Running with Lyme Disease

running with lyme disease
This is me on the last day I ran before making a deal with my acupuncturist to take a break.

Lyme disease sucks. One of the most frustrating things about Lyme disease in general, and perhaps more so for runners, is the conflicting advice offered by everyone from MDs to herbalists to bloggers. If you’re running with Lyme disease, get ready for an onslaught of “STOP IT RIGHT NOW” from the peanut gallery, combined with other, softer voices that tell you to continue to do what you love. I’ve only been diagnosed with Lyme disease for a couple months, and I’ve already heard more advice (welcome and unwelcome) than I can manage.

All I can speak of is my personal experience. One of my worst, strongest symptoms of Lyme disease is cognitive deficiency. On days when I was able (as in, not exhausted or in too much pain), running literally saved my life. Running became my only outlet for relief. The increased circulation, the endorphins, the outdoor air– I’m sure all these things and more contributed to my improved ability to think on the days I ran. Unfortunately, like many people running with Lyme disease, I hit a point where my physical symptoms became too severe to allow me to run. Reduced mileage wasn’t enough.

Taking a Break from Running

I’m currently in the midst of a break from running. It sucks. A lot. But the muscle spasms in my legs– and I mean every damn muscle from ankle to hip– became so severe that I would wake up in the middle of the night unable to stand up. The pain was incredible. Because the lateral thigh muscles spasmed the hardest, my kneecaps began to track laterally and grind against my femurs. I’m not exaggerating when I say the leg pain became some of the worst, possibly the worst pain I’ve ever felt in my life. There was no way I could run anymore when I couldn’t even walk.

Acupuncture

As my legs got worse, I increased my chiropractic treatment frequency, my foam-rolling time, and my stretching routine. Nothing helped. Not magnesium supplements, not a super-clean diet, not topical creams, not ice, not heat. You name it, I tried it. My coworker is a highly experienced massage therapist and referred me to an acupuncturist. I was doubtful, not of acupuncture in general, but of anything helping me. Lyme disease also dishes out a hearty dose of depression and anxiety along with cognitive disfunction, so my cynicism was at an all-time high. I made an acupuncture appointment with little hope for anything more than another pile of confusing advice.

During the initial evaluation, the acupuncturist told me she wasn’t going to target Lyme disease, but rather would target other problems to help with overall health. Her approach made sense to me, and she immediately noted a major deficit in my circulation. I had no doubt she was right, since I’d been spasming so much and my hands and feet are always ice-cold. She told me that, at least for a while, running with Lyme disease should not be on my agenda. I’m not a crier, but I came close to sobbing in front of her. Running was my last grasp on sanity, or at least it felt that way at the time.

I made a deal with her to stop running for a week (not that hard, in some ways, since my leg spasms were so severe). She wanted more time, but I only agreed to stop for a week. She explained that acupuncture, like most natural medicine that works with the body, takes time. I was essentially undoing her work if I kept depleting myself by running while in such poor health. I protested a bit more but eventually agreed to work with her twice per week. There was nothing to lose besides a little time and a lot of money. (The money is for a different post, but as anyone with chronic pain or chronic disease knows, it ain’t cheap to survive, let alone thrive.)

Progress

Fast forward to three acupuncture treatments later, and I’m doing better. It’s not just acupuncture– I take more supplements than most people will in a lifetime, wear compression garments, and use epsom salts– but I really feel a difference. It’s not fast, definitely not immediate, but something good is happening. My hands aren’t so cold, and my feet are a little less cold. My spasms decreased to the point that last night, for the first time in weeks, I didn’t wake up in agony or use compression garments in the middle of the night.

Of course my goals are to get extremely healthy, feel great, and beat Lyme disease. At this point, though, I want to get back to running. The reality is, I have to stop for a while so I can start again one day soon. I was well enough yesterday to slowly hike for a couple hours at the national seashore near my house, and that’s a major victory. I want so badly to run again, but I’ve had so many setbacks over the past decade that I’m trying to look at this as just one more temporary speed bump.

My next appointment with the acupuncturist is tomorrow and I actually look forward to it. It’s working, and that’s what matters. Anyway, if you’d like more info on herbal aids for the fight with Lyme, I’ve gotten a ton of help from Stephen Buhner’s book, and his website is archived at this link: Buhner Healing Lyme.

Running Again

I’m sure I’ll run again, and probably sooner than later. Lyme disease is rarely completely curable unless caught immediately, so “running with Lyme disease” is pretty much my new reality. Running with herniated discs, running with dystonia, and running with fibromyalgia have all been my reality, so here’s another one for the list. I’ll get back out there, just not tomorrow. In the meantime, I’m going to walk, hike, and do as much as I can to stay strong and relatively healthy. It’s pretty cool to say I have a good acupuncturist on my side now. I’m cautiously hopeful and wildly dreaming of running again.

