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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Validation and Pain Management

October 24, 2011 at 5:45 pm (Chronic Pain, Medical) (, , , )

I don’t have a lot of typey-typey in me today, but I really wanted to write about this, so I’m going for it.

I got linked to this wonderful pdf by Sylvia Brallier, who is cool person who also suffers with chronic pain.

It is a pamphlet-sized document about the treatment of “intractable pain”, or long term chronic pain.

I loved this for a few reasons:

1. It helped me come up with some new ideas to talk to my pain management doctor about. Although I have a “breakthough” med, he and I both know I take it every day as a compliment to my longer acting med, and not just at times where my pain is worse than normal. I would love to have some emergency med that I only took when my pain is really bad – like last night.

2. It addressed the silly notion, that I hear all the (expletive) time, that opioids cause pain and life is better if you just give them all up. I have heard this from actual doctors. I have doctors blame all sorts of symptoms on my pain meds and when I tell them that I would like to investigate other options, that I accept it could be the meds but it could also be a real physical issue. I had to leave a neurologist because he blamed everything, everything on my opioids, which he felt were way too much for someone my age.

3.It made me want to investigate further this idea that I am “sensitive” to opioids. We have noticed that my body loves narcotics, and while others can take ’em or leave ’em at will, my body lets me know under no uncertain terms when my bloodstream is low on narcotics. It’s not that I feel more pain, although that happens too, but that I start to exhibit signs of withdrawal. I wonder what causes this, if other people experience it, and what can be done to mitigate it without just discontinuing use. I mean, I’ve been thinking about going drug-free for a while to see what would happen once my body was clean, but the idea of no pain meds makes everyone involved in my life, including me, a little apprehensive. Also, my upcoming schedule doesn’t allow for such a time.

4. I really wonder if I’m a candidate for an implant.

5. Lately, with the whole Fentanyl experience, I have been feeling very ashamed of my need for pain management drugs. I feel like I’m letting people down when I consider going back on Fentanyl once the TB is treated. I mean, there are good reasons for me never to touch the stuff again, I know, but now that I’m more than a month clean of it, I know that my pain is no where nearly as controlled as it was.

6. I sometimes wonder if people really understand how much pain I experience. Last night it got so bad that I literally wept. And I’m not a big crier. But I was at “no more cope”, and I had no more interventions at hand (after drugs, TENS unit, massage, acupressure, and meditation/breathing) I just had to wait it out. It renders me completely unable to do anything at all. On a normal day, everything I do is weighed against how much pain I can tolerate. Even typing this. Even going to the bathroom. Even feeding myself.

So it felt good to read something about pain management that was effective and positive and helped me feel like I deserve to get some relief, even if we have no idea why I am in pain to begin with.

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Mistress Poppy

October 13, 2011 at 5:14 pm (Chronic Pain, Medical, Spiritual) (, , , , , )

Author’s note: Although I have not yet read Kenaz Filan’s book, The Power of the Poppy (available here ), I have had conversations with hir about the subject. I have also read, and suggest that you read hir interview with Galina Krasskova on the subject here . Finally, Kenaz is, in general, a prolific writer on many subjects related to neopaganism, shamanism, and the Path of Sacred Plants, and hir blog can be found here:

This entry is inspired by hir work with Poppy as a plant ally, hir open and direct discussions about harm reduction and addiction, and hir feeling that these are things that should be more openly discussed in the neopagan and shamanism communities. So Kenaz, thank you for blazing the path for this entry.

It is no secret that I am in pain management therapy, and see a specialist for various legal, prescribed opiates for the management of my chronic pain issues. Currently, I take both oxycontin and oxycodone; in the recent past, I had to be weaned off of Fentanyl transdermal patches due to a severe interaction with a course of drugs I will soon begin. I have also received Vicodin ES from this doctor as well.

The spirit of Poppy has me strongly tied to Her, and She is my Mistress. Not in the dirty, cheating on my spouse sort of way, but in the power dynamic of submissive/Mistress. Some days, we have a happy relationship – I admit, without these drugs my life would be a lot more difficult. However, my pain doc has noticed that I am extremely reactive to these drugs, insofar as I exhibit signs of addiction easier than most. When I was on the Fentanyl (on 100 mcg patches, which is as high as they go), my body would begin going through early withdrawal if I was simply an hour or two late in changing the patch. According to the doctor, some patients could have the patch fall off completely and they only way they would know is that their pain would slowly increase.

Not so with me. I would begin rocking back and forth uncontrollably, have a strong need to shake my legs and arms, lose control of my emotions, and in extreme cases, become violent against myself in hopes of quelling the terrible feelings I had. Even now that I am “clean” of the Fentanyl, I can tell when I am as little as half an hour late taking the oxys; I start out feeling grumpy and in more pain, but within an hour I am lost in those early feelings of withdrawal again.

In addition, I have to take these drugs at very specific hours of the day, and there is very little flexibility in that. I wake up in the morning not because I am finished sleeping, but because my body knows that my opiates have run their course. However, sometimes I wake up two or three hours before my morning dose is due, and if I take it early, it will throw off this delicate balance – I will start jonesing for my afternoon meds early, and then my evening ones; which leads to me waking up even earlier the next day.

I hate this.

