I live with chronic pain and fatigue. I have since I was 9 years old, over 20 years ago. It’s chronic though not consistent in severity, although overall, over the years, it’s degenerative. All the causes, as well as the whole fight to get anything done about it….well, that’s another post. Let’s skip ahead a bit.
I was on Vicodin for a little over a year and a half, until the Dr. who was giving it to me moved out of my insurance network. I never became addicted, since I could take it fairly regularly my body adjusted and I barely even had the sleepy side effect, and I took it on an as-needed, relative-to-what-I-had-to-
I MISS VICODIN.
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I grew up with abuse. I graduated from high school in three years so as to make my escape earlier, only to end up with a freshman roommate with NPD. Before I figured out that you have to break the chains of abuse inside you as well as those around you, I also had a boyfriend who was an emotionally manipulative cheater. Even once my emotional life became healthy, my circumstances weren’t necessarily so. I have found myself in a position of responsibility regarding someone with BPD. I’ve lived on the razor edge of poverty. I live with being the physically disabled mommy of a neuro-disabled son that we were told not to expect to survive. Just a….selection….you know.
There are certainly worse things that can happen to a person, but that hasn’t stopped me from earning a few PhDs from the School of Hard Knocks.
Through all this, I have never once been on a “head-med”. I’ve never even had professional counseling. I have been doing it for myself my whole life, and it works for me. Sometimes I wonder HOW it works for me, but it does. I’ll admit, I’m somewhat proud of that fact. A little self-moderated PTSD and BDD, but aside from that, my psychiatric profile is remarkably stable. I’ll confess, I’m also happy about it — about not needing any “head-meds”. Oh, don’t get me wrong, I’m not especially prejudiced against them, or those that take them. I do think too often then are used inappropriately in one sense or another (again, that’s another post), but I also know a ton of people who have valid chemical and/or circumstantial need for them, that they work well for. I’ve got no problem with that. That doesn’t mean I don’t prefer NOT needing them, though, especially when it comes to myself (and my kid, but yet again, that’s fodder for another post). If it tells you anything, teetotalling isn’t a choice for me — not with a history of alcoholism in the family, a circulatory disorder, the alcohol tolerance of a fieldmouse and plenty of potential drug interactions — but it’s a choice I’d probably make anyway. Caffeine aside, I’m not a big fan of altering brain chemistry just to get more….or less….out of a situation. I rather do the same thing naturally, with full self-awareness and self-control. An uncommon side effect of my upbringing, perhaps.
Eniways, so it goes. I’ve been offered anti-depressives and anti-anxiety meds in the past, at likely times, but I’ve always turned them down. I was the woman filling out the weekly parent depression questionnaire at the NICU with things like, “Well, you didn’t really expect me to feel GREAT right now, did you? I mean, that would be a bit….off.”
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The issue of whether or not to have an epidural during labor is a somewhat controversial, fairly loaded one. When I was going to have Ash, however, the decision was taken out of my hands. It was deemed medically necessary for me to have one, so as to reduce the strain on my heart condition. Would I have been strong enough to push through (no pun intended) without one, for the sake of just-in-case-it-would-be-for-the-best? I have no idea, but it was a moot point. Apparently, my body required one, to have a shot at functioning at all.
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Bear with me. This is where the three bits and bobs above, all come together.
Seeing as how we were about to fall into a gap in our medial insurance again (because if Steffan makes $12 too much a month for state aid insurance and food stamps and full disability payments for Ash, it totally balances out not receiving the thousands of dollars’ difference in our medical-debt-drowned-budget, right?) — and remember, the last time this happened, just shy of a year ago, is when my gallbladder decided to go kerplodie, so let’s all pray, please — Steffan and I managed to sneak one last Dr’s appointment for each of us in, on the last day of August. The hope was that we’d be able to both get and pick up a new asthma inhaler Rx for him, and new birth control and pain-killer Rx’s for me, that afternoon. Weeeeelllll Steffan got his Rx….he’s got one fresh inhaler in hand, and so long as we get some sort of insurance back so he gets the Rx coverage to pick up more, he’s got more refills on it for the next year’s time than he should, hopefully, need. I have a year’s worth of refills on my birth control, although since I was halfway through a pill-pack at the time, they wouldn’t give me another one, so there will probably be at least a few months before I have the insurance to pick any up affordably. I’m not looking forward to that, since for me, birth control pills aren’t just about being extra, extra careful. Without them I develop ovarian cysts, alternating with having them burst, every month.
