Sciatica Pain and Sleep Positions

bike
New bike!

I’m going through a weird stage with back pain. It’s not new, but it seems especially magnified in recent months. I’m stronger than I have been in a long time, despite being almost completely unable to run. But almost magically (and not in a good way!) when I lie down in bed, the pain starts with a vengeance. I don’t know exactly what’s happening, but even my usual trick of elevating my legs isn’t helping as much as it used to. Something is definitely shifting when I get in bed, and it’s happening no matter what mattress I try— new, old, foam, springs, etc.

I get sciatica-type symptoms that start with a burning/tingling pain in my right butt cheek and trace down my leg to the hamstring, lateral thigh, and sometimes all the way to the heel. Next comes intense pain in the right front hip, and once it starts, it’s very hard to stop it.

I got a new bike— a cruiser with a very stable seat to keep my SI joints from getting angry— and can ride it without aggravating my back, which is awesome. It’s easy on my neck, too, since I sit upright in the seat rather than leaning over to reach the handlebars. I walk 5 or more miles every day, lift light weights, do a core workout like it’s my religion, and row a mile on our awesome Concept2 machine. For these reasons, I’m pretty strong, although I really want to return to more freedom and running. The lack of comfortable sleep position is maddening, and the pain can be crazy-making. Sometimes I change positions for three hours before I can go to sleep, but other times I get lucky and only move around for about an hour before conking out. It’s very frustrating to go to bed exhausted but unable to sleep because of pain. Lately, I sometimes have no pain at all until I lie down, which is quite bizarre.

No matter how long this shit goes on with chronic pain, I’m never able to get to used to it. There’s still some huge part of me that thinks it’s temporary, or maybe fake, despite making some serious strides toward peace with reality. But when I watch soccer on TV, I still feel the field under my cleans, the ball against my feet, and the rush of adrenaline from scoring a goal. I’m not sure that longing to play sports, to compete, to be free, will ever go away.

Cupping for Pain Relief

cupping bruise
It’s like a circular hickey on my calf.

Try to imagine giant leeches sucking your legs for five minutes, and you’ll get the general idea of what goes on during cupping. I tried cupping to help increase circulation and aid healing in my damaged leg muscles, and for a week I sported round bruises on my calves and thighs.

I’m always up for trying a new way to relieve chronic pain, even if the treatment leaves me looking like I was attacked by an octopus. My back and hip are still giving me fits, despite having had some recent good results with specialized physical therapy. I guess this is the nature of fibromyalgia—a few steps forward and at least one step backward.

The actual cupping experience was a lot more painful than I imagined it would be, but after a minute, the pain eased up a bit. I stayed still on a treatment table for five minutes while the cups did their magic, and by the final minute, my legs were still uncomfortable, but not nearly as bad as the first minute.

When the PT opened his case and showed me rows of cups and an apparatus to make them suction to my legs, I knew I was in for a unique experience. I didn’t get the results I’d hoped for—mainly reduced pain—but at least I tried. I’ve heard that some people swear by cupping, but it’s not for me. My favorite healing tool is a lot more soothing—soaking in the hot tub.

Stomach Pain from Prescriptions

two old goats lotion
I’ll stick with nonprescription pain relieving methods. Two Old Goats lotion is great.

I’ve been taking 20mg of piroxicam for a couple of months. The only side effect I’d noticed is sun sensitivity. No matter how much sunscreen I wear, my face always looks a little burned at night if I’ve been outside most of the day. I wasn’t happy about that, but the medicine was helping with my chronic pain and stiffness and I felt like I could deal with the sunburn. But last week, I started having stomach pain.

At first I blamed the stomach pain on a few slipups in my usually perfect diet. I’d allowed a little cheese here and there and eaten some wheat-based crackers and cereal. I’d had peanut butter instead of almond butter on my apple at breakfast, and figured the combination of dietary sins was to blame for my stomach pain.

I cleaned up my diet again, and the stomach pain got worse. A couple of nights ago I couldn’t sleep because I felt like I was hugely bloated and my stomach burned bad. I felt nauseous after eating and my morning chem-free decaf coffee felt like acid in my stomach. I picked up the Walgreens handout that came with the piroxicam, and, like all NSAIDS, can cause major stomach problems.

