The pain issue…

It’s been about eight and a half years since I’ve had a doctor willing to work with me on pain management. This has been very, very difficult because Lyme disease IS inflammation (among other things) and, to oversimplify, inflammation IS pain. Which means I’m in pain a lot, in case that didn’t come across.

When you have Lyme, finding a doctor to work with is a bit of a nightmare. Most doctors believe it’s a cut-and-dried infection, easily curable with a two-week course of antibiotics. This, however, is not most Lyme patients’ experience, especially if we weren’t diagnosed and treated very promptly (and even if we were, more and more evidence is mounting that a month is safer, or even a quick and decisive I.V. antibiotic regimen). The doctors I’ve been working with are necessarily alternative; simply by diagnosing me and treating me they’re running against mainstream medical ideas about this disease. But, while they’re certainly not stingy with the antibiotics, pain management has been more along the lines of trying to sell me supplements (I don’t like or trust the fact that these doctors always seem to try to sell me supplements, but it seems to be inevitable) meant to reduce inflammation, etc. than prescribing pain medication.

Sometimes, though, a girl needs pain medication. I am tough. Sometimes I blow my own mind with the sheer volume of unpleasant things I’m able to weather. But still, there are days when I’m completely incapacitated by pain, and they’re not exactly rare. I will admit, I want access to something fast and powerful and not at all alternative at those times. As someone who doesn’t drink, doesn’t smoke, and has never abused anything prescribed to me in the history of ever, I think I should get it. Hell, I’ve eschewed all gluten and dairy for almost two years now. Don’t even step to me and question my willpower; it should have apprentices. But it’s really hard to convince a doctor of that, apparently.

And I’ve figured all along that it isn’t really worth it to try. You’d think that after your life has done a swan dive into poverty, disability, and constant pain you’d run out of tosses to give about whether some doctor somewhere writes “drug seeker” on your chart. But that’s not exactly true. There’s a certain amount of vulnerability and emotional energy involved in telling a doctor exactly how difficult things are for you and asking for the kind of help you’ve learned to believe they’re unlikely to give. It’s demoralizing to keep hemorrhaging hope and money trying new medications that simply don’t work. But the pain has been so bad these past few months.

So I’ve been looking for new pain management options lately. There are a lot of medications that aren’t painkillers, per se, but fiddle with one’s neurology to prevent different kinds of pain. These, obviously, are a lot easier to get ahold of than, say, opiates. I was only determined that I would not try Lyrica, since I’ve heard and read so many reports of terrible side effects, one of which is depression, something I’ve been struggling a lot with over the past year anyway. So I got brand new scripts for Ibuprofen 600s (which on a bad day is like restraining a mastodon with dental floss, but it ends up being much cheaper than buying it over-the-counter) and Neurontin, which I later learned is an older sibling to Lyrica.

Once I realized exactly what I’d been prescribed, I wasn’t exactly in a tizzy to start it. But there are several reasons I decided to try the Neurontin after the kind of soul-searching that only arises from excruciating headache pain:

  1. To be sporting.
  2. Naked desperation.
  3. I realized that the dosage of Neurontin prescribed was comparatively tiny, about one tenth per day of what seemed like a modest intake for the average internet denizen. Surely this would minimize the potentional side effects. Surely! Wouldn’t it?
  4. I was really in a rather lot of pain.

So I swallowed 100mg of anticonvulsant and hoped for the best. An hour or so later, the best was almost certainly not happening. That minuscule amount of medication I’d taken was giving me a pronounced anxiety attack. I wasn’t panicking, exactly, but everything seemed wrong and upsetting– everything. The moon made me want to cry, not in an “isn’t this so poetic and beautiful” way, but in a strange, new “the existence of this moon is hugely frightening and unsatisfactory to me right now, and I have no idea why” way. I couldn’t read. I couldn’t listen to music. I couldn’t do anything without feeling miserable and slightly paranoid.┬áThe new med also brought on considerable nausea. All this, without an iota of pain relief. It felt like my headache may have actually gotten worse, but it could have been the baseless terror talking.

Is it still called a “side effect” if the main effect isn’t actually happening? Never taking Neurontin again, even if it begs me. And my pain situation remains unadjusted. Not ideal.

I kind of just wish someone would give me weapons grade painkillers and trust me to be responsible and sane about them. Because I would be.

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3 Responses to The pain issue…

  1. Alex Ackley says:

    Sorry to hear you’re having problems getting the pain managed. I spent years taking opiates to try and stop my pain until I got to the point where they just were not working. Recently, I’ve had luck with a full cocktail of drugs including lyrica, cymbalta and a couple of anti-depressents. It doesn’t stop the pain but most days are bearable.

    Hang in there, the doctor should be willing to try something else. I went through a ton of drugs to get to ones that worked for me.

  2. [I didn't mean to, but I wrote a novella.]

    I’ve been on Neurontin/gabapentin before, for years at a stretch. I felt no appreciable difference when I stopped it 2 years ago. I did, however, notice a rise in some of the more undesirable aspects of my personality when I first started taking it (for peripheral neuropathy) – I didn’t give a FUCK, and I was suicidal-depressed while somehow simultaneously being the most paranoid/anxious I’ve been in a while. That was a great start to my marriage, lemme tell ya…and I was on 300mg. After a few months…it was like taking aspirin. “Meh” would be the word I’d use to describe long-term efficacy.