But then we get to the fun part — my pain killers. I did not walk away with an Rx for Vicodin. I didn’t even walk away with an Rx for Diclofenac (my arthritis medicine, which is ibuprofen based, the reason — because of conflicts — I don’t also have an as-needed med specifically for migraines), plus Tylenol3 (codeine-spiked, prescription-strength acetaminophen), as had been fairly standard, if only vaguely helpful, in more recent years. I wasn’t even given bloody 800mg ibuprofen, which I laughed desperately at when it was originally “tested” for me, since I can get THAT much into me by taking four of the over-the-counter ones.
Nope. There were a number of arguments featuring attempted logic like:
Her: People are not meant to be on pain-killers long-term.
Me: People are not meant to have their joints in the wrong places. People are not, in fact, really MEANT to have any number of issues which result in plenty of people out there besides me, being prescribed reasonably strong pain killers on a regular basis.
Her: If you take any given narc for too long, it stops taking care of your pain.
Me: If I’m not taking the narc at all, it doesn’t even start taking care of my pain. There are other narcs out there besides Vicodin which have been proven as options for me, should occasions arise when I need some short-term, heavy-duty pain-killing distinct from the effects — dwindling or otherwise — of Vicodin. In the meantime, I have a history with Vicodin which proves substantial results with next to no side effects and a resistance to its addictive properties, when taken on a regular basis, over a period of at least two years at a stretch. I wouldn’t know if I could go for longer on it, because that’s about when it was cut off, and it’s been around two years, I think, since I’ve gotten it back…
Her: There has to be a more direct way to address the problem.
Me: You mean like going to the Pain Clinic, which I’ve been waiting for my referral for an appointment to go through for, for over two years? Or like having things like regular massage therapy, custom braces, accessibility tools and mobility aids, to reduce the accumulating strain, that myself and my doctors have yet to convince insurance to cover? Or perhaps you mean addressing some of the physical conditions even more directly, something one of the top specialists in the country, a veritable House MD of his genre of medicine, threw his hands in the air and declared beyond his vision to do anything about, after he ran out of tests and scans and whatnot. And by the way, the things which he says are impossible to do, are basically what I’ll need done if I continue on this track, especially if I continue adding strain to my structurally unsound joints by continuing to gain weight now that having a child changed my metabolism, because I am in too much pain to exercise, and too physically unsupported to exercise THROUGH more of the pain.
You get the idea.
No, despite all, my Dr. (who until now had proven one of the more useful ones) would not give me any sort of (pre-established-in-terms-of-me or otherwise) drug designed as a pain killer, for my pain. She gave me Cymbalta. That’s an anti-depressive. I’ve never taken it before. I’ve never taken anything like it before. Did I mention it’s an anti-depressive? I am diagnosed with all sorts of things that result in pain. I’m not diagnosed with clinical depression.