I decided to stop taking it immediately even though I was fearful of severe muscle spasms returning and chronic pain worsening. The burning in my stomach was too much to ignore, so I also picked up some generic Prevacid at the pharmacy.

I’ve been two days without piroxicam, and so far my muscles aren’t any sorer than usual and my back isn’t aching worse than usual. I managed a 20-minute run and hour-long walk yesterday. My hot tub and a bottle of Two Old Goats lotion are doing the trick so far.

I’m becoming more and more convinced that our western approach to medicine often creates more problems than it solves, especially when dealing with chronic health conditions. It sometimes seems like one pill begets another. We’ve come a long way in medicine, but we still have a long way to go. I’m going to stay off of all prescriptions as long as possible and keep my diet perfect again and see what happens.

Insurance Rip-off

I’m no stranger to the pitfalls of health insurance, but yesterday I had one of the worst experiences yet with my policy. I pay a huge amount of money every month for coverage in exchange for what appeared on paper to be a solid policy as far as health insurance goes. I changed policies within the same company for the new year to avoid a $300 per month increase in monthly fees, and chose a new policy that seemed very similar with a few minor changes like the deductible and out of pocket max. Then I tried to actually use the policy, and what a hell of a rude awakening.

For starters, it only covers one local hospital—not the one five minutes from my house. It also doesn’t cover the orthopedic institute that I’ve been going to for years for my neck and back issues. I was fuming. I’m guilty of not checking the provider directory before enrolling in the policy, but I assumed that since it’s an expensive policy in the same tier as my former policy (platinum) AND it’s with the same company, I’d be fine. Not even close.

I decided to wait until I got home to deal with the particulars and hopefully change the policy while open enrollment is still active. I stopped by Walgreens to pick up my refill of the only prescription I’m routinely taking—Piroxicam—and was told by the pharmacist that my policy doesn’t contract with Walgreens. What? I asked for details. All he knew was that I’d have to contact the company to figure out where I could actually go to get the medication my doctor prescribed. I went from feeling angry to feeling completely enraged. My expensive health insurance had rapidly become a barrier to my good health.

After a lot of phone calls, I was able to have the prescription transferred to CVS and to cancel my policy and activate a new one effective February 1. But if I’d figured out what a rip-off my insurance was after open enrollment closed, I’d have been screwed by that policy for at least six months. In effect, I would’ve been forced to use a hospital system that I don’t ever want to use. Just because a hospital is covered doesn’t mean I should be forced to use it when I need medical care. I’m so disgusted. For-profit companies that we pay huge monthly premiums to should not have a say in where we go for healthcare and medications, especially when the providers we want to use are in our hometown. My new policy will cost almost $300 more per month just so that I can continue to use doctors I’ve known for years. If there’s a word stronger than disgust, I feel it.

The “Unavailable” Specialist

I’ve been waiting on an appointment with a specialist for months, and the week was finally almost here. I hate going to doctors’ offices, and I hate planning my life around appointments. Mostly, I hate not being well. But the reality of not being well means spending a significant amount of time at the mercy of doctors and their scheduling staff. I called to confirm my appointment a week in advance because I’m driving five hours and spending the night in a hotel to see the specialist. The receptionist casually informed me that the doctor would be “unavailable” that day.

Unavailable? I asked her why I hadn’t been notified, and why I had to be the one to confirm the appointment, only to find out it was cancelled. She didn’t give me a decent answer, but said the doctor could see me the following week. I explained that I was coming from out of town, that the hotel was reserved, and I’d already made arrangements with my boss. I might as well have been talking to a toadstool.

I told the receptionist that I’d need to check my calendar and see if I could work something out to change all of my plans and come the following week. She said that was fine, and that the office would be open until 5 p.m. I called back within a few minutes to say yes to the later appointment, and was informed that it’d been given to someone else, and the next available appointment was in mid October. My thought: “Oc-fucking-tober???” My words: “but you guys were the ones who cancelled my appointment—without even telling me—and now I have to wait MONTHS to reschedule it?”

After an absolutely useless and maddening conversation with the receptionist, I asked for her manager. She said the manager was in a meeting, which felt dishonest at best. I asked her if the manager would call me back today, and she said yes. Of course, no one called me.

I understand that life happens. Things come up, and maybe the doctor had to schedule some sort of life-saving surgery for somebody. Or maybe he got a deal on an island vacation. I don’t really care. What I care about is the complete shit for customer service and the lack of decent resolution. At this point, I don’t even have another appointment scheduled because the manager must be on major overtime, as this would be the sixth hour of the meeting she was supposedly running.