    The ibuprofen (that dosage, actually), 3x per day, however? Did help. I don’t know why or how, but I’ve been taking it that way for years, and I NOTICE when I don’t have it one day, and it’s not psychosomatic…I’ll just look at my pill box and go, “what’s missing?” after feeling like ass, and bam – the ibuprofen is gone.

    The ONLY reason I get narcotics is for my menstrual cramps, and while I don’t abuse them, I get enough monthly that if I’m having a particularly bad pain day, I will take 1/2 of a pill (they’re…strong) to get through something, or to sleep when my hips or back are refusing to cooperate with any position I try, pillows or no. My GP’s office is one step away from sending me to a “Pain Management Center,” which I’m imagining is a lot like what you’ve described, but since I’m having this surgery, they won’t have to prescribe the narcotics any more, and we’ll all be happy, I suppose, until I don’t have those extras lying around to use ICOE for the Lyme…and I’m honestly scared of that. That doesn’t make me an addict – it makes me someone who knows that the lack of something will cause problems, even though that something isn’t utilized very often.

    I just got off the phone with some folks asking questions (will talk about it when I’m able – right now it’s a battle to write about much regarding much coherently), and one was, “how long can you sit in one spot before you feel you have to move?” I started CRYING, because I can’t sit still. Car trips are torture. I have a donut pillow…and I don’t have hemorrhoids or a tailbone issue. Memory-foam mattress-topper? Good try, here’s a ribbon of participation! Etc. I’m in a damned wheelchair when I go out, for cryin’ out loud, and THAT hurts.

    And people don’t get it. They think that lying in bed all day should help, and it doesn’t. Getting up and moving should help. It doesn’t. Nothing helps. It’s just there. Sometimes narcotics don’t even help – they just help you forget because they make you dopey.

    Part of that was rant, part was advice (give the ibuprofen a go – the all-at-once dosage does make a difference, just watch your stomach), and part of it was commiseration.

    I hope you find something, soon…and honestly, if you have to use your uterus as an excuse, DO IT. I happened to be born with a broken uterus that was exacerbated by Lyme, but more and more doctors are on board with the viewpoint that just because you’re supposed to bleed every month, that doesn’t mean that you have to be bedridden and vomiting from cramps. You’re old enough to know what works for you and what doesn’t.

    *hugs*

  3. Deebra says:

    I was told I had Lyme disease about 1980, when my ankle mysteriously developed severe arthritis. When the doctors injected steroids into the joint it made it far worse and the joint completely froze up. Having no other option, they had to operate and took tissue samples for testing, which turned out to be positive for Lyme (several years before I was bitten on that ankle by a deer tick while hiking in CT). I was told there was no known treatment and it was a fairly harmless disease that limits itself usually to a single joint. What BS! I now have a wonderful doctor who understands what kind of pain we must endure and will even explain how it is caused. He is extremely compassionate and has several MDs and is a pain management specialist who is ILADS certified. I never so much as took an aspirin all my life, as I was totally into health foods and used a Chinese physician who had full MD from China, meaning he had a lot more knowledge than just a certificate in acupuncture. Until I was devastated by Lyme and just about every co- infection, I only used my Chinese doctor who gave me herbs and or acupuncture, along with other treatment modalities that always worked. Year later when the Lyme and co-infections got worse as I had been bitten again, a regular physician refused to give me antibiotics and swore I did not have Lyme because an Elisa test was negative (I didn’t know what I wished I had then). I went to my Chinese doctor to see if he could help me. he said could not get my immune system to attack this invader. After several tries, he told me he would take more money from me (he hardly charged me that much anyway!) for he is a very honest man, and said he thought I had something man made attacking my system! I was in such terrible pain I could no longer sit at my desk at work, so I started going to a chiropractor who also gave great deep muscle massages, but that only gave very temporary relief. Finally, I gave in and took Allieve which made the pain just bearable enough for few months, then it the pain got worse and the Allieve destroyed my stomach. I am ever so grateful now that I have a doctor who will give me muscle relaxers (I have Babesia really bad too) and real pain medication. While I don’t give a hoot what others think it still annoys me that my friends and family who flat out refuse to learn the most basic things about this scold me for taking pain medication! I also feel the stigma from my pharmacist who knows zilch about Lyme and thus as to why I am getting these drugs. The entire medical profession and supporting businesses must be educated about the realities of tick borne diseases, especially since the CDC ate humble pie on August 19 and told the nation that this is biggest epidemic facing us today. They must begin educating these professions immediately, as it is their fault for all the ignorance in the first place! It is indeed very hard to find a Lyme MD who will prescribe pain meds – I was told mainly because they are already afraid because of prescribing the long-term antibiotics and they don’t want to get on the “radar” for prescribing too many pain meds. As far as I know, there are very few pain management specialists in the US who believe advanced Lyme disease exists, let alone causes pain. This must change! I think the reason most Lyme victims commit suicide is not depression, it is endless pain and the resulting sleep deprivation. Keep searching, I think things will begin to change soon. And, never feel bad about taking pain meds, even though they are somewhat horrible and pharmaceutical companies should be ashamed of their total lack of progress in the development of much more effective and safer pain killers. As for Neurontin, never ever take that crap! It is not even legal to prescribe for pain relief, I believe the manufacturer got fined for pushing it for “off label” use! I tried that before I had a doctor who would give me pain meds and it did zilch for pain relief and tons for horrible side effects. Same goes for Lyrica, which I think should be taken off the market!

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