It’s a Pain, Being In Pain

March 16, 2012 at 4:30 pm (Chronic Pain, Living With Chronic Illness, Medical, Tuberculosis (Inactive)) (, , , , , , , , )

This is likely going to be a bit ranty at times, so there’s your warning.
We all suffer

If you’ve been reading this blog for a while, you know that one of the biggest things I struggle with in my disability is that I suffer from a multitude of pains and after four years no one can give me a straight answer as to why. I have nerve pain and irritation, muscular pain and twitches, GI cramps and soreness, and don’t get me started on my uterus that I can’t seem to have removed even though I’m 37 and not interested in having children seeing as my spouse is infertile.

I am incredibly lucky that I was accepted into a pain management program. There are many people out there who suffer from intractable pain and have to beg to get the smallest amount of treatment, because regular doctors (and even some specialists) hate dealing with the rigamarole surrounding long term opiate therapy; there are a lot of potential risks on the doctor who prescribes that stuff. That’s how it all started for me; a few doctors would give me a handful of Vicodin or some other lower-level opiate and when I told them it really helped and made my life a little more livable, they’d freak out and tell me that it is only a temporary solution and they were done giving me any.

I was finally referred to a rheumotologist because one of the sillier neurologists I have seen decided that I had fibromyalgia and needed to get the heck out of his office. (He and I didn’t get along so well, can you tell?) She was a lovely rheumo, but we quickly discovered that I do not meet the diagnostic criteria for fibro, and I continually test negative for lupus (even though my mom has it, and there’s a (small) hereditary link and boy do my symptoms fit…), she was not willing to take me on as a patient. However, when I told her about the super amounts of pain I was in and how it was deeply affecting me (including a hospitalization that came, in part, from me taking waytoo many naproxium sodium – Alieve – in a day. You’re supposed to stop at 2. I was getting some effect from taking 8) that she was willing to write me a recommendation for the pain management program at a local hospital.

A Sign

It wasn't this easy to find.

When I arrived, I had received a little relief from my hospitalization in the form of 100mcg fentanyl patches. (Later, I was to learn, that some patients who are started on that high a dose die because it’s too much too fast.) That seemed to outline to the pain doc how serious my situation was. So he gave me some low dose Vicodin as a breakthrough med (to be taken when your pain spikes, but not every day) and we were off to the races.

For a while, things were great. The Fentanyl really helped make me functional, I didn’t have many side effects, but I did start taking the Vicodin on a more regular basis. This is when I learned one of the secrets of my pain doc:  if you’re still in pain, the answer is more pain meds. He upped the strength of my Vicodin, and then upped how many I took in a day, etc.

Then the weirdness with the Fentanyl began. I would get these incredibly odd sensations within a few hours of when I was supposed to change my patch. My pain would shoot up, and then I’d start needing to kick my legs or rock my body or shake my arms (all standard signs of withdrawal). I would get very nauseous and basically lose any focus I had. I’d be like that until about an hour after the new patch came online. Then it was four hours before. Then six. It kept getting more and more severe, until finally I called the doctor and was adamant that I needed to be seen ASAP because this was getting out of control.

It turned out that I have a intense sensitivity to the level of opiates in my system. Once we establish what “okay” is, as soon as I drop below that level, my body freaks out and does everything within its power to convince me to FIX IT NOW. My doctor kept telling me stories about patients who would only know their patch had detached when their pain got worse – several days later. I was going crazy if I was 15 minutes late. So we shortened the duration I wore the patch for, and that seemed to make everything okay.

Until I tested positive for TB.

One of the first things the ID doc wanted to talk about was my opiates. It seems that there’s a metabolite that the TB drugs use, that is also used by opiates. So when the TB drug shows up, it knocks all the opiates out of your system and takes over. They thought that the biggest risk was the Fentanyl; on a scale from A to D where A is A-Okay and D is Don’t Fucking Bother, Fentanyl was a D. But we tried it anyway and I ended up in the hospital. It really sucked.

