I got word from my publisher that the Kindle version of my book will be temporarily discounted. Now’s your chance to snag the e-book for less than the price of artisanal coffee!Click here to check it out.
My book, Hurting Like Hell, Living with Gusto: My Battle with Chronic Pain, is helping me spread the word about those of us living with less-than-ideal health. I have no idea where the journey will end, but I’m happy with all the chances I’m getting to advocate for chronic pain patients.
As for my health, I’m having ups and downs as usual, but I keep seeking new information and trying new solutions. I met two awesome chiropractors while I was in metro Atlanta for book tour events, and they gave me invaluable feedback after taking specialized x-rays to analyze my posture. Since meeting with them, I’ve been able to return to running, albeit carefully and not easily. I work hard every day to correct my excessive lumbar lordosis along with the other postural misalignments they showed me on x-ray. Good health is definitely a work in progress, but the work pays off slowly and surely.
I’ve been very busy with the release of my book (yay!) plus continuing to work some healthcare shifts, and the best way to catch up here is a series of random updates. Here they are:
The regenerative medicine doctor is awesome. After several comprehensive blood tests, he settled on a supplement regimen to help me restore some of my health. Based on the results of my blood work (and OMG it was a TON of blood work– never want to do that again), I’m taking more than a dozen supplements twice a day to address things like low testosterone, gut yeast, and inflammation. All of the supplements are purified and/or hypoallergenic. Some of the supplements I take are fish oil, magnesium, turmeric, DHEA, and an interesting little combo called “cognitive aminos.” I feel much better in general, have less anxiety, and have pretty much gotten used to swallowing a zillion capsules a day. All of this, of course, comes at a steep financial price and is NOT covered by my extremely expensive health insurance policy.
I’m midway through Class IV laser treatments on my back. It, too is expensive and not covered by insurance, but it’s really helping. Almost all of the referred pain is gone from my butt, and there’s much less referred pain in my groin and abdomen. I’m still having a hell of a time when I lie down, and I’m losing my mind not being able to work out as much as I want, but the lack of butt pain is miraculous.
Despite trying not to, I still have to take occasional prescription meds. Two nights ago, I took one muscle relaxer because it was 3 a.m. and I was in misery. I don’t even think it did anything clinically except knock me out, but it was nice to have lights out, if only for a few hours.
I started the first round of paperwork to get medical marijuana for muscle spasms. It is an absolutely ridiculous process and it, too, will not be covered by insurance– assuming I’m approved, which is a big assumption. Soap box– I could go get a prescription for something a lot stronger, a lot more addictive, and a lot heavier on the side effects tomorrow and fill it the same day. There’s something very, very wrong with that.
I’m able to squat again! That probably sounds like a weird thing to celebrate, but I’m absolutely ecstatic. The recovery from my back pain/sacroiliac joint dysfunction has been long and complicated. I still believe that exercise with an emphasis on functional movement is the closest thing to a cure. I stick to my core workout like a religion. That said, it’s a tough road and sometimes I’m exhausted from the dedication it takes to heal myself. My three major holdouts in the battle against back pain have been sleeping, sitting, and squatting.
Sleeping is a night-by-night ordeal. Sometimes I can get comfortable and sleep 3 or 4 hours without even changing positions. Other times I spend almost all night turning, getting up to stretch, stacking and re-stacking pillows under my legs, and generally feeling like shit. Overall, my sleep situation is vastly improved, but if my SI joints are misaligned and put pressure on a nerve or two, I have a miserable night.
Sitting, too, is much improved, although I still can’t tolerate a soft surface like a couch or recliner. I do a lot of computer work while sitting on a wooden piano bench and am grateful I can sit half an hour on my butt. There was a time, not that long ago, when half a minute was torture.
Squatting is a bigger deal than I first realized. For starters, picking anything up with good body mechanics almost always requires squatting, especially if something heavy needs lifting. Petting small dogs requires squatting. Tying shoes requires squatting. You get the idea. I’ve made several adaptations, including training my puppy to get on a chair so I can pet her without squatting (no kidding!), but of course I want to be able to squat. My fitness has somewhat plateaued due to the lack of squatting, since lots of major weightlifting and core exercises require a squat.
