A New & Terrible Fibro Symptom 

Okay, maybe it might not sound so terrible when you put it on the list of all myother fibro symptoms but since it’s new I have to whine about it. 

My freaking mouth! My teeth and mouth and jaw and my stupid tongue too. I’ve had issues with my tongue since I was a kid. I didn’t understand why it looked like it had scars on it when I was young. It wasn’t until I was pregnant with the boy that my fabulous Dr. Macaroni told me I had geographic tongue. Now I had grown up having an annual dental check up my entire life, only had one filling, had wisdom teeth removed- and no one had ever told me that! But it made sense – I periodically seem to lose my tastebuds, my tongue looks like a road map and most recently my tongue is super sensitive to spice, heat, etc.  

But since I’ve gone off the morphine my teeth, my mouth and my jaw are aching so bad! I don’t think it’s an infected tooth – it doesn’t feel like that – it feel like every nerve in my mouth is exposed and raw. It’s so bad that my sleep has gotten even worse – I’m sleeping about 2 to 3 hours at a time and then my mouth pain wakes me up! What the cuss?! (Or how about – what the cuspid?! 😉) It’s quite literally a pain in the mouth. Thankfully I’m going to the doctor on Friday. Hopefully this will calm the heck down so I can get some sleep!  (This post was written at 7am after about an hour of sleep since 4pm the day before – so if it doesn’t make sense – well screw it) 

On Being A Drug Addict

I have fibromyalgia. I have some other things that have come along with it, but fibro is the main problem. This is not a new story. I’ve talked and written about my journey many times. I’ve talked about how I had a whole different life four years ago. How a persistent, deep, burning pain started in my abdomen that no doctor – and I have had many doctors – could diagnose. How that pain started in one small area in my guts and over the course of a month radiated out to the rest of my body. How I have had almost every test known to mankind and have tried almost every treatment. How I’ve changed my diet, what chemicals I’m exposed to, what type of shoes and clothes I wear and the way I move my body. How I don’t work any more, sometimes I sleep alot and sometimes I can’t sleep at all. Some days I can take the dog for a walk around the block, and other days I feel like I’ve run a marathon just emptying the dishwasher. How sometimes my skin feels like it’s on fire and the slightest touch makes me wince and retreat and how other times I need a deep massage just to feel okay for an hour or two. How if I sit too long in the wrong position my feet go to sleep, how sometimes my hands are numb and tingly, how my mouth is so sensitive now that even pepper can sting or burn (and this is a girl who grew up in Central California where Mexican food is the main food group!). How I walk with a cane now because my vertigo is so bad – and that also means I don’t drive any more. How I’m forgetful and I swear I’m losing my hearing – but maybe that’s just old age. How some days are awful, and other days I just call unpleasant. I wake up with a migraine several times a month – sometimes there’s a reason (weather, hormones, sleep, etc) sometimes there isn’t – I know, I’ve had to track this stuff. I’ve tracked my sleep, my migraines, my regular headaches, my diet, my hormones, my exercise, my pain, my blood pressure, my bathroom activity, how much water I’ve drank, the weather and what the dog eats. Shockingly, not that last one. But the most important thing I track is when I take my meds and how many I take.

That med thing – that has been an issue from day one. There is so much medication out in the world and some things have multiple uses and other things have specific uses. You can’t take some if you take others and you can’t take others if you take some. Because I have migraines I can’t take a certain type of birth control or my brain will bleed. If I take one type of medication with a different one, I have a high chance for a stroke. And oh yeah, I’ve found out I’m allergic or sensitive to all sorts of meds. One made me break out in hives so badly last October that I still have the scars and a few itchy spots today in May. Another makes me break out in a rash and breath heavy – not good. One makes me sick to my stomach and throw up all night – not so good either. We’ve yet to find a blood pressure medicine that doesn’t make me break out into a rash. So it feels like the medication I’ve been on has been a constantly moving target. One thing for my migraines, one thing for inflammation, three things for the fibro, one thing for stomach issues, one thing for my anemia, vitamin D because I can never seem to get enough living here (that was not a problem in California) even when I’m taking high levels of it, one thing for the anxiety attacks that started happening after this began, one thing for depression because – well, let’s be real, I don’t think I was that emotionally stable BEFORE all this began. And two very potent opioid painkillers.

The funny thing about that name “painkiller” is that if you have chronic pain it doesn’t kill your pain at all. Yes, it may dampen it some, but “kill it” implies that it’s dead and does not come back to life. Maybe a better name for them is “pain walkers” or “pain zombie makers”  or possibly “pain distractors” would be best. Because the pain is still there – just lurking about, right below the surface, ready to pounce as soon as that wishful thinking painkiller stops doing it’s job.

When the pain first began, I took the meds without much question. The doctor said these will help and they did – for a time. But the worst thing about these would-be-killers of pain is that the longer you take them the less they work and the more you need – but the more you take, the more likely you’ll kill yourself. And hey, that’s just not so good. If Prince accidentally overdosed – and I don’t know if he did or not – but if he did, I understand it. I understand hurting so dreadfully and just wanting it to be a tiny bit better so you can get some relief or sleep, even if it’s just for an hour. I know, without having any scientific data to back it up, that this has happened to so many people. They have some type of chronic pain – back or leg or hip or, like me, whole body and they’ve taken one pill too many, too soon and never woke up. Maybe they lost track or maybe they didn’t, there are times you just never know.