So it was decided that I would wean myself off of the Fentanyl and move to oral meds. This took three excruciating months, most of which I don’t remember all that well. This ended about a week before I started Dying for a Diagnosis. I was still sick all the way into October, which is why the trip to Disney was a little strained. However, in the end it didn’t matter – we tried the TB meds again and I had the same reaction while taking oral meds that I did on the Fentanyl. :sigh:

Since then, I’ve been taking oral meds, but they’re not helping much. I suffer from dramatic roller-coaster like effects all day – I am forcibly awakened at 7am to take morning meds, regardless of if I went to bed at 11pm or 4a. I have to wait an hour before I can go back to sleep, waiting for the pain to recede and the withdrawal to calm down. Then, at 1:30p, my pain spikes and I start to lose focus. I’m like that until almost 3pm, when my afternoon meds take hold. This repeats at 7p, even though I take half my meds then and half when I go to sleep.

Yesterday, I went to my pain doc and laid it out for him: I’m miserable; the pain meds bring me, on the best day, to a 4 on the pain scale, and on most days I’m a 6; and this roller coaster makes it hard for me to live like a human being outside of my home. Even recently, I was at a movie when med o’clock crept up and I couldn’t sit still and relax until I took my meds. Sometimes I take them early, if I have to be functional at a time I’m usually not.

I asked him, “Please, is there any other options? Other drugs? Other treatments? Alternate dosing schedules? Something?” And I got the one answer I didn’t want – increase my drugs. I’m not terribly sure how this is going to solve the roller coaster issues, but I threw any and all ideas I had at him – spinal implants, electrical implants, different meds, different dosing schedules, different routes of intake (IV, etc), anything! And one by one he shot them down, not in a mean way, but that’s just not what he wants to do with me. The only light at the end of the tunnel is a drug that’s currently experiencing a shortage – Opana – which might help with some of my issues. But he sent me home to “research” it and if/when it comes out of shortage we can talk about doing a switch.

All this, so I can feel like a normal human being.

I hate that I need opiates, but I do. They do work for me. They do reduce my pain levels. Without them, my pain is almost always a 8 or higher. With them, although there are still times (like this week) where my pain is pretty bad, there are also times when I can get up and walk around and do things with little difficulty.

I hate the agreements I have to live under in order to receive these meds. This is a sample pain management contract that is similar, if not the same, as the one I am currently beholden to. When you read it, it all sounds reasonable, until you’re actually living your life and realize that it definitely has drawbacks.

1. I am randomly drug tested. Not only is my urine checked for illegal drugs, it’s also checked for levels of OTC meds, as well as the opiates I’m prescribed. If my opiate level is higher than it should be, they assume I’m receiving opiates from another source and I’m booted from the program. If it’s too low, I’m selling my drugs and goodbye. If my OTC levels are too high, I’m booted for not using them responsibly.

2. If I am booted (either for failing the piss test or for breaking another one of the sections) you are given a month’s worth of drugs and that’s it. So I am expected to detox off of years of opiate use on my own, with no medical supervision, and do it in 30 days. Remember, it took me over 3 months to wean myself down off of Fentanyl, and even then I was doing it “kinda fast”.

3. I can’t rack up any record of me being publicly drunk. Even though the contract addresses drunk driving specifically, I was instructed that any arrests that were alcohol related also meant I’d get the handshake of doom.

4. When things got really bad and I started taking a few more drugs than I was supposed to in a day, I was in violation of the contract. Luckily, this is not a bootable offense; instead, they just don’t make up for your shortfall. Even though I called them three times and told them I was feeling really terrible and the only thing I could do to feel closer to normal was to take more of those drugs, and they made me wait a week before they could see me, and by then things were out of control; I was still the one who got in trouble for “misusing” my medication.

