My legs hurt so unbelievably bad. In general I had a pretty bad day.
I’ve been doing yoga everyday. It really hurts, but ultimately it’s good for me.
I just have to keep pushing through the pain.
I almost forgot how bad the pain could be.
I’m so exhausted, I’m trying really hard not to go to bed now.
Some days, just functioning is all I can do.
The pain was horrible today, but at least it wasn’t catastrophic.
I don’t feel like I was terribly productive at work today, but that’s actually a good thing. I’ve been so absolutely drowned in work lately that days like today are rejuvenating*.
If you’ll excuse me; my nerves are conducting a symphony at the moment, and I don’t particularly care for the tune.
*But all immediate and empirical data suggests the opposite is true.
I want to chew my legs off at the hip again. My head hurts so bad I can hardly see straight.
Even my hands hurt.
This could be a very rough week indeed.
I don’t think this medication is working.
Warning: The following post is way too long, and far too self-indulgent.
I had my follow up with my epidural today.
My pain specialist told me I have three options.
Those don’t sound like very good options. She, like every other pain specialist in the book, doesn’t do ‘medication’. No one does. I’m currently on pain medication (read: Pain Killers) but they aren’t strong enough for my level of pain or it’s frequency.
No one seems willing to treat my pain with adequate medication. I didn’t just invent a pain problem, my medical history with pain goes back 26 years, since I was 5 and able to articulate speech enough to tell people I was in pain. Despite that, and the fact that I exhibit none of the warning signs of a prescription drug abuser (at least half of which you can’t actually fake), no one is willing to treat my pain.
I don’t have a right to be treated for pain because my diagnosis “isn’t good enough”.
The DEA (which, oddly enough, is the government entity that licenses doctors to prescribe prescription drugs*) and politicians have physicians so terrified of losing their license for prescribing pain medication except that in very rare cases, it simply doesn’t happen, and when it goes, there are a series of ceilings involved.
This is no longer a question of ‘quality of life’ this is a question of ‘functional’ now.
It’s really hard not to be incredibly depressed by all of this. Personally, I want to punch every high-school kid that ever snorted oxycotin in his mom’s basement right now. I want our entire country to sit down and actually discuss the idea of the ‘war on drugs’. The war on drugs isn’t a war on drugs, it’s a war by a government on it’s own people.
Addiction, and drugs, should not be a criminal matter. It’s a matter of health. It’s so absurd that the DEA, *a federal police agency, licenses physicians to prescribe medication, and not even the FDA, which is at least a health oriented government body.
I don’t blame physicians, I really don’t. I can’t, the subject isn’t even one of public, or personal, health; it’s a political one. I blame our culture. We’re so terrified of people getting high, that we make it impossible for individuals to be adequately medicated for pain unless we’re convinced their about to die.
What the fuck does that say about ourselves as a culture?
Don’t misunderstand me: I’m not whining because I want to get high. I can’t. Opioids don’t get me high, they never have, and I suspect, they never will. The reason, I suspect, is because I’m actually in pain, and I’m in quite a lot of it; or maybe it’s genetic, maybe opioids just don’t work as well on me, but I’m going to assume it’s the pain. They merely help me feel more normal.
The thing about chronic pain that you never think about, and no one ever tells you, is that it starts to rob you of who you are as a person. It starts to hollow you out. It turns you into an asshole. I’m actually a nice guy, but I’m in pain all the time, even Ghandi would loose patience if he had to deal with that. It begins to flavor all of your personal relationships, and it becomes a substantial liability; both in your personal life and your private.
That’s really the worst part. It’s the part that starts to eat away at the very person you ‘are’. I’ve already had everything else erode from me: I’m barely functional (and I don’t know how long I can keep this up), there are so many things I simply can not do, let alone enjoy (including, but not limited to: amusement parks, concerts, conventions, shopping for any length of time, and now, even socializing-in the home or elsewhere, not to mention sex).
Pain is maddening. It drives you crazy, very slowly. It’s this thing, this presence, you can’t get out of your mind. Imagine not being able to get comfortable, ever. That’s just the beginning. It spirals downward from there. It becomes this constant fucking thing you can’t ever not think about.
So of course, they say “Oh, well you’re
crazy mentally ill”: No, actually I’m not, but pain, chronic, insensate pain, is not only depressing, it’s maddening. It becomes this ‘space’ as large as another person between you and anyone or anything.