No, she wasn’t doing this because she suddenly decided it was all in my head, or because she thought it would be helpful to help me feel happier about the pain which wasn’t being treated, and its compounding impact on my quality of life. To be fair, there’s some medical precedent for Cymbalta being prescribed specifically for pain associated with Fibromyalgia and Osteo-muscular related pains, which certainly are among my major issues. To be fair to the immediate reactions of Steffan and myself, she also didn’t get into any of that. What she said was, “Well, there’s been some evidence that a side effect of taking Cymbalta for depression is that there can be a reduction in fibro pain, though they don’t understand why, and since taking Vicodin only gave you a 50% improvement, maybe we should experiment with this.” Note that she only mentioned fibro pain. I have fibro, and pain from fibro. I also have pain from a number things that are not fibro. Things which have nothing to do with the rhaumatological system. Things which would therefore, according to only this information, not be addressed in the slightest by this treatment. And by the way, “experimenting” with my physical and emotional capacity to function, when it isn’t necessary, and when I have a special needs child that I am the primary caretaker for, does not strike me as material for a casual proposal. Oh yes, this all sounded PERFECTLY RATIONAL.
Option 1) I’ve taken the drug before. I didn’t get addicted. It made a big difference in treating what it was designed to treat, which is something I have a diagnosis for. I had next to no side effects.
Option 2) I’ve never taken the drug before, or anything like it. It’s designed to correct a particular kind of chemical imbalance in the brain, which I don’t actually have, so we really don’t know what it might do to me. The goal is treatment VIA one of many potential side effects, some of which are quite nasty and dangerous. We don’t know what it might do to me, and we don’t know if it will do what we hope. Oh yes, it also conflicts with a good lot of pain-killing options, from my dwindling stash of more effective things, or even the standard stuff — and, if it works, it probably won’t work for a month. So, that means basically no pain-killing AT ALL for a month. Right as we’re getting to the season where I start hurting even more.
We are less than thrilled.
In fact, ironically enough, it made us feel a bit depressed.
But so it goes. Things happen to be fairly depressing right now, for other reasons, but I was getting along without pharmaceutical aid. But now, for lack of options, I’m going to be going on an anti-depressant anyway….for pain.
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Let’s hope it turns out that the fibro’s a bigger part of your pain than perhaps realized, and that the Cymbalta actually works for you in that aspect? I guess? Oy ve. I swear, the higher the degree, the less common sense
naelany´s last [type] ..In Public, I Call Her Sister – chapter 50
I have osetoarthritis (degenerative joint disease) and fibromyalgia. Cymbalta did SHIT for me. Yes, there’s been some success for some patients.
A doctor told me they try Cymbalta to see if there’s relief because depression can have physical symptoms, such as muscle pain and fatigue. If it’s relieved by Cymbalta, it oculd be the person was depressed after all. So they go that route, and they can’t prescribe pain meds while the patient is on Cymbalta b/c then they can’t tell which is dong the trick. Sadly, your doctor is playing this game with you and it actually ticks me off. This isn’t a NEW thing for you. This is 20+ years of dealing with chronic pain. this isn’t DEPRESSION.
Sheet, I’ve been depressed before–but that was because I was a 20 something who couldn’t pick up my toddler because I’d fall over and squash him. I was depressed because I was a 20 something with a special needs toddler who needed his mommy to tuck him in but I couldn’t bend over his bed to give a kiss on the forehead. It’s not depression causing the pain but the pain causing the depression–sometimes. I have since reached my “acceptance” point and the depression has passed although I still have moments when I get really ticked off about it all LOL
I was on oxycodone shortly before my cancer treatments started and for two years after treatment stopped the first time. I didn’t get “addicted”.. although perhaps my body did become dependent on them. But I only took them “as needed”. I had a script given to me in Aug 2010… of 90 pills. I still have 20 of them. That outta tell someone I”m not addicted to them. But my dr. has decided that the long-term use will fry my opiate receptors making the pain killers (of any kind) not work (which biologically speaking is sound judgement) so, give me an opiate blocker to go with. He was training a student doctor last month and we were adjusting my Lyrica/Savella meds (he gives me samples of the Savella since insurance wouldn’t cover that), and she asked “But, her nurses notes show she steadily has pain in the level 4-5 range in mid-afternoon, and even higher in the mornings, what does she do for the breakthrough pain?” And the doc replies: “She shouldn’t have any.” LOL… but I DO! Ugh. One more visit and he’ll give them back to me if I continue to have breakthrough pain.