5. If another doctor tries to give you narcotics, you have to instruct them that you’re in pain management and all narcotics have to be approved by your pain doc. So if I take X for maintenance, and then somethingeven more painful happens to me, my experience has been that once I tell them they have to call Dr. Pain to give me opiates, they just don’t bother and tell me to take Tylenol instead. (See above about abusing/taking too many OTC drugs.) The only exception is in the hospital; you’re allowed to get whatever the doctors give you, but you have to get a printout and bring it to your next pain appointment.

6. Doctors always encourage you to keep a small stash of pills in case of some emergency, like a blackout that lasts longer than a day or two, or if your pharmacy is out of your meds the day you need to refill. (You’re only given the exact amount of medication you need to get from Day 1 to Day Refill, no more.) However, because you’re given a very precise amount of meds, this means you have to skip doses and hoard away what you can.Except that it’s in the contract that you must turn over unused drugs. I got in trouble for holding onto some Vicodin when I was switched to Roxicodone; it was my plan to keep the Vicodin as a secret stash. But the doc figured it out and told me I had to turn it in. It’s pretty hard for me to skip a dose, so I never have a stash.

7. I know I mentioned this in six, but I’m reiterating so I can tell another story: You are given precisely enough drugs to get from Day of Refill to Day of Refill. The scripts have “Do Not Fill Before” dates on them. For me, this means I am usually completely out on Day of Refill. This is why you’ll frequently see me frantically looking for someone who can go to my pharmacy between 11 and 1; I take my drugs at 2 and if I’m out, I can’t wait until Ninja comes home to pick them up. This gets even trickier when Day of Refill happens when I’m out of town. I have to call ahead, explain the situation to the pharmacy, who then has to call and verify with my doc that I’m a real patient with a real script, and they also have to have whatever I need in stock. I recently had to do this dance in NJ, and it really sucked.

8. At one point, someone else accidentally threw out some of my meds. That was a fiasco.  I was storing them in a cooler because it was a camping event and the patches are heat-activated. So they took the cooler home at the end of the event and just threw everything in it into the trash in one fell swoop. An oversight anyone could have made, and I am not angry or blame them for what happened. However, getting those back was a nightmare. The contract states that if I lose my drugs, I’m SOL. However, I tried to explain that it wasn’t me who lost them, and that it was a legitimate story, and I was going to be very sick if I didn’t get them back. I still had to wait over four days for the docs and the insurance to agree to replace them, and by then I was Wacky Withdrawal Del.

9. I’m only allowed to use one pharmacy to get all my meds, opiates or no. They can and do check to make sure that happens. Remember that whole, “But I go out of town” business? Yeah, I have to account that I actually got my script filled in another state and am not receiving drugs from another provider. I’m not allowed to “shop around” to get my drugs, even when my pharmacy is out of what I need, or if someone else holds a sale.

10. If my doc decides that my situation has a psych element, he will refer to me to a psych and if I decline to go I can be booted from the program. Hurrah.

And before you say it (and please don’t), I have tried a multitude of other pain management options. I’ve done the Reiki thing, the acupuncture thing, the chiropractic thing, the herbal tea thing, the changing my diet thing (which I’m about to do again), the exercise thing, the severe weight loss thing, the meditation thing, the “your pain is a teacher” thing, the massage thing, etc, etc, etc. Some of these I still do, and they’re useful, but not the solution.

When people talk to me about suicide, the one thing I am completely clear and honest about is that I feel trapped in this cocoon of discomfort, and if I didn’t think Loki would kick my ass to Ragnorok and back three times with all eight of Slepneir’s hooves, I’d probably would have done it by now. Because I remember what it was like when I wasn’t wracked with pain, and I know deep in my soul I’ll never feel that way again until I’m dead.

I look at my pain as a reminder that life is never perfect. I can reach down pretty shallowly to connect with other people’s suffering. When I read about the sacrifices various Deities have made in their stories, I feel like I understand because for me, every moment I am out of bed is a sacrifice I am making. I pay for moments of lucidity, a high price for them indeed. I don’t take anything about my body for granted, because there are days when I’ve really needed it to do something and it’s just said “Nope. We’re on strike today.”