I’m in love, like really in love, in a healthy way, for the first time in my life. It’s extremely important to me that she not see me as ‘sick’. There’s nothing ‘wrong’ with me, but I’m in terrible, incessant pain all the time.
I have to be able to get a handle on that, and it took someones (sic) else being effected by my own ‘state’ to motivate me to the point where I have to find something that works. I’m willing to suffer, I’m fairly good at it, but I can’t ask someone else to have to sit idly by, unable to help, and share this experience with me.
The stoic in me says I should just push away anyone that would/does care about me that much so as to save them the trouble, the actual/humanist in me won’t allow that. Life without love, real actual love, is no life at all.
A long time ago I made a decision to keep me from ever being actually suicidal: Life, not matter how terrible it may be at times, is still worth living, because in a worst case scenario, that’s all there. I need to hold to life as long as I can, because worst case, it’s all I get. I can’t embrace nothing unless I have to, I’ll have a (literal) eternity of nothing (ceaselessness) regardless, life however, even at it’s worst, is a finite experience.
Now however, that explanation doesn’t seem good enough. Now I have this love thing going for me, and it’s so groovy, I have to find a less awful place to exist, if only for them.
I had almost given up on things ever actually getting better for me, until I found a reason they need to be, because of those I love. It just seems easier for everyone, except me, if I were to give up-stop seeking treatment, but that’s no longer the case.
So, excuse me for being self-indulgent and whiney for a moment but: fuck me.
I can’t let this go. I have to believe that my experiences of pain can be controlled, and that somehow, someway, I can find some treatment or process that works.
If anyone that reads this can relate to even a fraction of my self-indulgent narcissism, well: fuck us; but I’m not giving up yet, you can’t either.
Now the only question is: what the fuck next?
Warning: The following post contains information of a personal and libidinal nature. It’s also long winded. The below contains references to substances or activities that could be considered illicit depending on your jurisdiction, and in the spirit of plausible deniability, please be aware that this post, and the entire blog, is the written under an alias (StochasticLife) and does not necessarily reflect upon the actual identity of it’s author. Also, please note, that the below is provided as reference and conjecture, and should not be interrupted as an endorsement of anything that may be illegal where you live; I am not a medical professional.
Apparently, I have a lumbar epidural scheduled for next week.
I’ve never really heard of anyone having any success with lumbar epidurals and my kind of chronic pain before, but perhaps I’ll be surprised. It’s getting rather difficult to maintain hope however, after spending a less than small fortune on ceaseless rounds of tests, specialists, procedures, and pharmaceuticals.
I’m going to see if I can find someone that will agree to do a spinal tap. I’ve been doing a lot of research into Substance P, and I really want to see what my neurotransmitter levels are in my cerebrospinal fluid. An abundance of Substance P in my system (and a lack of serotonin, it’s ‘off’ switch) could explain quite a few of my symptoms, elevated levels of Substance P:
So, the only way to determine what my levels of Substance P are is to do a spinal tap. There isn’t much one can do for elevated levels of Substance P though, not that I know of anyway. There is current research being done on new types of pain killers that work directly on Substance P, but that’s 10-15 years to market.
So, lets hope the lumbar shots work?
In other news, I have found an unlikely (to me) resource for an often over-looked symptom of my ‘condition’, namely problems with my libido. Fibromyalgia can, and does cause, problems with simply wanting to have sex, or enjoy it. It’s a peculiar topic, and one that’s often over-looked and poorly covered. The vast majority of individuals that suffer from Fibromyalgia are women and problems with libido in women aren’t just misunderstood, they’re often ignored.
The problem of libido and Fibromyalgia are not exclusive to women. To illustrate this point, a metaphor:
Imagine someone takes two or three rolls worth of nickles and puts them in a sock. You are then beaten with that sock for a few minutes at a time several times a day. This will happen to you everyday for a month (a year, 10, 30…). Feel sexy? I suspect not.
This isn’t the only sexual side-effect that comes with this condition, but it is one of the more annoying ones. You can rationally want to have sex, but physiologically your body just isn’t in ‘the mood’.
I recently suffered from paralytic bouts of nausea. The most effective ‘medication’ I found for the alleviation of nausea was medical cannabis.
