, nerve pain, phantom pain, muscle overuse, contracted tendons, torn apart joints... *whistles* And if you describe it too elaborately or with too much analogy, it's a marker for psychosomatic disease. Who can win?

My particular brand of UMN disease is mitochondrial in nature, and causes muscle breakdown as well as UMN death. For me, that meant that many years before I had neurological symptoms in my wrists, I couldn't write more than two paragraphs before I had to switch hands. Similarly, pain stopped me from chewing things like steak more than a decade before actual weakness showed up there. So for those of you who haven't ever been tested for SPG7, that's a factor. As far as I know there isn't much they can do, you just have to work your lifestyle around it.

Perhaps the most important thing to know about pain is that it will shorten your life all by itself. A really great general practitioner who was a close friend of mine early on when I was in limbo land sat me down one day. He explained that although it wasn't diagnosable, although he wasn't even sure medical science had a name for it yet, he believed that I had a degenerative neuro disease. But on the whole, that didn't worry him so much. With the amount of pain I was trucking around with, he said the stress the pain puts on the body would get me before the neuro disease had a chance. He then yelled at me (again) for some of the really idiotic things my high pain tolerance had allowed me to do. Other docs have backed him up over the years, and my neuro helped me wean down my pain tolerance.

My biggest and most surprising pain killer was wheelchair use, and if I'd known what a difference it would make I would have stopped walking so much sooner. I've worn through opiates and anything lighter, but Tramadol still takes the edge off and I use it for break through pain. Less pain = more life in every sense of the word, so whatever you have to do to make it reasonable is usually worth it. Lifestyle modification is hugely helpful, but often socially awkward. Most of the time I make it over the social barrier and do whatever I can to get the most out of my time here.
 
beky,we are so alike its scarey.........i can 100%relate to you and totally agree with your post.
 
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