I tell people my primary relationship is with my illness, but in actuality it’s probably with my pain.

Even Barbie knows what it's like

Or don't. I've just ranted about it for almost 3000 words.

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5 Comments

  1. Mollie Player said,

    You are refreshingly honest!

    • dying for a diagnosis said,

      Thank you. It’s hard for me; believe it or not, but discussing my medical situation this openly is exceedingly hard for me. It took me two days to spew all of this out, and I went through several edits where I left parts out (the suicide bit got removed and added 3 or 4 times before I decided it was too important). I strive for transparency, because my Gods tell me that what I have to say is just as important to other people. I give many people who suffer a voice, a place to come where they know they’re understood.

      I get emails from time to time from people who read what I write and tell me that they see my experience reflected in their own; it is for them that I strive to be as forthright as I can.

      Thanks for reading!

  2. panoptical said,

    Thank you for posting this. This may sound shallow, but when you talk about being in pain all the time it’s hard for me to actually think through the implications – I literally could not imagine what it would be like – and reading this has helped me to understand what’s up a lot more than I have been able to before.

    So, this might come out of left field, but it’s based on a strategy that has worked for me – have you considered leaving the country? America’s medical care system is pretty bad for a first-world country. I wouldn’t necessarily suggest Georgia for various reasons, but using it as an example, drugs here are generally five to ten times less expensive than in the US and are much less regulated – my understanding is that you can get Vicodin over the counter with no prescription, for instance, and the few drugs that do require special prescriptions aren’t controlled anything near as strictly as they apparently are in the US.

    Anyway my feeling is that you might be better off in a jurisdiction with looser drug control laws and/or a more humane approach to regulation. You also didn’t mention whether you’ve tried medical marijuana, which I suppose you could get in a few US states, but which you could also get in countries with legal or decriminalized pot (Portugal, The Netherlands, etc.).

    I don’t know how feasible it would be for you – in terms of Ninja’s job, moving away from your support network, financing a move, getting visas/documentation, managing pain during the transition, and other logistical things – but it might be worth looking into.

    • dying for a diagnosis said,

      I currently have 2 issues with medical marijuana. Since it’s not legal in Maryland (where I live), it’s considered illegal and carries all the consequences therein, including getting kicked out of the program. The truth is, I used to use it anyway, since I was only seen once every three months and it takes a month to leave your system, but I miscalculated and got caught. When I explained to my doc the circumstances in which I used it (to tempt me to eat after four days of extreme nausea and no appetite), he basically said “I totally understand, but don’t do it again.” He even hinted when I was going through the Fentanyl withdrawal that pot might be useful for that too, but that he couldn’t advocate for it for obvious reasons. (Hell, I wanted to talk about Ibogaine, but that’s a schedule 1 drug in the US too…)

      Secondly, in order for me to get the sort of relief I would need, it would be terribly cost-ineffective. I could either get a lot of weak product, or a little bit of strong product, but since there’s no legalization here, there’s no quality control either.

      I have talked with Ninja about moving to a state where I might obtain legal pot, but NJ is really the only viable option due to what he does for a living; neither of us really want to live in NJ. (And there’s all of four dispensaries in NJ, last I checked.) I’d love to move to San Francisco, but Ninja lived there from 94 to 99 and says, “I loved California, but I hated the Californians.”

  3. Bri Broken said,

    I always feel weird simply ‘liking’ such a serious post…

    Thanks for reminding me that, despite all of the ways that seeing her can be frustrating, I am very lucky to have a PCP who will write the prescriptions for my pain meds. I’m certain that I will move to another state one day, and probably fairly soon… But I dread thinking about my prescriptions in regards to that move because of the nightmare of finding a doctor who believes me and will actually treat my pain in a reasonable way. My meds aren’t as heavy-duty as yours, but most doctors would, will and do balk at writing for them, which has definitely left me in agony in the past.

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