Group Running

5k group run
I underestimated the power of a group run. Speedwork together, in the rain, with my back screaming, was somehow still fun.

My back kept me up most of last night. My old acquaintance, radiculopathy, came to visit with a vengeance in my right leg. The pain was both shocking and familiar. At 5 a.m., I decided to hell with it and got up to join a group run.

I only recently started running with a group. For many years, I avoided races and groups because chronic pain dictated when and how I could exercise. Earlier this year, through a combination of several major changes, I started to see real progress. Between medical marijuana, targeted physical therapy, a better understanding of my spinal problems, and a specialized supplement regimen, I’m on the path to rebirth. A couple months ago, I took a chance and joined a women’s running group. I was afraid I wouldn’t be able to keep up and that I’d have a setback. I was afraid I’d lose my new friends before I even really got to know them. But early this morning, I met them in the rain for speedwork.

My back throbbed and I was exhausted, but resting wasn’t helping, so I decided to try to hang with the running group unless my leg dragged. My muscles loosened up during the warmup mile and my leg was tight but functional, so I stayed for the speedwork. I don’t feel so great physically, but emotionally I’m much better than I was pre-run. I haven’t seen 5k numbers like this in too long to remember. Sub-24 is a really big deal for me. Side note: sometimes the best gear is the oldest gear. I ran in my 15ish-year-old rain jacket and stayed impressively dry. When I bought it, I had no idea it would see me through so many years of pain, evolution, and redemption. It’s got a hole in it now, but I’m not giving it up until it rots.

Trail Running and Chronic Pain

trail running chronic pain
Screenshot of my article’s promotion in the Trail Sisters newsletter. More photos available on the Trail Sisters site.

I wrote an article about trail running and chronic pain, and it was recently published by Trail Sisters. It’s an unfortunate reality that so many people can relate to stories about living with chronic pain, and while I’m always excited to get my work published, I’d rather see a day when there’s not much market for writing about chronic pain.

Trail Sisters is a group that promotes women’s inclusion in the trail running community, and I’m excited to be part of their mission. Whether you have fibromyalgia, spinal problems, and/or any other kind of chronic health issues, I believe that getting outdoors and moving your body is key to mental health and stress relief. I don’t always feel up to running, and sometimes my body doesn’t cooperate with my mind, but I never regret trying. Click here to read my article on the Trail Sisters website. 

Gold Medal Book

gold awardHurting Like Hell, Living with Gusto: My Battle with Chronic Pain won gold in the Florida Authors and Publishers President’s Book Award contest! I knew I’d won an award but didn’t know it was gold until the banquet (which I missed because I was traveling for other book events). My medal arrived in the mail yesterday afternoon, along with a nice letter from FAPA’s president. I’m super excited and very grateful for the award.

FAPA gold award
I won gold in the Health & Fitness category!

A few people have asked if my book is a fibromyalgia book, and my answer is both yes and no. First and foremost, the book is my story– the details of my injuries, the backstory surrounding getting hurt, and the ways I’ve tried to deal with medical setbacks and chronic pain while remaining true to myself as an active, athletic human. A fibromyalgia diagnosis is definitely part of the story, and the book probably wouldn’t have happened without this blog. But, like every fibromyalgia sufferer I’ve ever met, my life– medically and in general– is more than a diagnosis, so my book is more than a fibromyalgia book. We are all so much more than the words that may define us to others.

Altra Escalante Running Shoe Review

altra escalante review

I got a long-overdue new pair of running shoes last week and put them to work immediately. The Altra Escalante is one of Altra’s newer designs, and it’s definitely a winner. I look forward to a future version with slight tweaks that will hopefully make a great shoe even better.

Running Performance

Stellar, except for the sizing (see below). I could’ve easily gone several more miles in these awesome shoes if they hadn’t felt too big. The more I ran, the bigger they felt—probably because my feet drifted laterally a bit, which reduced the functional length of my feet within the shoe. Other than that, I loved running in the Escalante. They stayed soft and cushy without being marshmallowy, and the knit upper had just enough support without being structured. I had to retie the laces a few times for optimum fit, which is pretty common for me when I run in brand-new shoes, but once I got settled on the right lacing, I was good to go. I ran with the Escalante on asphalt, concrete, and damp, grassy trails without traction issues, although it’s definitely not a trail shoe (and doesn’t claim to be).