A few days ago, after trying some new kneeling exercises to open my hips, I decided to advance to a wide-stance squat. I needed to lift a piece of landscaping concrete and didn’t want to ask for help. Living with chronic pain means frequently asking for help, and I hate asking people to do things for me. I took a deep breath and separated my feet well beyond the width of my hips, then squatted slowly. I waited for the usual searing pain to shoot through my right SI and into my right buttock, but all I felt was a slight twinge. I held the squat for a few seconds and got tears in my eyes. That may sound crazy, but anyone who’s had a physical limitation will understand. When that limitation is lifted—even if only partially—it feels like a personal miracle.
I’m very, very careful with my newfound squatting ability. As much as I’d like to do air squats until I drop (seriously, that’s my idea of fun), I’m only doing ten per day until I’m sure my back can handle more. I’m also resisting the urge to add weight to my squats. Just being able to squat is a huge accomplishment and I don’t want to take it for granted and end up hurt worse than ever.
I don’t keep a gratitude journal, although I probably should. If I did, one of the first things on my list this week would be “ability to squat.” Sometimes the simple things really are the best.
Keeping my core muscles strong has been a lifesaver. Not only am I able to run again, but I’ve started sleeping again because I’m not in as much pain when I lie down. My low back and pelvis and hips were in so much pain for more than a year that I was terrified it would become a lifetime issue.
I already deal with chronic pain and felt like I couldn’t stand a new addition to my pain resume’. The core exercises help my pelvis stay in proper alignment, which relieves the once-constant pain in my back and hips. The picture of my notebook shows what a daily core workout looks like for me. I change things up each day but always do the basics.
I’m about to travel to Boston soon, and I’m super excited. I love Boston and will get to spend time with a much-loved friend from college days. However, chronic conditions threaten to put a kink in my travel plans, and I’ve been running around town and spending lots of time on the internet trying to make my travels as smooth as possible.
One of my concerns, secondary to my chronic neck and back pain, is psoriasis. I’ve been dealing with an outbreak of guttate psoriasis for almost two months now, and it’s tedious to say the least. It’s currently under control on my limbs, but my torso is covered in angry red patches. My insurance company—this makes me so freakin’ furious I almost can’t see straight—is attempting to deny coverage for the topical medication my doctor prescribed to rid me of the psoriasis outbreak, so I’m walking around itchy and feeling gross. The medicine would be $800+ if I paid out of pocket, and not only can I not afford that, but I absolutely refuse to pay out of pocket for something insurance should cover. We pay more than $1,000 per month for the married couple’s policy, yet it doesn’t cover the one prescription medication I’ve needed in a long time.
I’m trying to deal with the psoriasis without prescriptions and so far haven’t gotten good results at all. Gluten-free, dairy-free, sugar-free diet—yes. Scent-free hypoallergenic bath soap—yes. While a restrictive, healthy diet and organic soap likely help my overall health, the psoriasis persists. I’m very lucky that it’s only guttate and not a more serious form, but it still sucks. I don’t want to compound the discomfort of travel by itching like hell, but it looks like I may not have a choice.
What really worries me about travel is my insomnia and chronic pain. I still can’t sit on a soft surface, despite experience massive improvement in pelvic stability since dedicating myself to a challenging core workout routine. I’ve even returned to running—a huge, happy milestone—but sitting on a soft surface (like a plane seat) is almost impossible. Something about cushioned seating makes my pelvis shift, which causes instant misery. I plan to stand as much as possible and kneel in my seat if I have too. I’m a small person, so hopefully I can do what I need to do without bothering my fellow travelers. If not, I guess I’ll probably end up inspiring someone’s bitchy Facebook post about a squirming seatmate. Sorry in advance.
