Pain so bad

[betheny]

It's got to be the weather, right? I can't grip a steering wheel right now. Can't sleep, can't stand to be awake. I only get comfy in a tub of hot water, and I know I'm blessed to have that option. Toes and fingers are cramping and twitching with the pain. Fingers hurt so bad it's going up my arms, into my elbows, which feel like they've been skinned! I can barely push my manual chair because of the finger pain. Butt pain is incredible. Just did hip exercises so maybe I'll get some relief there.

We've been raising and dropping temps 20 degrees every day, constant t-storms, lots of tornado watches. IOW, the barometer has been all over the map.

This afternoon, in desperation, I took a half a Xanax + my pain meds. The Xanax did seem to relieve some of the cramping in my fingers and toes. Of course, I was also unconscious.

I just had to vent. My toes are cramping again, which means they'll start twitching in a minute.

Besides the tub, my warm bed helps. This ain't much of a life right now. I've got things to do and they aren't getting done. I need to do some u2fp work and my home is reaching the level of unspeakable. It needs cleaned.

This may be the wrong forum but I hope somebody has some ideas.

Also, dies anyone else have chronic pressure sores due to a tailbone they mangled as a kid? I refused to tell my mom when I broke it, just white-knuckled it b/c I wouldn't let a doctor see my butt at age 13. I'm sure regretting that decision.

I sure am lucky I can do yoga stretches on my hips. At least that is one guaranteed form of relief.

[dejerine]

betheny,

I am sorry to hear your pain is so bad. Over the years I have enjoyed your posts (every one) and you show such a strong spirit. You are like the girl in "Million Dollar Baby" although you are living and she did not.

It sounds like thermal stimulus is a big part of your pain. Cold stimulus, that is. I have found a cotton quilt, shaped like a cocoon, close to my skin, creates a zone of warmth which is superior to sheets. And the quilt is stiff enough to hold its shape,, so it doesn't even have to touch my skin, which really helps. I got it at TJ Maxx.

I don't have med recommendations, since I am sure you are smart enough to have tried everything already. Also your drowsiness suggests you may be near maximum levels anyway.

Rigid control of the temperature in my room makes a difference for me. Like classic central pain, your nerve injury pain is worst distally (centripetally) and less severe as you go toward the cord/brain. I am guessing you also have normal pain which sensitizes your pain system and makes the CP worse. Anything you could do for the obvious causes of normal pain (not nerve injury pain) such as bedsores, etc. should be helpful. The whole secret of surviving CP for me is avoiding the things which sensitize my nervous system. This starts with avoiding stress and ends with temperature control.

Thanks for the humor.

[1 Fine Spine RN]

Beth,

I know one thing, even with no SCI and just peripheral nerve junk, I need my bedroom to be a consistent 73 to minimize my similar issues. If I don't life is hell. I think my body is too dumb to know its cold. I wonder if menopause/thyroid contributes...has to....sorry honey...feel better. Mary

[woman from Europe]

I feel bad for you, that kind of pain is terrible. I hope you are sleeping now and when you wake up you feel better. Sleep has been my main relief all the time but I have been without that kind of pain for years now because my meds are working. Or maybe it diseppeared over the years.

And before, muscle relaxers is the med who has been working best.
Unfortunate, you cannot change the weather, but you can lower your stress level. I don't think I can help, only express my sympathy.

[arndog]

Originally Posted by betheny

This afternoon, in desperation, I took a half a Xanax + my pain meds. The Xanax did seem to relieve some of the cramping in my fingers and toes. Of course, I was also unconscious.

Bethany - sorry about your flare up. May I ask what your pain meds are?

Oh, if you could send some of those thunderstorm/rain clouds out to Reno, NV, I would be grateful.
jon

[Eileen]

Oh Betheny, sorry it is so bad right now. Hey, if you need to stay in a warm tub or under warm blankets till this passes go for it. Heaven knows no one will ever confuse you with a wimp. You are such a strong person, and admired. Sometimes I feel like I am suggesting the entire world pop an Ativan, but I know it helps me relax. While lableled for anxiety, the plain fact is that it helps relax muscles, so if cramping is a problem it might me a nice adjunct to what you are taking.
The temps here are fluctuating wildly too. A thirty degree difference in 24 hours the other day. My body has no clue, but my pains to go up, especially in dampness.
Sending you "feel better" thoughts.

[madmaddmother]

Betheny, my son is feeling the same pain...it's gotta be the weather...nothing I do seems to help...this morning he didn't even want to be touched anywhere on his body...we changed his pain patch this morning and we were thinking it was because it was his 3rd day and the patch seems to quit helping him on day 2...it's noon almost and he finally went back to sleep and I think I'll just let him sleep...
I hope you get relief soon...and lets hope this rain and thunder leaves and we all can bask in the sun! hugs, judy

[betheny]

Thanks for the support, everybody. I woke up this a.m. and thought "Oh, hell, I broke my own rule-Don't drug and post!" So it was a relief to check and see that I was understood.

Arndog, they give me oxycodone in various forms right now. Used to be percocet but they are backing off the tylenol, thank goodness. The narcotics are their own little version of hell but I've tried all the off-label anti-seizure meds ever invented, and have no luck with any of them. If there is a bizarre side effect, I'll get it. Lyrica gave me double vision, another one made me crap the bed (I forget what it was called. Should have been called Ex-Lax!) Neurontin was good for the burning, but eventually the burning gave way to this hammered-bone feeling.

Seems like today will be more of the same. Thanks for the ideas, everybody. I'll just plan on staying home and not driving today, I guess. There is no law against dusting while impaired on pain meds...and God knows I've got dusting to do!

Dejerine, somehow I didn't know that when the pain is the furthest from the injury, that is classic CP. That has been my problem since Day 1 of SCI. I remember laying in bed and crying because my hands hurt so bad, in rehab. Getting a 5 mg vicoden in rehab was like pulling teeth, back then. And I was a rehab fiend, I really WANTED to work through that pain. Now I hear people come out of that same rehab on all kinds of pain meds, so much that they can't maximize their rehab time. The pendulum swung on that issue, apparently.

I can't imagine what they were thinking with that belief that a new incomplete SCI didn't hurt. It sucks that an old incomplete SCI also hurts.

Stupid pain. I swear I'd shut up about being disabled if it weren't for the pain. I can handle the wheelchair, I can tolerate the graves disease, but 9 years of pain is taking a toll. I was off all pain meds for years, but then I got graves disease, which feeds on stress. Pain is a huge stressor and it took me a long time to accept that the graves was going to kill me if I didn't address the pain.

[grahama]

different ideas-
mindfulness for chronic pain management is increasing in awareness for many. just don't focus on painful area if using body scan!
some finger pain has been improved by taping and use of film dressings- speak with good hand therapist.
recent interest in knitting for chronic pain- stitchlinks website!
all different from usual recommendations but none that will interfere with your current medication and might help
good luck

[bollefen]

Sorry you're having a rough run. I'm an ambulatory cauda equina and the pain is the pits. I tell people embrace your pain but unfortunatley fir SCI's the length of time, 5 year for me, precludes this.

What ever it takes. And really, give yourself a break. Take the loooong bath, i'd bet my last buck no one will break in and clean for you!

kindly,

bill