Fibromyalgia and Lyme Disease

running with lyme disease
Calling it quits early on a workout if it’s too hot outside is key to managing fibromyalgia, Lyme disease, and babesia. I’m not good at listening to my body. It’s definitely a learned skill.

“Do you still have fibromyalgia now that you have Lyme disease?” This is a question I get more often than I care to acknowledge. The intention behind the inquiry is often quite different from person to person. While I recognize the validity of the question, it bothers me. It’s in the best interest of chronically ill people to work together to support each other, and sometimes questioning, intentionally or not, can come across as a micro-aggression. Diagnoses of Fibromyalgia and Lyme disease often go hand in hand, and the answer to the question is more complicated than a simple yes. Here’s the short summary– getting diagnosed with Lyme disease did not erase my diagnosis of fibromyalgia. Things just make more sense now.

Which Came First?

Fibromyalgia is often diagnosed when nothing else seems to fit. I know because I’ve been down that road. Unexplained pain, sensitivities, exhaustion, fatigue– you name it, and chances are if a blood test rules out (or misses) other diagnoses, fibromyalgia comes into play. I’ve done a ton of reading lately and learned that many, many patients with late-diagnosed Lyme disease were diagnosed with fibromyalgia years before Lyme. This doesn’t mean that they don’t have fibromyalgia. It simply opens the door for a conversation about co-infections, cause and effect, chicken-and-egg theories, and, occasionally, clarity.

I’m not educated enough to form an opinion about whether Lyme disease is a cause of fibromyalgia. But I do know that they share a lot of commonalities. The overlaps, for me, are undeniable. Exaggerated pain responses, overactive nerves (especially in my right foot), crippling exhaustion, brain fog, fatigue…the list goes on and on.

I was first diagnosed with fibromyalgia as a young athlete who was living in otherwise unexplained misery. It’s worth noting that no one bothered to test me for Lyme disease or any other tick-borne infections until many years later. But does that change anything? For me, not really. Lyme disease can’t be carbon-dated. There’s no way to know if a Lyme infection was present in my body all those years ago when I was diagnosed with fibromyalgia. It’s possible that I got Lyme several years after fibromyalgia. It’s also possible that Lyme has been with me far longer than I can imagine.

Lifestyle Management

The main thing for me for both fibromyalgia and Lyme disease is lifestyle modification. Everything I eat, every action I take, every decision I make is colored by being someone with chronic illness. I eliminated gluten, dairy, most processed foods, refined sugar, and industrial seed oils from my diet a long time ago. The exception there is sugar, because sometimes exercise and exertion levels demand a quick shot of energy. But those times are quite rare for me. I made those dietary changes after I was diagnosed with fibromyalgia. All I had to do was tighten them up a little more once I talked with a Lyme specialist.

Exercise is a huge component in the management of chronic illness. I tend to err on the side of doing too much. That was certainly true long before Lyme disease was mentioned in my medical history. (Hell, this website is called Fibromyalgia Athlete for a reason.) The only way I’ve seriously modified my exercise since learning I have Lyme is to be much more careful when exercising in the heat. Babesia, a tick-borne parasite, came along for the ride with my Lyme infection. It’s largely responsible for my heat intolerance and electrolyte imbalance issues. Nowadays, I’m much more careful about spending time in the heat.

Insomnia

Sleep is a major deal for me, or, more accurately, insomnia is a major deal for me. I didn’t sleep more than a few hours a night for over a decade, most of those years falling under “the fibromyalgia years.” Insomnia is also extremely common in Lyme disease patients. So I either have a double dose of insomnia-inducing issues or one of them is the primary contributor. At this point, I don’t care which is the culprit.

Chronic illness, whether fibromyalgia or Lyme disease, will only get worse without adequate sleep. Addressing the problem rather than fixating on the possible cause is much more worth my time. In my case, for now, tweaking supplements has made a huge difference. I largely follow the Buhner Protocol and swear by Stephen Buhner’s book Healing Lyme. Good-quality hemp oil has also helped manage my chronic pain and overactive nerves. My favorite is Runners High Herbals. I’m still not sleeping enough, but for someone with longstanding fibromyalgia, Lyme disease, and babesia, I’m doing pretty damn good compared to how my sleep used to be.