I always worry about an impending attack of cervical dystonia, and change is my enemy as far as muscle spasms are concerned. I’m going to try to fit my cervical pillow into my suitcase so at least I’ll have a familiar place to rest my head and neck at night. Flying up the coast and sleeping in an unfamiliar bed worry me, but I refuse to let my sketchy health rule my life.
I bought some homeopathic zinc lozenges today and will use Counter Attack supplements to try to help my body through the germs it’ll encounter in airports and new cities. I also bought some hypoallergenic cleansing wipes and will make sure to scrub my phone with wipes, too. I’m not paranoid, just realistic, and I imagine anyone with chronic pain and/or chronic disease can relate.
I have some great news! I’m able to run again. I’ve actually been running for a couple of weeks, but I waited to share until I was sure I was going to be able to return to running consistently. I took a picture of my watch this morning to help me document my celebration. That’s 40 minutes of running! This is a huge victory for me. I already feel my sanity returning and my thoughts clearing.
In other news, I’m battling hives again. Do any other fibromyalgia patients get unexplained skin issues? I’ve had two punch biopsies (ouch!) over the years. One dermatologist said the hives are an allergic reaction. To what, he didn’t know. The other dermatologist said I have guttate psoriasis. I tend to disbelieve both of them. Either way, my hives itch. They’re currently on my trunk, elbows, wrists, left breast, and right knee pit. Luckily they’re not nearly as bad as they have been in the past, although I wish they’d go away. It’s so much easier to deal with the hives since I’m running again. There’s something about running that makes me feel like I can take on anything.
I’m not sure what my next running goals are. I’m hesitant to make any new goals since I’m still just grateful to be able to get out there and run. The core exercises that I do every day have made a huge difference in my life. I’m convinced that increasing my core strength and stability has helped stabilize my SI joints. The spinal support offered by strong muscles is fantastic. And the proof is in my return to running. Planks suck, but they work. I have to be very careful with my movements to keep my back pain-free, but I’m running again, so I feel pretty damn good.
I felt exhausted yesterday after a two-and-a-half-hour workout that included an hour of very challenging physical therapy for my back and hip. Dealing with chronic pain is a fulltime job. Workouts geared toward rehab aren’t hard like a long run, but they’re very fatiguing and difficult in their own way. When I got home, I felt like I needed a nutritional boost ASAP. I raided the fridge and decided to make miso soup with fresh vegetables.
You can use whatever vegetables you have on hand, and if they’re from an Asian market, even better. I wish I’d had shitake mushrooms, but white button did fine. The one thing I wouldn’t compromise on is organic miso. I’ve read scary things about conventional soy products. This is how I made my miso soup:
1 quart water
1 head broccoli
2 medium carrots
2 large mushrooms
2 large pieces of wakame (sea vegetable)
organic white miso to taste
Chop vegetables while water boils in a pot.
Add carrots to boiling water for a minute or two, then add remaining vegetables.
Use a ladle to remove some of your boiling water into a large glass measuring cup. Once water in cup is hot but not boiling, add miso and whisk until it moves freely.
Boil veggies only a couple of minutes to keep them firm, then remove pot from heat.
Add miso broth back to soup pot and stir.
My brother-in-law loves miso soup and often adds fresh corn, Brussels sprouts, and other goodies. I was fascinated the first time I saw miso soup because it looked like it was alive. When the miso disperses in the warm water, it looks unlike anything else I’ve ever eaten. I’m used to it now, but still enjoy the show when I stir my soup.
I recently read Foundation Training: Redefine Your Core, Conquer Back Pain, and Move with Confidence, and started the basic exercises the next day. While my back pain didn’t magically disappear (of course), I feel stronger and more confident already. I’ve only been doing the exercises for a few days and started a little more conservatively than the book recommends. My body tends to react poorly to new exercises if I start them too intensely.
I enjoyed the philosophy of the book enough to do something I almost never do—order fitness DVDs. The Foundation DVDs have updated exercises and arrived in my mailbox today. I’m very excited to watch them this evening. I don’t see how strengthening the lower back, gaining flexibility, and keeping good posture can do anything but great things for the unwell body.