When I was on the transdermals, I got the opiates through my skin, rather than from oral doses, and they lasted 36 hours. So the rest of my drugs could be taken pretty much whenever it was convenient for my schedule. Now that they are gone, and I am on oral meds alone, it doesn’t matter what I am doing around 3pm – I need to stop and take my drugs or bad things happen.

Maybe this doesn’t sound like such a big deal to you. There are lots of people who, for a host of other reasons, have medicines that have to be taken at specific hours. I know my friends on oral birth control have plenty of experience with taking their pill at the exact same time every day (otherwise, the pills are less effective). But I don’t think it feels the same. If you miss your birth control, there are life consequences; if I miss my opiates, there are immediate body consequences. I become an irrational individual. My body starts doing things I don’t want it to do, and I can’t control it. I feel terrible all over. My pain eventually spikes and my ability to cope with anything reduces to me staring at a television set until not only I take my drugs, but they actual activate and soothe the withdrawal.

This is now an almost daily occurance. I am working with my pain doc to find ways to make it more bearable, but short of giving up on opiates completely, this is the price I pay to dance with Poppy.

I should be clear – the drugs work, most of the time. I can definitely feel pain relief when I take them as directed. They give me the ability to achieve more life than if I didn’t have them. I have tried non-opiate pain relief, like NSAIDs and herbal supplements, massage and acupuncture, TENS units and meditation. Although some of these things I use to supplement my opiates, none of them work well enough alone to make me functional. I was once admitted to the hospital and part of the problem was that I was taking a large amount of an over-the-counter NSAID in hopes it would help with my pain. (That, in part, is what got me admitted to the pain management program I am in now.)

So my Mistress isn’t always a punishing, mean, abusive Lady. She gives me ease, helps me sleep, allows me to have wonderful life experiences I wouldn’t otherwise have. But Her rules are strict, and I have to give Her homage on a regular basis. For the most part, She doesn’t let me dance with any other potentially addictive substances – I can’t have alcohol socially they way I used to (I still imbibe for religious reasons, but in small amounts). I can’t use illegal substances because the program tests me for them and if I test positive I am dismissed with nothing but a month’s worth of drugs – no help with withdrawal. Caffeine exacerbates the effects of withdrawal, so I have cut most of that out just to be on the safe side. She is a jealous, possessive Mistress who wants me all to herself.

Since I am an animist, I feel like She can even tell when I start talking about letting Her go. I spoke to my pain doc yesterday about my abrupt morning withdrawal sessions and said that maybe I needed to get off opiates altogether. He didn’t disagree with me, but first we are trying some ways of playing with how I am dosing with the various drugs, to see if I can sleep a little later and wake up without being in withdrawal. However, that evening, my pain shot through the roof and I was practically begging to take my drugs early to ease my suffering. She wanted me to know that I need Her, that life without Her would be hard and limited. Even today I am still feeling pretty awful, and that’s with the drugs.

Getting off of the Fentanyl was a terrible ordeal. The withdrawal was severe, even though I was stepped down slowly from 100 to 75 to 50 to 37.5 to 25 to 12 to 0 over three months. I was given Catapress, frequently given to heroin and alcohol addicts who are trying to get clean, for support. I started getting twice-weekly acupuncture treatments that are used for heroin detox. Even then, for a good portion of that time I couldn’t leave the house, I felt absolutely horrible, had out-of-control sessions of shaking and kicking, and couldn’t really do much more than lay in bed and pray for it to end. Even after I reached zero it took me three weeks to feel like I had really kicked it.

Even having gone through all of that, there are times that I miss it and wish I could go back on it. A lot of the Del you have seen over the past three years would not have been possible without Fentanyl. The drugs I am on now are not as strong, not as useful, and a lot more demanding. Sure, it really sucked when my patches unstuck themselves while I was at an event and I started going through withdrawal until I could put a new one on; or not being able to use hot tubs because the medicine was released via body temperature and if mine got raised too much artificially it would release more drug, which would have been dangerous. I frequently got sunburns around my patches because sunblock ate at the adhesive holding it to me. And I fielded the question “Is that a new tattoo or cutting” more than a thousand times when I wore clothing that exposed my patch, and when I told them what it was (not as cool!) the conversation almost always got awkward.

Right now, I have to stay away from it because I have to start the TB regimen, and they don’t play together. (We tried it in June and it sent me to the hospital.) As it is, the TB meds will also make the oxys that I am on work less efficiently, so who knows what will happen then? I don’t want to increase my dosage, which could lead to a stronger addiction reaction, but I don’t want to suffer in pain, either. But I can’t say that when it’s over, I will face a tough decision about whether going back to Fentanyl is the right choice for me. It’s one of those “rest of your life” drugs at this point – if I do it, I am doing it with the intention of never going off of it again.

But I don’t know. I wish I felt like I had real, equitable options. I mean, I always have the choice of going off the opiates and just learning to live with the pain, or to rely only on other, less addictive meds like toradol or ultram. It would be wonderful if the doctors would figure out what was causing my pain and treat that, but at this point that feels like a pipe dream. And I figure even if they figure out what’s wrong with me, it doesn’t mean that the pain will go away; it just means they’ll be able to explain it.

So for now, I dance the terrible tango with Poppy. She runs through my veins and brings me a false sense of peace. She is a horrific nursemaid, but She’s the only one I’ve got.

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