Testing for Fibromyalgia and Lyme Disease

The biggest thing, I think, that really separates fibromyalgia from Lyme disease is the ability to diagnose with a blood test. The blood tests, especially those covered by insurance, are notoriously inaccurate from what I’ve read, but they do exist. As of my last reading and search, there’s no definitive blood test to diagnose fibromyalgia. The caveat there is, a lot of physcians understand that Lyme disease is every bit as much a clinical diagnosis as fibromyalgia is, and false negatives on blood tests can happen for lots of reasons.

My personal example of test failure is from my first babesia blood test. The doctor–someone I don’t use anymore–ordered a test that looked for antibodies. The Lyme specialist later explained to me that that test was pointless. Because with an IgM of 27, there was no way my body could’ve made enough antibodies to show up on the babesia test. His theory was immediatley proven correct when he started me on babesia meds and I felt and saw immediate results. Since there isn’t a blood test for fibromyalgia, I didn’t have to go through any ups and downs with false positives or negatives.

Every case of fibromyalgia and every case of Lyme disease is different. No disease process looks exactly the same from one person to another. I think it’s important, especially if fibromyalgia treatments aren’t working for you, that you get tested for Lyme disease if you think there’s a shadow of a chance you could have it. The thinking on Lyme varies greatly from doctor to doctor, but that’s also true of fibromyalgia.

Books

As with anything, keep looking until you find a practitioner who respects you and treats you as a person and not just a number. A good place to start for more reading about both fibromyalgia and Lyme disease is in books. Two of my favorites are Healing Lyme by Stephen Buhner and Why Can’t I Get Better by Richard Horowitz. Whether you have fibromyalgia or Lyme disease or both, the important thing is getting the help you need to live the life you want. Both fibromyalgia and Lyme disease can be lifelong journeys. Expanding your knowledge base and finding competent practitioners can go a long way toward a better life.

Running Gear Favorites

I write about serious health stuff a lot, but I also love to talk about lighthearted and upbeat topics. Life’s about balance, right? So, along with my very serious Lyme disease post, I’m also finishing 2019 by writing a quick highlight of three of my favorite pieces of running gear that I acquired this year.

Altra Kayenta

altra kayenta
The Altra Kayenta shoes are light and flexible enough for agility workouts in addition to running.

I was ridiculously devastated when Altra decided to discontinue their Intuition, but their new Kayenta helped dry my tears. They’re different from any shoes I’ve ever worn, but once I got over the novelty, I fell in love. They’re lightweight, flexible, (zero-drop like all Altras), and shaped like my feet. I like the colors, too.

Headsweats Hats

headsweats bigfoot
Headsweats makes trucker hats that actually fit my head rather than swallowing it. And they have Bigfoot on them! Well, not on all of them, but on several. This one’s my favorite.

I spent 2019 as a first-year ambassador for Team Headsweats, and it was such a cool experience. Not only did I get to connect with other outdoors-loving athletes, but I also got some really awesome gear from Headsweats. It’s hard to pick my favorite, but their Bigfoot collection wins in my book. I usually run in their high-visibility race hats and hike in the Bigfoot trucker. All of them are comfortable, have a black underside to the brim, and help keep sweat and sun out of my eyes.

AfterShokz Titanium Mini

aftershokz
I can hear cars, people, and animals just fine while also singing along to some embarrassing songs that shall go unnamed. Side note: that’s a Headsweats hat I’m wearing, and it doesn’t interfere with the Aftershokz headphones.

Many years ago, I ran with a tiny iPod shuffle and conventional headphones. After almost getting hit by a car– like, really almost getting hit– I never wore headphones outdoors again. I ran the wire up my abdomen and stuck the earbuds in my bra. Turning the volume all the way up basically turned them into tiny, horrible-quality speakers, and I sometimes got little raw circles on my chest from where the headphones rubbed. And then (cue the movie music for the big reveal) I read about AfterShokz, a company that produces open-ear, bone-conduction headphones for athletes. They’re life-changing. This photo is of them in action, not bouncing, rubbing, or making me deaf while I run across an intersection. The sound quality is excellent, although I refuse to admit to some of the bizarre and embarrassing stuff that’s on my playlist.

