Are the moments after waking up when you feel the worst pain?

[ECUrach85]

The suicidal, terrible, paralyzing pain that many speak about happens to me for about an hour after I wake up. Because of this I fight to stay awake during the day avoiding a nap no matter how badly I need them. I'm lucky that the pain goes from a 12 to a 7 most days. But man it'd be nice to wake up to a new day without agony. I ball up, squint my eyes and don't move for about an hour after waking. It keeps me from going back to work and playing rugby. Sure I could wad up earlier but I'd need a nap later. The pain meds make me drowsy. I know I'd be far more independent right now if it wasn't for the pain. Kinda hard to dress and transfer when you feel like battery acid is seeping into your skin

[dejerine]

ECU

You said:

battery acid is seeping into your skin

As you may probably know, there actually is acid being made there. It is fatty acid at the nerve synapses, oxidized linoleic acid metabolites, or OLAM. These are related to arachidonic acid, which is what all the anti oxidant foods and supplements are supposed to be fighting in our bodies. The acids are sometimes called free radicals. Patrick Wall *(editor of the Textbook of Pain and founder of Painonline) said the most common descriptor of dysesthesia is "like acid under my skin".

Once again, you said the magic words for dysesthetic burning. In most, it can also be evoked by occlusive light touch or a blast of cold air from a car air conditioner.


Sounds like your skin is getting hypersensitized from contact with the bedclothing. You are dropping down from evoked burning to spontaneous burning, after an hour or so. I have had some luck at night using satin sheets and extending my lower legs and feet beyond the end of the bed. In winter, I use a stiff cotton quilt that I can tent above my feet and lower legs. I would use silk sheets if I could find them.

[ECUrach85]

Maybe I'm not wording it right. There is no doubt the pain is coming from the inside. I can rub my skin all day and it has no effect. The pain also feels like I'm being stabbed, dragged behind a car, shards of glass. I could go on. But when I say skin I know it's really an internal thing. Does that make sense

But I'd never thought about what you're saying before

[LindaT]

My husband's wakes him during the night. He stays awake later and later to avoid it and ends up sleeping much of the next day.
I rub his skin when he asks, but does not give much relief.
Sorry to hear this evil pain has invaded your life.

[Incoquad103006]

Originally Posted by LindaT

My husband's wakes him during the night. He stays awake later and later to avoid it and ends up sleeping much of the next day.
I rub his skin when he asks, but does not give much relief.
Sorry to hear this evil pain has invaded your life.

So sorry Rachelle I have my worst pain in the morning as well Unfortunately activity makes mine less so I have to just get up and get at it. It all sucks and I have no real solutions for you Sorry

[hlh]

Originally Posted by ECUrach85

Maybe I'm not wording it right. There is no doubt the pain is coming from the inside. I can rub my skin all day and it has no effect. The pain also feels like I'm being stabbed, dragged behind a car, shards of glass. I could go on. But when I say skin I know it's really an internal thing. Does that make sense

But I'd never thought about what you're saying before

What neuropathic pain meds are you taking?

[ChesBay]

Morning has always been toughest time here too. When working FT I did find after pushing through initial wall of pain the distractions and activity usually gave some relief ... getting there was especially tough when tired and stressed.

Wishing you the best.

[ECUrach85]

Thanks everyone. I was on neurontin 900mg 3x a day but decided to see if lessening would make a difference. I'm now on 1500mg in a day and the pain is no different. I want to have a kid so badly so it's kinda like a trial run to get off the meds. They clearly aren't helping anyways

But it's not just morning. If I accidenly dose off for 10 minutes I wake up with crazy pain. Y is that. It feels like I'm the only one with that issue

[LindaT]

Have you tried Lyrica? My husband takes 150 3X a day and does give some relief.
He notices right away if we are late on the dose.

[tooley]

I have very little nerve pain, so I can't relate that well. But my advice is to try to work through it. I don't want to be that guy who just says "cowgirl up" but personally that's what I've had to do in the past.
Dealing with school this past year I wasn't as physically active as I would have liked, also our rugby team lost our mid-week gym time and we were down to one practice a week. Not having time to weight train I was getting really spastic with some of that "battery acid" feeling throughout my forearms and hands and the "ass on fire" feeling was creeping on me because of the time spent immobile. As time went by I wanted to do less and less, it began affecting me psychologically. Finally I began fighting through it, pushing my wheelchair vigorously on my lunch-hour, forcing myself to the gym after school if only for 20-30 minutes. In a short time I began to feel better, the mental state has a big effect. I sometimes realize the feeling in my forearms is still there but I try to ignore it.

Waking in the morning unable to move must have a devastating effect on the psyche. But I would give physical activity a try once out of bed and feeling better. You had mentioned you were struggling on your handcycle, maybe check into a cycle trainer - a "treadmill" for it that you can dial in the resistance. That way you can exercise in the safety of your home at your own pace building up your stamina. I know when I got out of rehab I had little reason to get out of bed, the more I slept the sleepier I was. Now after training alot this spring I find I sleep well but have plenty of energy throughout the day. The forearms still burn, the hands ache when I wake up but I find the more I do the easier it gets.

The other thing that might help is fight to get to your rugby practices, spending time with your rugby buddies even if not doing a whole lot while there. Get a ball in your hands and pass with somebody that has similiar function as yourself. I find the time spent around my peers has a very positive effect because you connect with people that can relate to what you're going through each and every day.

Please no one take this personal, this is the way I have worked through minor pain. But truthfully the more I do the better I feel. I know this is not the case for everyone, and I do feel for you guys.