Breathability

I didn’t find the Escalante any better or worse than most running shoes in terms of breathability. I live in Florida and frequently run in jungle-like humidity and extreme heat. There’s no shoe in the world that can keep feet cool and dry in those conditions, and the Escalante is no exception. Sweaty feet are just a fact of life for runners in the deep south.

Midsole

The white foam looked a bit thin when I took the shoes out of the box, but when I put them on, they were extremely soft and cushioned. The bounciness took a few minutes of adjustment since I’m used to firmer shoes, but once I started running, I was hooked. The Escalante is the most comfortably cushioned shoe I’ve ever worn. It feels a little too soft while walking, but it feels like heaven while running. I have sensitive feet that get angry easily, and I have zero complaints about the underfoot feel of the Escalante.

Outsole

The outsole reminds me of an old tennis shoe traction pattern. The rubber is pretty smooth but has deep grooves. It’s highly segmented and leaves a lot of the midsole foam exposed, which helps reduce weight. I’ll update about durability in a month or two.

Appearance

altra escalante review
I really like the way the Escalantes look and feel.

I’m a fan of Altra from way back when they issued their first Intuition that looked somewhat like a medical shoe with moon boot styling. I’ve often felt that I compromised aesthetics for comfort and function. Some of the major brands that’ve been around a lot longer make really good-looking shoes that always tempt me, but Altra consistently wins in the comfort and function categories. “Embrace the space,” as they say. Each time their designs have progressed, I’ve gotten happier and happier with the appearance of their shoes. The Escalante is the nicest looking Altra I’ve owned yet, except for maybe the bright red pair of Superiors that I own and love. I got the gray colorway in the Escalante, and it’s quite subdued without being too dark. 

Sizing

altra escalante running shoe
Surprisingly, there’s way too much room in the front and front/side in my usual size, so I’ll need to go a half size down. This photo was taken after my feet were swollen from running, and the shoes are still too big.

I’m a 9 or 9.5 in every shoe I’ve bought for at least a decade. In Altra, I wear 9 in the Intuition (version 3.5) and 9.5 in the Superior (version 2.0). I bought a 9 in the Escalante and was worried it might be too small based on other reviews of sizing. However, it’s the opposite of what I thought. Immediately after I put them on, there was too much space in the front and side-front of the shoe. I moved my foot around a bit and changed socks, but there still seemed to be too much space. I don’t like tight shoes, so I decided to lace them up and walk around a bit. They seemed good after all, so I wore them for a 5-miler. Unfortunately, by mile 2, it was glaringly obvious that they were too big. I almost tripped a few times because of the excess length. I can’t believe it, but I think I’m going to have to exchange them for an 8.5. My feet always tend to shift laterally in shoes, especially when I run, and that lateral shift made the 9s feel even longer. Really unexpected to need a smaller size, but I have to go with what fits best, regardless of number.

Final Verdict

hurting like hell, living with gusto
Proof that I’ve been an Altra fan for years— check out the Intuition 1.5 on my book cover!

I LOVE the Escalante. It’s my new favorite shoe, except for the sizing. It’s an unstructured, perfectly cushioned, lightweight option for multiple paces and surfaces. I really, really hope the 8.5 fits perfectly so I can run a ton of miles in them. I’ll alternate the Escalante with my old pair of Intuitions (until I get new ones!), and still plan to use the Superior for trail running and the Lone Peak for hiking. Click here to buy the Escalante. 

Book Award

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It’s an honor to win a FAPA award, and I’m humbled and grateful.

I got word this morning that my book won a Florida Authors and Publishers President’s Book Award! There are so many letdowns, rejections, and silences in the publishing industry, and getting a little validation is a really nice feeling. I appreciate everyone’s support along the way.

I had a rough few days and haven’t slept much, so some good news was extra appreciated this morning. Something’s been going on with my low back, and the radiculopathy got way out of control a few nights ago. I’m not sure what’s angered my back this time, but something definitely got it fired up.

The pain and tingling in my legs got so bad that I couldn’t get comfortable in any position. Eventually, out of middle-of-the-night desperation, I took a chance and rotated my torso until I felt and heard a tremendous pop in the upper lumbar area. Even though it was a little scary to twist and crack my spine, the relief was almost instant. I’m still not where I was a week ago, but I was able to run 4 miles this morning and even put in some decent pace on the final mile. I’m sure the morning news that my book is an award-winner helped me speed up a bit on that last mile. Good news helps everything.

I’ll miss the book awards banquet because I’ll be in the northeast for other book-related events. It still seems pretty surreal that I won. Click here if you want to learn more about my book.

Summer Running

trail running
A good trail run is one of my favorite things in the world.