Take them. See if they help. If they don’t, and you can see them again, scream and yell until they give you a script for WHAT WORKS. Sheesh. We know our bodies by now. 15 minutes every so often does not make them an expert on OUR bodies.
I found your blog through the #spoonie tag on Twitter, and I’m bookmarking it so I can come back and see how the Cymbalta works out for you. We’re coming from pretty similar places — I’m 30 and dealing with chronic pain from a lovely combination of health issues that make even the most House-like doctors throw up their hands — and my now-ex rheumatologist tried to push Cymbalta on me last month. Unfortunately the rage about that didn’t build until after I’d left her office, so I missed a perfect opportunity to tell her to go screw herself.
I’ve been on increasing dosages of Tramadol for the last few years, but as with all pain meds, it’s starting to lose its potency, leaving me with a great deal of break-through pain. The last few years I’ve also cleaned up my diet, along with all my household and beauty supplies, to be as unprocessed, organic, and natural as possible, in an effort to keep the inflammation in my body (most of my issues are autoimmune related) as under control as possible. It’s made more of a difference than I would have believed before I started, so I starting thinking about how the one last *highly* processed thing I’m putting in, on, or near my body are all the medications I’m taking.
So after a great deal of research online, I decided to approach my rheumatologist — who up to that point had been the best of the 25+ doctors I’ve seen in the last 8 years with my declining health — about getting a recommendation to use medical marijuana. I’m a California resident, talking to a California doctor — all 100% legal, and has been since the mid 90s. Tramadol isn’t working for me anymore, and I’m worried about switching to yet another processed opioid, only to have that fail on me eventually. I want to try something unprocessed. I’ve never been a recreational pot user, never even had a puff. Never been in any trouble with the law, never had any addiction issues, never abused any of the pain killers I’ve been on for the last 8 years, and have specifically tried to avoid anything that looks like “drug seeking behavior”. I’ve researched online, I know the preferred methods for chronic pain patients — vaporizing and ingesting, smoking has its own dangers — and am equipped to use medical marijuana in a responsible manner.
So I should be the ideal candidate for a measly little letter from the rheumatologist who has been seeing me for 3 years, just saying that she’s a licensed California doctor, and she approves my use of medical marijuana. That’s all it would take. It’s been legal for 15 years, shouldn’t be an issue, right?
Wrong. She told me she doesn’t know enough about it to feel comfortable signing that kind of letter. Fine, fair enough. Sure, medical marijuana has been a reality in California for 15 years, and I’m sure as a rheumatologist I can’t be the first person to bring it up with her, but whatever, fine. Then she says she doesn’t approve of it, quote: “because of the potential for abuse.” Lucky for her, the full irony of that statement didn’t hit me until the drive home. Potential for abuse? I’ve been on opioids for the last 8 years and haven’t abused those!
That’s when she brings up Cymbalta. Like you, I’ve avoided any and all “head meds”. I’m generally a pretty happy person, despite the pain, and when I am depressed it’s because I spent my 20s disabled! Being in pain constantly, endlessly, and doctors unable to even say why, that is depressing. But I don’t need or want to mess with my brain chemistry, especially not with something processed, packaged, copyrighted, and advertised on prime-time TV commercials.
Cymbalta works for fibromyalgia and osteoarthritis pain, my rheumatologist tells me. Well that’s great, but we’ve definitively ruled out both fibro and osteoarthritis as the cause of my pain. And MS, Lupus, RA, ankylosing spondylitis, and a list as long as my arm, but again: whatever. Okay I say, can I take it as-needed, like I do with Tramadol? No, she says, it must be a consistent level in your blood, no matter how bad the pain is. Can I keep taking Tramadol for break-through pain, then? Nope, in fact I’d have to completely stop taking Tramadol for 10 days before even starting Cymbalta — and then wait a month to see of Cymbalta actually works well for me.