It’s inexcusable when people are sick or hurt and doctors and staff act like it’s no big deal to mess around with the schedule and drag out the wait for months. We patients have so little power already. We’re in pain, we’re miserable, we’re frustrated. To have an appointment cancelled is bad enough, but to be made to wait so long after already waiting months is inexcusable. Unfortunately, there’s nothing we can do. If we need a specialist, as I do, there’s nowhere else to go. I have no words for the level of frustration and anger and disgust I feel, and perhaps the worst part is, no one in the doctor’s office seems to care a bit about how their decisions impact patients’ lives.

Caffeine Provokes Fibromyalgia Symptoms

Caffeine, as I’ve suspected for several months, makes my fibromyalgia symptoms much worse. While that revelation kind of sucks, it’s also always nice when something can be easily controlled, like caffeine intake.

I love coffee. As a vegan, I’ve been enjoying soymilk, coconut milk, and almond milk as creamers. I never add sugar or sugar substitutes to my coffee, which makes me even more certain that it’s the caffeine that, even in very small amounts, massively increases my anxiety and provokes muscle spasms.

I kicked caffeine out of my life for a couple of months, then started drinking less than one cup of coffee per morning last week. Within two days, my neck pain was worse and I felt less hopeful. My running improved. Even hills felt like less effort. But the increasing pain and hopelessness were absolutely not worth it. By day five of drinking less than a cup a day, I was in bad shape.

Going cold turkey wasn’t too hard since I’d only been drinking coffee for six days. It wasn’t great fun, but it wasn’t the worst thing to quit. And, on Sunday, I not only ran eight miles at a decent pace, but I also took my paddle board on a two mile journey.

Fibromyalgia is picky. It demands a lot of sacrifice. But if forgoing caffeine allows me to live a more normal life, then I’ll never touch another cup of coffee again.

Goodbye, Lyrica

Lyrica is not the drug for me. I gave it a few months, and after some ups and downs, the bad outweighed the good. I only got to 150 milligrams per day, partly because my rheumatologist is conservative, and partly because I was reticent to take Lyrica in the first place.

Titrating down wasn’t fun, but it wasn’t the worst thing ever. I went through a week where I alternately felt like Lyrica made me wide awake and obsessive or knocked me out. The last two weeks, I’ve been down to one 50mg Lyrica per night, and every time I took it, I started feeling increasingly more like I was losing my mind. And it was that scary kind of mind loss—like the stories you read about where people are going crazy, but they’re still sane enough to know it.

Two nights ago was my last time taking Lyrica because of the unbearable psychological distress combined with a complete lack of effectiveness at relieving my fibromyalgia symptoms. I felt like I’d need a massive dose of Lyrica for it to be effective, but I also felt like I’d lose my mind entirely if I took the necessary dose. My memory had gone to hell, I’m certain my IQ had dropped significantly, and I felt like an addict. But the going crazy thing is what tipped me over.

Insomnia has plagued me for years. Sometimes my body (in whole or part) hurts too much for me to get comfortable in bed. Other times, my mind races and I can’t stop thinking about the herniated discs in my neck. Then I get so mad about not sleeping that the frustration keeps me awake. I was very worried about returning to completely sleepless nights post-Lyrica.

I bought sublingual melatonin at the health food store in hopes of sleeping somewhat normally. It tastes like orange-flavored cough syrup, but it helps some. I’m only trying 1.5 mg per night for now, but they had 10 mg pills. The first night off Lyrica and on melatonin, I didn’t feel crazy at all, and I even slept for 6 hours. The next night, I got less sleep, but I still didn’t feel crazy. And I’m gradually losing the tough case of the stupids that I’d gotten while on Lyrica.

Exercise-wise, my first day off Lyrica started with an hour-long run. My second Lyrica-free day included a 35-minute bike ride in a thunderstorm (fun, really), 15 minutes of modified Crossfit, and 20 minutes of low-intensity weightlifting. My neck has been sore constantly for several days, and my left hip and knee are tender, but nothing’s majorly flared at the moment. The harder I exercise, the better I sleep, no matter what hurts.