It’s been hot as hell in my part of the world this summer, but I’ve been able to gradually increase my running mileage despite the heat. My longest run this year is 8 miles, which makes me pretty happy considering I wasn’t able to start running again until March of this year after nearly a year off after a disastrous April of last year. I came home from a two weeks of travel and my legs were much tighter than usual and my back was stiff (although it’s always stiff, so that wasn’t new). I thought a run would help loosen me up, but it didn’t at all, and then an awkward bend to pick up my little beagle sent me into severe spasms. Fast forward to now, and with major core and posture work, medical marijuana (a whole other story that I need to write about), and personalized supplements, and 8 miles seems pretty awesome.

My speed isn’t where I want it to be, but I’m trying to stay calm and steady and trust that progress will happen. I’ve already sped up quite a bit in the last month, but I’m also being mindful to avoid common overuse injuries, like stress fractures, so I’m not letting myself do quite as much as I’d like to. I went from running 11-minutes-plus per mile upon my return a few months ago to running sub-10 this month. Both of those are very slow compared to my former self, but I’m still happy with the progress. I’ve done some very short stints in the 7-minutes-per-mile range, which felt great and a little scary. I’m always mindful of my back, which probably makes me tense up, so I’m trying to work on staying calm while speeding up my leg turnover.

trail running
The pitcher plants were in full bloom during my run.

My favorite run of 2018 so far was an 8-miler through the state forest. It was extremely hot and I went through all my water on my FuelBelt by the 2/3 mark, but the peace and scenery were totally worth it. Afterwards, I swam in a cold, clear lake while tiny fish bumped into my legs and I took in the enormity of what my body had accomplished. It was a great day, and I’m so glad to be able to run again.

Breaking Food Rules

I had a really bad day that mostly sucked because something I’d felt a lot of hope about turned out to be nothing. I’m always cautious with my hope, especially about things that seems like long shots anyway, but I guess I was more hopeful than I thought this time, and the letdown was shockingly crushing. It’s just a work thing, not life or death, but sometimes wanting something really bad and working hard for it and then not getting it is devastating. My rational mind says it’s part of a learning process, but that’s easier to say than it is to feel when the letdown is fresh and the pain is raw.

I’m usually not one to eat my feelings, but last night, after a healthy dinner at the local co-op, I eyed a big bag of ranch-flavored tortilla chips. In mild defense of my transgression, the chips were organic (LOL, I know, still fried junk). I decided that if I took a long walk and still wanted them, I’d allow myself to stray from my normally strict diet and indulge a little. The walk didn’t help lift my sadness, and I walked back to the co-op with fifteen minutes to spare before closing and plunked down $2 for the bag of chips. Then, of course, I ate them all. Every single one of them, even though the serving size was for a family.

It was a rare slip for me, and I felt the familiar guilt of eating crap while dealing with chronic health problems, but damn, those chips were good. I tried pouring some in a bowl and eating just that amount, but it wasn’t long before I dumped the whole bag out and feasted. The free-for-all didn’t make the disappointment of the day go away, but I truly enjoyed eating some junk for a change, and that brief feeling of pleasure was a nice distraction.

I worried that I wouldn’t sleep much and would get achy from the processed food, but I ended up sleeping longer (and uninterrupted!) than I have in months. I didn’t even wake up to pee in the middle of the night, which was probably due to the massive salt load I put in my body with my chow fest. And when I woke up this morning, I felt better and less achy than usual.

I’m not advocating a junk food diet, but I think there’s a lesson here for me, and that is to relax and enjoy a treat every now and then. That’s something that can be hard for someone who feels guilt over poor dietary choices, but maybe my thinking should shift to allow more occasional treats. When I woke up this morning, I felt great, ran 4 miles in a thunderstorm, and am way less stiff and sore than usual. Cheers to chips, at least every once in a while.

Inspirational Podcast

restoration row podcast victoria stopp
Not only does the team at Restoration Row produce a podcast, but they also create art. This is the illustration they did for my story!

I recently had the honor of being interviewed for Kaigo Health’s new podcast, Restoration Row. Their CEO, Uzochukwu Chima, and I talked awhile, and then an actress named Megan Dunlop performed a reading from my book. How cool! The book journey has been quite a ride so far.

Restoration Row has some really interesting and inspiring stories, and I highly recommend checking it out on iTunes or Stitcher. Click here for my episode, but definitely check out all the others while you’re there. The talented production crew will upload a new episode often, so check back soon for more.

Book Sale!

hurting like hell, living with gusto
The book is a spinoff of the Fibromyalgia Athlete blog and tells some backstory and a lot more details of my journey with chronic pain.

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.