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Two days now with only half my gabapentin…

February 10, 2012

…and this is like being tortured. It’s hard to describe the pain. First it’s only in part of my body – the left half. It is most pronounced in my hand and in my foot, and then it spreads up each limb. It’s in my left foot, most horribly. The bottom of my foot, especially the undersides of the toes. feel as if they are being electrically burned. It’s a tingling, cold, electrical acidic feeling, as if my toes and foot had been dipped into some kind of lye or vitriol. Yet there is also a sensation of being crushed, as if the foot – and my left hand as well – were sandwiched between two large slabs of granite or limestone, some extremely dense and heavy rock, that was at a temperature in the low 20s.

It makes me realize how much my drugs do for me, to make my life bearable. Why am I in this condition right now? Well, it turned out that my prescription, which is mailed from Washington State, went out on the 4th, and hasn’t gotten here yet. I took some extra tablets during the trip to DC, and that means that I ran short at this, the end of the Rx month. So yesterday I discovered that I had two tablets to last me 24 hours, when my normal schedule is one every six hours. That normal frequency, of 600 mg each, every 6 hours, is just enough to keep me normal. I’d been hoping to get the gabapentin dosages increased, because I am getting “bust-out” pain – it rattles its cage so badly that it breaks free and mauls the zookeeper at times. My doctor won’t prescribe me more gabapentin; she wanted the Neurology Department to prescribe it to me. When I went to the Neurology Department, the doctors there  said they don’t handle prescriptions for CPS anymore; they sent me to the Pain Department. “We’re using a new protocol,” said the neurologist, Dr. Schneider. “We don’t prescribe more than 2400 mg a day. We find that it’s more effective to combine it with something else.” What is that “something else”, I wonder. I can’t find out, because the Pain Department hasn’t returned any of my calls!  The Pain Department was very abrupt and unhelpful, when I called them. “Well, we only see people who’ve been referred to us,” the assistant said. “Well, Dr Schneider said he sent a referral over,” I responded. They said they would check it out and call me back, and I haven’t heard squat since.

Anyway, here I am with too little pain relief to begin with, and now half a dosage of that already-insufficient amount  for the past 36 hours. It’s at times like this that I thank God my gabapentin DOES work, and that I normally have a sufficient dosage to assuage the pain. I can’t describe the pain; it’s like a combination of a sensation so bad that you want to break down and cry, or break things in madness, and the most intense irritation you can think of. Imagine an itch that only grows more intense as you scratch it – or perhaps the sound you can’t stand  – the sound of corduroy against your grandmother’s upholstery, or a screeching of a rubber balloon, or the prickle of freshly cut hair trimmings in your sheets, or that one sound or light or smell or fabric you just cannot stand ..- but so much worse, you would kick a cute puppy if it got in your way. It is that irritating, that infuriating – all the more so because you know that there is absolutely nothing you can do to get it to stop. It won’t stop hurting. It won’t stop bugging you. You can’t distract yourself from it. Traditional meditation techniques, self-hypnosis, relaxation techniques of all varieties – none of them work. All forms of Medline, both traditional and non-, have nothing to offer you.  Just deal is your only alternative

Now this increase in discomfort and torment of mine is because I am taking half my regular dosage. I’ve had to split my pills to make 4 tablets last for 48 hours, until the mail brings the next prescription, or I can get another approval from my doctor. If this is what half my dosage does to me, I shudder to think of what running out completely would do. The memories I have of the times I’ve been completely without are vague, and almost unbelievable: reduced to sobbing, tears running down my face uncontrollably, crawling on the floor in agony unable to stand or work, unable even to get drunk enough to pass out because the pain just will not let you rest,

What would help me get through the next 12 or 24 hours?  I wish I had some really good weed to help me get through the hours until I can get a refill and get back on my regular regimen. What I really wish I had was some Ecstacy, which I had a couple of times in the ’80s. That would not only make the pain vanish, but it would also help me understand why in Hell this happened to me. Maybe I could feel at peace about it then. Because CPS pain makes you wonder about Fate, God, guilt and luck – all the moments, coincidences and twists that led you to the state you find yourself in.

I know that I don’t have CPS, and the life it creates, as badly as most of the people on the CPSA – at least  I think so. So many of us are absolutely devastated, unable to do anything more than wake up, socialize with family a bit, a little housework or something else – and some can do nothing, nothing at all, but be awake and wait for tomorrow. I am able to do so much more when I am feeling well, at least in the hours that I can actually work. It’s perhaps 8 hours a day now, which is a marked improvement from two or three years ago. I am in a lot of pain, but it is obviously nothing like what I am feeling now, and what so many CPS patients feel all day long, all the time. The Spinal CPSers, especially, have nothing like gabapentin or Lyrica. All they have are the opiates that I am certain I would want if the anticoagulant didn’t work for me.