I took the sample boxes she gave me — that should have clued me in right there — and it wasn’t until the drive home that I started going “No wait a minute.” I got home, looked up Cymbalta, and got even angrier. I ended up throwing the whole stupid bag under my sink, and officially “firing” her from my rotation of doctors. I then went and found a doctor who has opted out of the insurance pyramid scheme and works only with medical marijuana patients. GOOD RIDDANCE.
I’m so sick of doctors who neither know nor care what is wrong with my body, trying to stuff BS medications down my throat. If you haven’t yet, you should definitely see the movie “Love And Other Drugs” — it’ll give you a whole new perspective on the name-brand drugs doctors always seem to have samples of on hand. (And it features Anne Hathaway as a woman with a chronic and degenerative disease, as the romantic interest no less, which was refreshing to see.)
Anyway, I hope the Cymbalta works well for you, or if not that you realize it quickly and are able to find a better doctor. It pisses me off to no end that doctors are able to deny patients the medication that works best for them, simply because other people have abused the same drug. And don’t even get me started on the situation with name-brand drugs. But here’s hoping Cymbalta is better than worthless for you. I’ll be following along eagerly.
So sorry to hear this. There is just nothing worse than pain that won’t go away. It impedes focus on the rest of life no matter how much of a superwoman you are. I’m not an expert in anything, yet, I find it so interesting that there are certain ingrained ideas in society that affect people in a behavioral way. Vicodin has the rep of an addictive pain killer. The end. Yes, obviously there is plenty of support for that. But ultimately, as Heather says, it is your body and you know what is happening. You are an adult and making an informed decision. Frankly, I find that taking away one’s freedom to choose in this kind of scenario is too much interference in someone’s personal life. They do not live in your shoes or experience what you do on a daily basis. It seems absurd to me that you cannot make a decision on your own to relieve your pain. Yes, I understand there are and can be abuses and society must protect others from harm that could potentially occur while people are under the influence of anything but really? We don’t stop people from going to bars and restaurants knowing there can be and is daily abuses of alcohol as well. Sorry, really just ranting now… My opinion is quite clear. I hope you can find a doc who will give you what you need. Sadly though, docs are watched too and if there are a lot of RXs for VIcodin, the doc can be investigated so I would think they are going to protect themselves before their patients – the whole system needs some rethinking!
This is craziness. I can relate to a lot of things, like the surviving abuse and PSTD without needing any “head meds” as you call it. I had an awesome support group in which I worked out my entire life and its course with… so I guess it was a lot like successful free-of-charge therapy. I was really amazed at all the people who thought I should medicate my way to happiness and not bother with the support group, despite my saying that I was pretty sure medication is supposed to compliment the the therapeutic process, not replace it.
I did use anti-anxiety medication earlier this year when life blew up on my and my husband needed part of his skull removed (and some related procedures) while I was dealing with NPD sister on top of the regular madness. I was taking the meds, but I also worked on my coping skills (yay me!). I ended up surviving a strange earthquake scenario (my house is built on sand and water, so it was pretty violent shaking) and a hurricane (we live in a flood zone) without the medication. My coping skills were tested and proven to work, so I never got a refill.
I don’t have chronic pain, but my husband does. I know his medication makes the pain manageable and allows him to function. There is a HUGE difference between medicated him and unmedicated him. From the hassle that we’ve gone through with the insurance company and pharmacy to get his prescription each month, you get to feeling like you are doing something wrong. I don’t know how many times I’ve said “but he had brain surgery and is missing part of his skull” in total exasperation because a pharmacist didn’t want to dispense the medication. And that’s just one piece of his chronic pain puzzle- the most shocking one- yet, he still needs back surgery and his hips replaced!