I think I’ve had problems with my libido, in one form or another, since I’ve had a libido (I have had chronic pain/Fibromyalgia my entire life). It got to the point where I didn’t really even notice it anymore, I had just accepted that as a condition of life.
For me, taking marijuana completely changed my physiological level of interest in sex. I suspect it’s the closest I’ll ever get to an actual aphrodisiac. It was literally a life changing experience.
And it doesn’t take much.
I don’t actually like the sensation of being ‘high’. I did, occasionally in high school, or college, but at some-point I just stopped enjoying it. I reaclimated, to an extent, during my 3 or so months of abject nausea (we’re talking nausea so bad I couldn’t eat, I couldn’t sleep, or even function); I found an appropriate level of ‘medicating’ for myself.
When it came to the bedroom however, I was very surprised: I felt like Pop-eye, and marijuana was my sexual spinach. I had forgotten how sex was supposed to be, what it was really suppose to feel like.
Also, it does help with the pain. It doesn’t make it go away, but it does offer some tangible respite, typically (for me anyway) that really only lasts as long as the duration of the ‘intoxicating’ effect, so it’s not terribly practical, but it does help. I did sleep much better though.
Please, don’t misunderstand me. I hate Phish, the Grateful Dead, and (especially) Dave Mathews band. I have no aspirations of being a pot-head, a burnout, or even a habitual user (now that I don’t require it to eat or sleep), but I do have every intention of keeping some at the ready, close by, when I can (disclaimer -when/where that is legal).
Some of you that may read this also suffer from Fibromyalgia, and you’re experiences may be very different than mine, and I’m not going to recommend any course of treatment for anyone, but if you’ve been reading this and you’ve slowly started realizing that you’re own libido hasn’t been the best lately…if it’s hard for you to remember when you really had great sex, think about it.
To be frank, marijuana as a substance and/or drug is not dangerous. In the least. Legally however, it can easily put you, your family, and your job at considerable risk. The criminalization of marijuana in this country has always been a political issue, and never one of public health.
When I first sat down, this was supposed to just be a ‘I’m apparently getting some spinal injections’ post, but somehow it turned into something else.
That and I really loved the title “Spinal Injections and Sexual Spinach”.
I had an appointment this morning. I thought I was seeing a pain specialist. However, the doctor walks in, looks up and asks me: “Why are you here?”. I told him I thought I was seeing a pain specialist and he then informs me that that’s not what they are nor what they do, they’re spinal cord specialists, and neurosurgeons.
For the past two weeks I’d been talking to those few who even knew about my appointment that I was afraid the doctor would walk into the exam room, announce “I don’t know what to do for you, I can’t help” (even though I thought I was seeing a pain specialist), and send me on my way.
That is in fact exactly what happened.
Then he wanted to MRI my spine, because I obviously haven’t wasted enough money on inconclusive tests (I’m in for several thousand dollars by this point).
Needless to say, I left in a mix of emotions (and $35.00 poorer). I had hoped that I might get a chance to talk to an actual specialist with actual experience with this diagnosis that wasn’t going to turff me as quickly as he could.
When you have to ration out “Quality of Life” as a limited resource, you don’t always get to spend it on the things you want to, sometimes I you have to bite the bullet and spend it on the things you need.
Second night in a row I’ve gotten around three hours of sleep. I went to bed early last night too (I was soooo tired), but I’ve been up since 1:00 and finally gave up trying to go back to sleep.
And today I have to go back to work after a week off.
What follows is fairly long, and it’s not something I actually like to talk about. I recently participated in a research study, and part of that study involved CBT (cognitive behavioral therapy), and during my CBT I was told I should actively work to acknowledging the below more, and what is the Internet for if not self-indulgent whining? I will likely discuss this subject more frequently from time to time, but if it’s annoying don’t read it.
I have chronic pain. I’ve had it since I was a child, and it has gotten progressively worse as I get older. I wasn’t until about a month before I turned 30 that I got a formal diagnosis, so 25 years of unproductive doctor’s vists, innumerable tests, and small fortune in medical bills:
I have fibromyalgia.
I don’t even like to say that out loud.
A lot of people say they feel a lot better when they get the formal diagnosis. I certainly didn’t, I didn’t even consider it to be a legitimate disease when the diagnosis was made. To me, it felt like the doctors were saying “We don’t know whats wrong with you, and we’re going to stop looking”. It was a diagnosis we’d danced around for a couple of years, so I wasn’t exactly surprised, but to be honest I had hoped for something more ‘tangible’ and I really wanted to find out it was something more treatable.