Did you get any new favorite running gear this year? If so, I’d love to hear about it. And here’s to the new year!

Chronic Lyme Disease

trail running
I’d like to say that 2019 was all about mountains, running, and enjoying nature, but in reality, I was in the fight of my life and for my life.

I don’t think there’s such a thing as a 100% bad year, but 2019 came pretty close. Even as I type that, it doesn’t feel true. There were some absolutely awesome moments, from traveling for book tour events to hiking in gorgeous places to running past a bear in a tree. But overall, my health was terrible this year. Scary terrible. I finally got a definitive diagnosis, and it wasn’t good news: chronic Lyme disease.

In the past, the various diagnoses– cervical dystonia, fibromyalgia, relapsing-remitting multiple sclerosis, and the list goes on– ate away at my body and my mental health. Until this year, nothing attacked my cognition, and I can easily say that losing my ability to think clearly– to reason, to comprehend, to remember simple things– is the most terrifying problem I’ve ever had. The week of Thanksgiving, I finally got some clarity in the form of a doctor who spent nearly two hours with me, one-on-one, without interruption. From passing out in the hall in the middle of the night to getting lost in my own neighborhood to crushing headaches to constant exhaustion and a million other awful symptoms, the answer, for him, was simple. Lyme disease. Chronic Lyme disease, to be exact.

lyme disease
This photo represents how I spent a huge chunk of 2019. I took it during my lunch break at work. The bandage from a pre-work blood draw was still on my arm, and I was pale, miserable, and exhausted. I continued to work what were sometimes very long days, but by lunchtime most days, I could barely function. I’m lucky to work in a small PT/Chiropractic clinic where the staff is like family and comfort measures abound.

I was too sick for a while to fully comprehend anything, let alone a breakthrough diagnosis. I spent my days trying to make it through work at a job that I’ve done for almost nine years with previous relative ease. I spent my weeks wondering when bloodwork would come back (so. much. bloodwork.), and I spent my nights exhausted but unable to sleep. A depression that I can only describe as a feeling of being possessed took over. Migraine-like headaches left me even more exhausted.

Mast Cell Dysfunction

The first problem the doctor began to work on, almost immediately after our initial few minutes of discussion, was what he said is secondary mast cell dysfunction. I’d never heard of that before, and had no idea it could go hand-in-hand with chronic Lyme disease. I hadn’t even made much of a big deal about the symptoms, since they seemed so inconsequential compared to the other debilitating problems that I had. But when I described sneezing, coughing, gasping, and getting congested after every meal, the doctor paid close attention.

I showed him two videos (chronic pain patients know we need proof because practitioners often doubt what they can’t see) of me literally ingesting nothing but water and going into a massive sneezing fit. He diagnosed mast cell dysfunction and told me to immediately start taking Zyrtec every morning. I’m not a fan of Western medicine unless it’s absolutely necessary. I’ve been burned by side effects many times, but I reluctantly bought some store-brand Zyrtec and popped one before breakfast the next morning. No coughing, no sneezing, and barely a sniffle after I ate. It was just short of miraculous.

Lyme Diagnosis

The Lyme disease diagnosis was not so simple to handle. I’m learning more than I ever thought there was to know about Lyme disease, especially chronic Lyme disease. There’s a big chunk of practitioners who, for various reasons, fight about it, but I’d rather not go into that much. People will always have big opinions and big mouths, but I prefer to only listen to and respect the ones who deserve it. Dr. Richard Horowitz does a great job of explaining all this, if you’re interested. Look up his book called Why Can’t I Get Better for details. The main thing I know is, I’ve been very, very sick for a long time and now I finally know why.