Fibromyalgia, chronic pain, low back pain, etc. all tend to push western medicine practitioners toward prescribing pills and/or surgery. I don’t want any of those drastic measures. I appreciate an approach that involves self-motivation and control, which is what Foundation training allows. I can do these exercises and give them a shot rather than wallowing in the bottom of a pill bottle. Giving a sense of empowerment to chronic pain patients is priceless.
I highly recommend checking out Foundation Training. It might not be right for you, but it’s worth at least investigating it as an option. Let me know how it goes!
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.
Chronic pain can keep even the most dedicated exercisers from their daily workout. Over the past year, the pain in my back and right hip was so debilitating that I couldn’t get comfortable anywhere. I gave up running (but recently made a comeback!) and weightlifting on top of everything else I’ve given up to fibromyalgia and dystonia over the years. But almost every day, I made a point to get myself out of the house to walk, with the exception of a few days when muscles spasms kept me locked in a fetal ball in the bedroom. My trial and error workouts through fifteen months of low back/hip pain helped me come up with some advice for people who also deal with chronic pain but still want to exercise.
Unless weather-prohibitive, getting outside is often the first step to activity. Chronic pain is depressing and disheartening and can feel like it steals your soul. Stepping or wheeling outside to feel fresh air and hear bird sing is instantly uplifting. Once you’re outside, you’re more likely to at least walk/wheel around the block.
Find Something That Works For You
Maybe you’re a lifelong athlete like me, and “exercise” means soccer, running, or other high-intensity sports. Recognizing that your body no longer cooperates with your mind’s desires is no easy pill to swallow. Find something that works for you. Swimming and water aerobics are usually great workouts for people with chronic pain issues because there’s little impact on the body. While it doesn’t carry the same adrenaline rush of running fast down a hill, walking around your neighborhood can be mentally cleansing and physically uplifting. Just because you can’t do what you used to do doesn’t mean there isn’t something out there that will work for you.
Mind Your Medications
I’ve experienced medication side effects that were worse than the original problem I suffered. Even medications that you might have taken for years can suddenly start reacting differently in your body. Take a few days to list all the medications you take, the time(s) of day you take them, and how they effect your mind and body. You might find that something either doesn’t work for you at all anymore and you need to call your doctor, or that a certain prescription makes you feel exhausted. Once you’re more aware of what you’re taking and what it’s doing to you, it can be easier to decide on a time of day that’s best for activity.
If At First You Don’t Succeed…
Keep trying. Chronic pain is a nasty demon, but some days you might be capable of things that other days just won’t work. I’ve started running again despite feeling for a year that I’d never be able to run a step. I stuck to a strict stretching routine every night, and eventually the flexibility gained in my legs helped me return to running about 20 minutes every other day. That’s nothing compared to the 2+ hours per day I used to run, but it’s empowering to be back in action. I was afraid to hurt myself and took my return very slowly and carefully and definitely got bad results the first few times I tried. But, eventually, I ran for 5 minutes and felt pretty good, then used that short run as a steppingstone.
Flexibility is so important for everybody, but especially for chronic pain patients. Range of motion in joints can be severely limited by tight muscles, and the less you move around, the tighter those muscles become. Many medical conditions contribute to severe muscle spasms (I have cervical dystonia) that can’t be undone, but for the most part, at least some area of your body is probably accessible to stretch. I found that even on my worst days, stretching my hamstrings helped relieve low back pain. You don’t have to do anything drastic—just gentle stretching will help. A physical therapist can be a great resource to set you on a safe path to a more flexible body.
Good luck to you! Chronic pain is awful, but reclaiming your life and moving your body can do worlds of good.
Of course, like all things health-related, ask your healthcare professional before undertaking anything out of the ordinary. Everybody’s medical conditions are different and should be respected as such. Exercise is great medicine, but make sure you get cleared to participate first!