I’m continuing with a vegan diet, and am soon going to add yoga to my exercise repertoire because I’m ridiculously inflexible and unable to relax. I’m weening off caffeine, and one of these days I hope to give up tortilla chips and rice crackers.

I’m so tired of being on drugs. Even when they’re legally prescribed, pills make me feel beholden unto a toxic substance, which in turn makes me feel even less in control of my life. Fibromyalgia has already stolen so many of my choices, and drug addiction—albeit legal—is something I’m trying to avoid. And at this point, I think I’ve tried almost every drug anyway, and none of them work for longer than a few weeks. I’m so, so tired of prescription drugs and their side effects.  After years of trying everything else, “vegan exercise fanatic and melatonin user” doesn’t sound so bad.

A Few Thoughts on Lyrica for Fibromyalgia

Three 50mg Lyrica pills per day. And yes, I have weight-lifting calluses on my hands.
Three 50mg Lyrica pills per day. And yes, I have weight-lifting calluses on my hands.

I have a complicated relationship with Lyrica. It has vastly improved my life, but has also turned me into a forgetful, emotionally foggy person. I hate taking medication, and am well aware that oftentimes our over-medicated society is burying itself in toxic pills. But there came a point when it was either live or die, and I decided to take my chances on Lyrica rather than giving up just yet. I’m only taking 150mg per day at this point, but will likely go up on the dosage soon.

What’s Good

I’m sleeping 8+ hours per night for the first time in a few years. I was agonizingly scraping through life on 0-2 hours some nights, and regularly 4 hours of sleep per night.

There’s no denying my psychological connection to fibromyalgia. Pain creates anxiety, and anxiety creates pain. It’s a real bitch. Lyrica definitely whittles away at anxiety.

Initially, as in the first week or so, I had almost no pain anywhere in my body. I slept like a character in a fairytale, and would’ve slept all day if not for needing to do basic things like go to work and be a mother to my dogs.

The debilitating muscle spasms have mostly stopped. My feet no longer cramp and feel like they’re folding in half, and my lower back and quads are mostly fine. My neck range of motion is better, especially when looking up.

I’ve been on it for a little over a month now, and have only had one day of paralyzing, flu-like fatigue.

Strangely, Lyrica seems to help my body respond well to ibuprofen. I try not to take ibuprofen (or any drugs, for that matter) unless I’m really hurting bad, and for years, it was like swallowing nothing. Now, combined with Lyrica, ibuprofen seems to take the edge off the full-body soreness and aches.

Lyrica hasn’t seemed to affect my athletic ability at all. In fact, since I’m hurting so much less, I can do more and not be completely wiped out.

Alcohol usage hasn’t seemed to change the way my body reacts to Lyrica, but I only drink 1-3 beers per week.

What’s Not Good

As far as side effects, other than the forgetfulness and sometimes feeling like I’m looking at life through beer goggles, my appetite is huge. Lyrica is reported to cause weight gain, but for me, it’s just caused a major appetite increase, which of course can lead to weight gain if I don’t practice restraint. Another aspect of the reported weight gain that I suspect is this: since Lyrica cuts down anxiety, I don’t obsess over food as much as I used to, which means I eat a bit more crap now, especially when out with friends.

A lot of the pain came back after two weeks of taking Lyrica. Mainly, my neck pain and spasms have returned, although they’re definitely not as bad as they’ve been in the past.

It’s expensive. Even with insurance and a manufacturer’s discount card, I’m paying $137 for a month’s supply of Lyrica. That number should go down some once my giant prescription deductible is met.

The forgetfulness and fogginess were so bad during my first week on Lyrica that I almost burned my house down. I’d put a pot of dry kidney beans on the stove to par-boil before putting them in the slow-cooker, then immediately forgot what I was doing.

I went outside with my dogs to enjoy a day off work and read in the backyard. After awhile, I started smelling foul smoke. I peaked over the neighbors’ fences to make sure their houses were okay. It wasn’t until I turned and saw white smoke pouring from the doorframe of my own house that I realized what was going on—sort of. Even then, I assumed it was an electrical fire. I ran into the house, fully intending to shut down the circuit breakers and see if the fire was something a household extinguisher could handle. It wasn’t until I saw the pot on the stove billowing smoke that I remembered it. FYI, extremely scorched kidney beans smell worse than a porta-potty. And no, the irony of a drug saving my life and almost killing me in the same week is definitely not lost in my fogginess.