Tomorrow the mailman will arrive with my refill, or I will call my local pharmacist and get it refilled with him – albeit at at cost of twice as much.I will take my regular dosage. My pain will my manageable again. The extreme crushing feeling, the attention-demanding battery-acid-right-under-the-skin feeling – they will be gone. In that regard, i am blessed. Feeling this bad right now reminds me of how much there is to do, while I still can. The only chance that I have for a treatment, much less a cure, is if I create the demand myself – if we create the drive ourselves.There is no white-coated savior coming out of the television programs, a combination of House and Dr. Kildare, who would devote him- or herself to curing this disease. We have to do it ourselves. This past day is reminding me of just how difficult it is. How can we, disabled by this pain, save ourselves? Yet we must.

Yes, this pain is disabling. More than the irritation and the agony, it is the pain fog, the mental swirling, that this condition creates.  There is a profound sense of disconnect from your own intellect that being in this constant torture creates. The pain is dizzying, and the over-the-counter options that are provided by American capitalism, namely alcohols, don’t make thinking any less fuzzy. But I wouldn’t want to drive in the condition of being pain-ridden; it is more dizzying than scotch and red wine, and just as nauseating.

It is also depressing. I was in tears earlier, asking God what I had done to deserve this. Usually I don’t think about this condition in terms that imply religious guilt of some kind. I was raised a Roman Catholic. I was taught by the nuns and  the priests to believe that you would get your just desserts in the afterlife, either Heaven or Hell. I no longer think that way, and I don’t believe that people get their just desserts in this world, either. It’s American to believe that you are in control of your own fate. At least Americans believe that about themselves – it’s only foreign, or historical persons who suffer a fate that they don’t deserve, like being blown up in their trains or buses, or being gassed, Americans are supposed to be in control of their own fates. That’s why 9/11 infuriated Americans so – just being blown up at the office like that! That isn’t supposed to happen to us! We are supposed to control our own destinies. If we are rich, that’s because we did it, all ourselves. It’s the same with being poor. We are supposed to transcend the accident of birth. We are “‘self-made.” If bad things happen to you, like a heart attack or a foreclosure, it’s because of something you did, or didn’t, do. No wonder one-quarter of the population is Roman Catholic. Our national value system meshes perfectly with the lessons of the Baltimore Catechism.

But today there was no comfort to be had in the teachings of my childhood faith. What could I have possibly done to deserve this? Why me, when so many other people were free of this curse? Why did I have to keep on suffering. in pain from practically the moment I was born? What have I done to deserve this?

Well, nothing, of course. Nothing “makes” a person deserves CPS, anymore than an infant deserves a congenital fatal disease, or a than a doctor in Cambodia deserved to be slaughtered by Pol Pot, or than the Lenape deserved to be murdered by the immigrants from England and their germs, or the residents of the Sixth Ward of New Orleans deserved to lose everything. Bad things happen to good people, and it’s got nothing to do with some great cosmic payment. This would be a kinder and easier world if we only acknowledged that fact, and built it into our policies and values.

Well, sooner or later I will get so tired that it doesn’t matter how much it hurts,. and I will be able to stop being awake. The pain will percolate into my dreams, of course, so they will probably be unpleasant, as they so often are. Dreams of being persecuted by government forces, or being chased, or lost, or unable to find my family, or being imprisoned….sometimes I dream I am in a burning building, or in a war zone, or starving or homeless. There are a lot of situations that can serve as metaphors for pain. But it’s better to have bad dreams, than to not get any sleep at all. At least it’s that way for now.

So much to do…

2 Comments leave one →
  1. Gloria Brimm permalink
    February 14, 2012 4:40 PM

    You are an extraordinary writer. I can’t believe you could formulate these moving phrases that reach to the heart of our common circumstances. Your words stop my comfortable delusion that I’m not dependant on the availability of a Lyrica capsule or my quality of life disintergrates. Could there really be a solution? I’m afraid to hope. I used to be a strong activist in moving my life beyond what I was given. I don’t know where that me is anymore. I will keep reading. Thank you. Glo

    • February 14, 2012 6:42 PM


      Thank you so much. The problem we face is how to communicate this disease to the world. It’s so difficult to capture the sensation of CPS. “Pain” is not enough, and yet it encompasses everything. I, like you, used to be an activist, always convinced that there were things that could be done to make my life, my community, the world, a better place. CPS leaves us feeling ultimately powerless, because we can never control it. We always know that it is waiting to flay us. All we have to do is make one mistake, such as leaving the bottle on the bedside table when we go away for the weekend, or not getting to the pharmacy before it closes. We are lucky to have a pharmaceutical treatment – but we are also slaves to the tablets or the capsules.

      We want the freedom of health. We want a cure. The fact that the 501(c)(3) is going to become a reality – I swear to God and all of us – gives me strength and a sense that all this suffering is worth it – if it results in a cure.

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