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

[David Berg]

Originally Posted by 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

So your max was 2700mg/day. A lot of people have had to go higher for it to help with the neuropathic pain. Or perhaps do as Linda suggested and try Lyrica. I just wouldn't totally write off Neurontin unless you've tried (and can tolerate) a higher dose. Keep in mind that the side-effects are usually the worst in the first few weeks, then moderate, at least from the descriptions I've heard from other people using the med.

The descriptions you give of the pain are right in line with what I've heard a number of times from other people with central pain, so know that you're not alone. I compiled a list of the descriptions I received from several people, but the "battery acid" burning sensation is one I've heard a number of times over the years.
http://painonline.org/description.htm

[chick]

Originally Posted by 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

Given that the pain is in the mornings and after you wake from naps, I'm wondering if the pain may be associated with being still and remaining in certain positions for periods of time, which may be adding to body stiffness, muscle tightness, pain from persistent pressure on certain areas, etc.

As you start weaning off your meds (which you should definitely do in consult with your doc), I think it wouldn't hurt to incorporate a daily regimen of stretching and exercises that might help relax your body and get your circulation going in the morning, in addition to any routine ROM you might already be doing. You can start this off in bed, before getting dressed, so you won't be in pain as much (hopefully!), and then complete it while in your chair.

If you can get off the meds, that would be great, especially if you don't feel they work for you. If the pain persists, you can always try other meds to see if they might help, but I think it's good to seek non-medicated remedies as well, including simple things like increasing movement and exercise, as they've definitely shown to minimize pain. But whatever you do, be careful not to just increase meds and doses higher and higher hoping to relieve pain. That can get dangerous, so be mindful. It's just something you'll have to work through to see what works best for you.

[sjean423]

I actually set my alarm for an hour before I need to get up, and take pain meds then, turn and go back to sleep for an hour. Sometimes that helps. For me, moving around, getting dressed and in the chair generally makes is a lot worse for a while, then it gets better. Kind of goes w/ Chick's thought that it is being still for too long that sets me off. But it really slows me down in the morning. (To the point, that if I have to be bright and alert first thing in the am .... I am tempted just to not go to bed, lol).

[darkeyed_daisy]

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

It makes perfect sense.

All last summer, I could lay in bed with a comforter on top and count the revolutions of the ceiling fan as it burned its way through my legs. Some mornings I would wake up in the fetal position. Some nights I would just stay up all night long and wouldn't sleep at all. I was told it was in my head. You see I walk with AFO's and a cane. I have forward movement in my knees. I was told many times that "I didn't know pain" This kind of pain is maddening. Your descriptions are spot on.

You had storms down your way the last few nights? Barometric pressure changes always make these feelings more intense.

You need to read more posts by Dejerine and find a good pain doctor if you don't already have one. The verdict is still out on mine at Chapel Hill. Duke University is supposedly ranked one of top for chronic pain treatment and studies not spinal cord injuries. I am thinking of making the switch. I have no other advice other than I truly feel and understand although I don't feel YOUR pain. I have central pain syndrome too. I hope you find relief because it will take over your life if you let it.

I can also tell you that mine has been helped with exercise but it is hindered by anxiety from the pain. Its all connected. You need to find some good caring doctors Rachel who can help you through this.

[t8burst]

Mornings/naps are the worst for me as well. It gets into a viscous cycle, your mind is trained to avoid things that hurt (put hand on stove, stove hot, don't put hand on stove). So when sleeping hurts I think it is natural to start to avoid sleeping. I know I do. I wish I had an answer, and if you find one please share, but you aren't the only one. I put my my pain meds on my bedstand before I go to sleep with a bottle of water. When I wake up, I take them, then try and do some gentle streching/ROM for a half hour till they kick in enough for me to function.

[dejerine]

ECU

Central pain dysesthesia may manifest as either:
1) Spontaneous burning
2) Evoked burning

Most CP patients have both. I believe you may be describing spontaneous burning since rubbing does not evoke it. The most common evoking stimuli of dysesthetic burning is light touch or temperature change (especially cold). I know of one person where wetness also evoked the pain. In all cases it is SUBTLE changes which do the most evoking. Heavy pressure has no effect on me at all. I can push on the skin all I like and NOTHING. However, if I lay a newspaper on my legs or if there is a cool breeze moving across my legs, then it really gets intense. That is the paradox. It is the lighter effects on superficial sensibility which cause the really terrible pain.

Is there anything which evokes, or makes worse, your spontaneous burning beside sleeping? In your case it might be a contest between whether it is slight temperature change when you are sleeping or whether it is light contact from the sheets. Any of the superficial sensibilities can be an evoker. Superficial sensibility means temperature perception, light touch, barometic changes which go unnoticed in the general population etc.

The pain is almost always an internal thing because central pain patients typically lose in their minds the connection with skin surface, (atopoesthesia) so the pain is nearly always beneath where the skin "ought" to be. It is therefore internal.

[arndog]

ECU -
Here is another opinion and plan of action.
1. The meds are wearing off, period. Set your alarm 1 hour or 45 minutes before you usually wake up. Roll over, do not think and take a gabapentin and a little oxycodone( 5mg or less) or whatever pain med you happen to take, and shut the light and go back to sleep. Wake up in an hour. Avoid that demoralizing feeling of feeling like sh%t to start the day. You are a TV star, you deserve better... !

[ECUrach85]

Thanks Arndog!!! I actually already do this. I take meds around 8:30 every morning and sleep in until at least 10. It's weird, the first 2 seconds after waking it doesn't hurt then it hits me like 1000 bees attacking me. Naps are the worse. You know when you nod off and don't realize it? Well sometimes I do that and swear I didn't fall asleep but 2 seconds later the pain attacks me. I'm never woken by the pain so maybe I don't hurt while I'm sleeping. It's the act of waking that hurts.

[dejerine]

ECU

Sorry to keep bugging you but I am very interested in this.

Your "1000 bees" is what is termed "lancinating pain" There isn't much of it around now, but in the older days, I used to hear men with tertiary syphilis describe the same thing, but of course then I had no idea what they were talking about. It is called "Lightning pain" in the dermatologic literature, but it is similar except lightning pain follows one course through the body or in a limb; whereas the lancinating pain of central pain can also feel like thousands of bites, so it is called "lancinating pain". Bettie Lou Hamilton, one of Kevorkian's "patients' said it felt like thousands of ice picks.

I tried to use TENS on my neck, thinking the musculoskeletal pain of three spine surgeries might get better, but it induced for the first time, lightning pain on the face, so I stopped. I later saw this described in the medical literature from a rehab center. They also reported a person who had stopped having lancinating pain in whom using tens reactivated it.

My question is:

Is there anything that incites or evokes any of your pains by way of stimulus, or is it simply waking up that does it. In my early days, if I stepped into a shower, I also had the 1000 wasps feeling. I have found medication (also the passage of time) to help lancinating pain, but it is the ONLY one of the central pains to respond in me. The burning dysesthesia (the battery acid you mentioned) is dulled slightly by clonazepam, but not by any other medication, including opiates.

Read your story at your site. You have a great outlook and attitude.

Thanks for your time.

[bollefen]

yes right up til the next hoour when I realize it is going to get worse all day :-(

ket