It’s not something I actually talk about much in my everyday life. There are probably only a dozen or so people that know my formal diagnosis, and a few more that know I suffer from some manner of chronic pain. For years, even during rounds of doctor’s visits, I just simply didn’t talk about the pain, fatigue, and other symptoms with except my very immediate family. The medical community had conditioned me from a very young age that since they apparently didn’t know what was wrong with me, nothing was. The thinking was: Why mention it if it apparently isn’t ‘real’. If I don’t acknowledge it then maybe I can simply grit my teeth and endure. However, the reality of the pain I was in began to eclipse my capacity for cognitive dissonance, thus began my last formal round of MRI’s, CT-Scans, god only knows how much blood work, and innumerable specialists of all kinds. During that time, my primary care physician had begun to treat me as if I had fibromyalgia or ‘neuropathy’, so I had been treated for it almost two years before my formal diagnosis.
To be frank, acknowledging I have fibromyalgia is more than a little emasculating. 90% of people diagnosed with fibromyalgia are women. I hate to liken this to cancer in anyway, but it kinda feels like I have breast cancer, but a bit weirder, because many people think as I did and seriously question the validity of the syndrome entirely, so it’s kind of like being diagnosed with fake breast cancer as a man. As a man with fibromyalgia I’ve either noticed, or been told, that there are some unique differences. My pain tends to cluster more, and in clustering as it does, it seems to be much more sever than when it’s diffuse or generalized. My legs are especially bad. My personal ‘flavor’ of fibromyalgia is especially symptomatic too. I was diagnosed with IBS at age 20, and my IBS can be quite severe. Thank god the side effects from the pain killers actually help with that too. In addition, I suspect that being a man has at least one specific biological disadvantage when it comes to fibromyalgia, specifically regarding urinary problems, which again, isn’t uncommon with people with fibormyalgia, but in men specifically there’s an actual organ involved. I won’t get into that specific series of details any further, but needless to say, my number of discomforts seems to know no bounds.
I am loathe to compare such a personal experience like ‘pain’, but my experience with fibromylagia seems to be a bit more severe than is ‘typical’, this is apparently common with people that have ‘early onset’ symptoms, and I’ve complained about chronic pain since I was able to articulate speech. The functional impact of my symptoms is quickly over-taking my ability to simply ‘endure’. That being said however, looking back, I realize I’ve only ever called into work 4 times in 5 years. My reasons are simply that the world does not care if I don’t feel well today, so if I can crawl or hobble, that’s what I do (in my current position I also don’t have ‘adequate’ coverage, I’m really the only person that does what I do). To me, it doesn’t feel like I have a ‘legitimate excuse’, but I’m starting to lose ground there. I do tend to go to the doctor a lot, as in more than most people, but I realized recently it’s because it’s actually hard for me to tell when there’s something ’wrong’ with me, or perhaps, ‘more wrong’. I try to make sure that there are empirically valid symptoms to lead me to go to my primary care doctor, but when you’re body seems to be telling you something is wrong with it on a constant basis, it’s hard to keep track.
So yeah, I know, tl:dr
Oddly enough, in some sad internet way, I feel like I’m coming out of some kind of closet.
I am, to some extent, opiate tolerant.
Over the past few months I’ve been able to cut back on use of pain killers drastically. Since around March I’ve gone from 900mg of Hyrdocodone a month (wow, I never did the math on that before) to a 175mg a month (in conjunction with Tramadol ER). However, a majority of the difference has been spent tolerating the experienced level of pain better, not in actually reducing the level to any substantial degree.
When I want/need to have a specifically good day, I have to expend considerable resources in order to do so. I hoard my meager supply of pain killers now, and being opiate tolerant, they certainly don’t get me as far as they use to: for example my current supply is sufficient to insure, roughly, 3 full good days, or 6 good evenings, a month. The acceptable level of quality for a ‘good day’ has also changed. I’m simply not getting the mileage out of my medication like I use to.
I’m rationing my quality of life.
Something has to give, this is not sustainable. The answer is most certainly not returning to a higher allotment of painkillers a month, the law of diminishing returns is in full effect here, and it will only get worse from here. I need to come up with an actionable plan.