Because of Prince and politics, medication use in the US has been in the news a lot lately. And what you most often hear about are the people who are taking pain meds not because of chronic pain but because of the pain from an injury or short-lived pain. They took the pain meds and instead of dulling the pain, the medication dulls their senses and gives them a short term high.   And what’s true for those of us who are legitimately in pain is true for those who just want to get high – you have to take more and more to make it work, and eventually – because they are chasing that ever-elusive high – they either overdose or go on to more horrible things like heroine – and then that bitch is never off their back. (Honestly, stick to pot, kids, it’s far more enjoyable.)

I wanted to share that there are different types of drug taking stories out in the world and it seems easier for the news to jump to self-prescribers rather than those of us under medical care. And that may be because no one really knows what to do with us. There are no good answers for chronic pain in this world where we have so many different pills we could build a city of skyscrapers with them. The one thing that may actually help is marijuana but it remains illegal even for medical purposes in the majority of states – including the one I live in now. And because it is illegal in a majority of places there is appallingly little data on the subject.

Last year I talked to my doctor about going off the two opioids I’ve been on. One is an extended release medication and the other is for the acute pain (another word I find hilarious – acute. Please. Aawful would be more accurate.) I’ve known the risks of them from the beginning but when you are dealing with pain you really don’t care, you just want something to relieve it. And even though I had always thought I was tough about pain – listen, if you know me, you know I had three natural childbirths – as an all natural, no drugs and I nursed those babies for well over a year – during which time I’d rarely take more than an advil. Tough girl jumped straight out the window and ran down the street and left hurting scared wimp in her place to deal with the all-over, constant body pain. But the pills just weren’t working anymore. Or at least it didn’t seem like they were. I was still having pain every day, almost all the time and I’m the type of person who knows when to call the game. I’m not a “narrow path Bernie” here – facts are facts and if something isn’t adding up, well, it’s time to try something new. And it’s been four years. And even on the meds my life is summed up in that first paragraph – it just is. On top of everything, some of the symptoms I’ve been having could be attributed to the medication that’s supposed to be helping me. There’s a reason Mary Poppins said to take your medicine with a spoonful of sugar – because otherwise it sucks. The side effects to the medicine that I’m taking for pain can actually make my illness worse … okay. Awesome.

Let me pause for a commercial break about my primary doctor here – he’s been all in for me. He’s suggested pretty much everything we could try, he tells me the benefits and the risks and helps guide me into a decision. He has sent me to every specialist and made sure I’ve had two other opinions besides his own. I just want to make it clear – he is doing his job. He’s not just handing out medication to me like candy. He knows all the meds I’m taking or anything that’s been prescribed by other specialists. He was definitely in favor of me going off the opioids to see what we were dealing without the meds, and suggested I slowly wean off of the medicine.

I started gradually decreasing my extended release meds at the end of November and three weeks ago I had to make the final plunge and go off of it completely.

I’m not going to lie – it sucked. I’m sorry, let me say SUCKED in capital letters so you understand I’m yelling. Even though I had gone as far down as I could beforehand, going off completely was misery. And there were several times I thought I wasn’t going to make it and almost gave up. But once I had gone through even a little bit of suffering the idea of having to go through it all over again at some point would stop me cold and helped propel me through. All of my regular symptoms were heightened. If I’m normally at a 7 or 8 on the pain scale, I was pushing a good 11. Even my hair felt like it had the flu. I couldn’t sleep, I’d roll around and thrash in pain. My stomach started acting up almost immediately. My internal thermometer was broken, hot, cold, hot, cold again. I would alternatively want to curl up into the smallest ball I could make and then want to stretch out every inch of my body. I was short of breath, having panic attacks and weepy as could be – I was either crying over a baby on Chicago PD or because I was watching animal videos or because as loathsome as all of this is for me – can you imagine how hard it is on my poor, long-suffering family? It seemed like all my internal systems were shutting down to reboot my hard drive. But the reboot was taking far longer than I expected. I have no other good explanatory words to use other than it sucked. And even though now, every day is a little better than the day before, I’m certainly not at the point I was three weeks ago while I was still on the medication – so I just have to wait and see if this is my new normal or if I’ll continue to get a little better or what. I honestly don’t know what to expect.

And let’s not forget, I still have another med to stop using which will probably take at least six months to wean down, just like the first one did. 2016 – the year of the withdrawal. Great job 2016, you are an ass hat. But by having a really crappy 2016, I will no longer be dependant on the pain medication and then 2017 can be something else – dealing with this in a different way and there’s something extremely freeing in that, even if it’s also quite scary.

I wrote this today for a few reasons – first and foremost, it’s Fibromyalgia Awareness Day. And bringing any kind of light or voice to that is important so that maybe some day there will be a better answer than the none we have now. Second, this is probably the first time in the last three weeks I’ve been able to keep much of a thought in my head, let alone type it out on paper. I did most of this typing from my bed, but, hey, at least I was able to type. And third, I hope that I’ve given any person that reads this an alternative perspective on what being a drug addict looks like – 42 year old housewife (this implies I clean house, I don’t, so maybe just wife), mother, sister, daughter, aunt, friend, knitter, plant killer, sick girl who could use a smidge more understanding in the world and a whole lot less judgement and condemnation.