Saturday, September 4, 2010

BACK DOWN THE RABBIT HOLE







Every time these flares hit, it gets harder and harder
to recover and bounce back.
This last one has been a doozy.

It starts out as a slight ache in my back. Then it moves to my hands and I notice that I have to rub them more than usual.  I started taking Neurontin this week after I told the doctor how difficult it is to put my feet on the ground in the morning. He looked at me and just said: 

"Nerve pain, you need to take Neurontin." 
"Can I take that with all the other medications that I currently take?"
"No problem, it will probably help you sleep."

Okay, I'm in if it will help me sleep. So far, everything that is supposed to help me sleep works only for a couple of days and then it's back to the same old routine. I fall asleep quickly and stay asleep for a couple of hours. Then I'm awake for a couple of hours. Then I fall asleep again. This goes on until around 5ish. Then I fall asleep until 8. I would just like one night where I sleep through the whole night. I know, I know, I'm a hope freak. What we would all give for a night where we don't have pain and can sleep through the night.

Even as I write this I have to stop because the pain in my hands is over the top tonight. My hands, feet and lower back hurt like hell. Now I've got this pain in my neck and it has a buzzing sound. Great. Just Great.  Just one more symptom that has popped up. I also still get a sound in my ears that sounds like static. Why does it seem like the black holes get deeper with each flare? Why does it seem like it's harder to climb out of them? I understand the depression because living every single, solitary day in pain sucks. They say every cloud has a silver lining. It's impossible for me to see that lovely silver lining. Just when I get close, a huge fog bank rolls in. How in the hell are you supposed to find the silver lining through that

Anyway, back to the Neurontin. I tolerate it well and I do fall asleep but with every passing day it works just a little bit less. The only thing I notice is that I feel a little drugged when I wake up in the morning. Gee, maybe I should just stay in bed!  I do get up, though, and go to the gym to walk. I continue to do this because everything I read says that it will help the pain. In my case, the only way it helps the pain is that it makes it worse. A lot worse.  I continue to walk hoping that one day it will help the pain like it's supposed to. I walk very slow and I don't overdo it, but my feet still hurt. I tried the gel insoles. Nope. That doesn't help either.  So, the walking that is supposed to help, makes the pain in my feet and the rest of my body worse. When will it help reduce the pain, can you tell me??  I've got wonderful gym clothes just for the occasion and the cutest little pedometer you've ever seen!  Just don't ask me how many steps I've taken because that would be really embarrassing! 

I know that "the group" has had a miserable summer. Everyone is either in one hell of a flare, just got out of one or just started one. Depression is running rampant because this fricking pain just doesn't stop! I know that this summer has been awful for me. What am I talking about? This whole year has been awful!  Is the rest of my life going to be like this?

I'm watching Titanic and it's almost over. That's how long it's taken me to get through this post. I've had to stop because it just hurts too much to write. Maybe I should have stopped earlier but I'm tired of not posting because of the pain. It hurts too much to write but it hurts too much not to write. I just hope this makes sense. I tried reading it back but I can't even follow my own words. 

I'm tired. 
Not sleepy tired but just thoroughly exhausted.
Bone tired.

Now I need to go check on a couple of people that I haven't heard from in awhile. 
We all keep tabs on each other because it's real easy to go into hiding. 

I've been there once or twice myself.
I can feel it.
I'm going back.
Back down the rabbit hole.


Did any of this make sense???








10 comments:

  1. Rosemary, I can relate..my dr. just started me on neurontin and I started taking it last night, along with my ultracet for pain, ambien for sleep, flexoril for muscles and now the gabapentin (neurontin) for the foot pain..the burning. giving it a try. it's almost too much to take at night, i'll end up forgetting something I'm sure.
    I hope you feel better. I am in an ok spot right now, which means the next flare is even more depressing..Hang in there!

    hugs
    Barb

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  2. The rabbit hole is not deep enough. There is not a hole that goes down, down, down deep enough for where I feel.

    How do we survive this over and over and over and over again? Why do we? I have hit bottom. Am I now suppose to pick myself up, dust myself off and start the climb up and out? Phooey!

    Its just too damn hard sometimes.

    CJ

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  3. My Doctor has me on 2 300mg neurontin in morning and 5 300mg total in the evening 2100mg total. The static in your ear could be caused by Tinnitus. Every person's metabolism is different so you have to experiment a bit to get the right dosage for yourself.

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  4. I'm so sorry you are in so much pain. I tried neurontin in 1996 for months. The only thing that really has worked for the exhaustion is Mirapex.
    My heart goes out to you. I remember the rabbit hole. with love,
    Judy

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  5. Wow. I felt like I could've written this post. My sleeping is exactly the same. Neck pain. Fatigue. I am taking 800 mg of Neurontin 3x/day, have been for a year. Along with morphine sulfate 4x/day. Coumadin. and xanax prn, and most recently ambien...to help sleep...yea right. I may fall asleep faster, but I don't stay asleep. I am in a fog. The pain is not controlled. There is no silver lining I can find just yet...lol. Thanks for sharing. You're such a great writer! xoxo

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  6. Your post makes perfect sense! Chronic pain and chronic depression are the evil twins who love to live together and hate to be apart!

    I found lyrica worked best for my facial nerve pain. Some folks have wiked side effects: mine is/was gaining weight (especially if used in combo with other weight gaining drugs). But, my opiod useage has declined alot (only a bit for breakthrough pain).
    I use 1 mg of a generic xanax to try and sleep through the night. I'm like you, I fall asleep for about an hour or two, then I wake up, fall back asleep for less time usually. Trouble is if I take the xanax-like pill too late, I'm extra groggy-foggy in the morning.

    Thx for sharing your entry in the blog carnival. Walking is my only exercise due to neck issues. It doesn't reduce the pain, but it does get me outside of the house!
    PS: your blog is visually stunning as well as excellently written!

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  7. You help me and I'll help you. Deal? I live your pain and you live mine, how can we change? Thankyou for being there and feeling, knowing, living what I am going through. I know at least I am not alone in this God awful place.
    Maryn

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  8. I can so relate! :( and I think you're pretty brave to be still walking and walking... I tried going to a swim program specifically created for people with fibro and similar conditions and toughed it out for about 6 months before deciding that it was just NOT helping (and yes was making it way worse). my tactic these days is just to keep trying new things every 3-6 months and only keep things that are helping (even a little). anyways, enough advice, back to support and I genuinely hope that you having a better time of it this fall! *gentle hugs*
    Kris

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  9. I've read all these comments and there is a common thread of Neurontin that everyone takes. Did it make you weird when you first started taking it? I can't describe it....squirrely.........like I'm jumping out of my skin???? Thanks for all the good thoughts and prayers. Believe me, you're all in mine!

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