My NPD sister also has chronic pain and has been on many heavy duty pain meds for about 20 years now (morphine, oxycontin, percocet, vicodin, muscle relaxers, et al and occasionally she’s had RXs of all at the same time). I’ve seen her go through 90 percocet in a week and basically self-medicate stereo-typically while being non-compliant with other therapies and treatments. She significantly less severe than my husband but has managed to be prescribed just about every pain med you can imagine. It’s is pretty much killing her and I would classify her as addicted. She’s every doctor’s nightmare because what do you do? Twenty years is a long time, but they’ve been handing her the drugs that are killing her knowing she’s non-compliant with other therapies, knowing she isn’t taking the meds as prescribed and knowing she isn’t caring for her emotional and physical over all health.
She recently met with a pain management doctor that medicaid covered (up until now the family has been paying for her visits to an out of state pain doctor, which cost a small fortune every month). The doctor told her what everyone already knew: the medication is killing her. He came up with a plan to wean her from the bulk of the drugs and wanted to add in new treatments to help manage the pain. In the past 20 years, there have been good advances in non-narcotic therapies for her condition. To her, it was the end of the world. I don’t know if she went back– not supporting her in seeing the out-of-state pain doctor pretty much made her not like me any more, so we don’t talk anymore.
Her liver is breaking down and she’s throwing clots now. I imagine it’s directly or indirectly related via the addicts life-style. She may need her foot amputated because of a clot. Her foot was swollen for two weeks before she saw a doctor. She chose to treat the swelling herself with medication. Rational people understand that not everything can be medicated away and you see a doctor for a reason, especially unexplained swelling. Swelling constricts blood flow which starves tissue and muscles of oxygen, eventually killing it. When you addicted your thought process changes. You don’t see a doctor for this sorta stuff because you are afraid they will stop giving you the medications to which you are addicted. You don’t want to lend any credence to the fact that you appear addicted. So, stupid choices abound.
I intimately understand the argument for not using narcotics long term, but there is a HUGE difference between twenty years of managing moderate chronic pain solely through excessive amounts of medication and two years of a few medications being used exactly as prescribed in compliment to other therapies. And for a condition that has no fix? Well, leaving a patient without any treatment is not medically ethical. It’s also really irresponsible–negligent even– to worry about addiction, then not titrate a patient off medication, but rather cut them off cold turkey. It could very well be that prescribing Cymbalta was a backhanded attempt of reducing withdrawal while hoping to treat what the doctor thought was the larger issue: Fibromyaligia. But if your joints are in the wrong place, well, the Fibromyailgia is just an additional PITA I would imagine. Not to mention there are other non-narcotics for treating that sorta pain.
In short your doctor is an idiot. I think the posters above me are right. Doctors are very worried these days about getting their licenses pulled for over-prescribing. The bad apples have spoiled the bunch and people with valid needs pay a high price for over-zealous prosecutors making a name for themselves. (We have a huge problem with this in our area, but whenever a doctor is charged w/ an offense, our health department steps up to help the patients with a valid need for narcotics) With the problems we’ve run into with my husband, I’m amazed that anyone can abuse the system to get a buzz off of pain pills. Obviously those that misuse the system aren’t the people being having to jump through hoops to get pain medications and I have to wonder why?
I feel a little bad about my Dr. House tweet. *facepalm* In another day or so, I’ll be back to my old self not needing anything more than an ibuprofen… Of course, I was really surprised being given more pain medication because I’m the girl who, for example, has the dentist who said “not everyone needs Novocaine, let’s try drilling in your mouth without!” (btw, never again!) My doctors always seem to have a no pain medication policy, which is okay because I don’t usually have pain. If I did, I would hope that they’d prescribe me medications that were actually helpful and would allow me to function, but I’d also hope for other therapies to reduce my over all need. It sounds like that’s all you are asking for, but can’t get it. And that sucks.
The system is broken and I’m sorry you (and others) have to pay for it. Now if insurance companies would pay for non-medication therapies, maybe this would be less of an issue. It’s a catch-22. Doctors won’t prescribe and insurance companies will only pay for medication therapy. In the end, treatment for none. ugh.
(Sorry about the novel!)
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