I’m scared. I’m scared for my present and for my future. I wonder if I’ll ever get full cognitive function back, and the idea that I won’t is haunting. I have a binder dedicated to symptom tracking and Lyme disease information, and I’m beginning to solely focus (as much as possible) on majorly reducing my symptoms. There isn’t a cure, and I’m so NOT ok with that that I’m considering going back to school to become a researcher who works for a cure. In the meantime, I’m starting an herbal regimen (Stephen Buhner’s chronic Lyme disease protocol) and managing minute-to-minute fluctuations in energy, mood, and cognition.

lyme disease running
Running isn’t everything, but it’s a huge part of my happiness. I’m beyond grateful that, at least for now, the herbal regimen I started (plus my very clean diet) has allowed me to do what I love. Nothing about chronic Lyme disease is easy, but everything seems better after a good run.

After about a week on some high-quality, Lyme disease-targeting herbs, my energy level increased and I was able to start running again. That was a godsend. Running has long been my sanity-keeper, and the fresh air and trees are the best medicine for everything. I’m already a medical marijuana patient, so I have access to MMJ for sleep, but I also added CBD oil to my regimen. Lyme disease, once it spreads and becomes chronic, can cause an awful condition called Lyme arthritis, so I’m also starting on powdered gelatin. I made Golden Milk for the first time yesterday and am tightening up my diet more than ever. If you haven’t tried Golden Milk, I highly recommend Googling a recipe for it. It’s a warm concoction of anti-inflammatory foods, and while the turmeric can be a little potent for some people, I thought it tasted pretty good.

I started out reading everything and anything I could about chronic Lyme disease. I read studies that showed things like oregano oil and stevia work well to fight the bacteria, and other studies that showed garlic can be helpful. I read and read until knowledge-gathering become too much of an obsession, so now I’m alternating reading Lyme disease-related stuff with fun magazines and running books. Knowledge is power, but it can be oppressive, too.

I go back to the doctor in a few days and we’ll make a plan on how to go forward from here. I don’t know if he’ll want me to start strong, long-term antibiotics or not, and I’m not sure how I feel about that. I’ve talked to so many people who’ve had poor results from antibiotics and/or who had only very short-term success. But I’m sure they work great for some Lyme disease cases, and ultimately I have to decide what’s best for me, not for others.

I’m still spinning from the diagnosis and the fallout– I lived for YEARS with relapsing-remitting MS, except now I know that wasn’t true, and it’s freakin’ bizarre. I have a lot, lot more to say about chronic Lyme disease and how it’s affecting my life, my running, my work, but the brain fog is awful and it makes gathering thoughts quite challenging. For now, I’ll leave you with two of my favorite (so far) resources for chronic Lyme disease patients.

Lyme Disease Books

  • Stephen Buhner, an herbalist, has done extensive research on Lyme disease. You can buy his books on Amazon and learn a lot from his website. I bought Healing Lyme, and it’s a wonderfully informative, well-researched book. I would LOVE to meet Stephen but I recognize that this is a pipe dream of epic proportions.
  • Richard Horowitz is a doctor who’s worked extensively with Lyme disease patients. I bought his book Why Can’t I Get Better, and it’s a solid resource for a mixture of Western medicine, anecdotal evidence, real-life examples, and Eastern practices. He seems like the type of compassionate, thorough doctor that most of us would hope and pray would treat us.

Summer Trail Running

It’s not quite Thursday yet, but here’s my TBT to some awesome hiking and trail running this summer. I can’t wait until my iron deficiency clears up and I can hit the trails again! My new Altra Lone Peaks were barely broken in before my ferritin level dropped so low that I couldn’t run, and every time I see them in the closet, they look sad and ready to go. I can definitely relate!

It’s finally cooling down a little here in FL, which means prime trail running weather is almost here. The Florida Trail, which essentially runs from Pensacola Beach to the Everglades, is a great, diverse trail system. My favorite sections to run are through Blackwater State Forest and through the Gulf Islands National Seashore/Ft. Pickens property. I hope I’m well enough to run before November, but if I have to wait, so be it. My Lone Peaks and I will grit our teeth and wait. I’ve been through a lot this year, but I’ve never lost sight of my goals, hopes, and dreams. Onward, friends.

trail running
North Carolina is my favorite trail running destination.
altra lone peak
My new Altra Lone Peaks served me well and look quite nice next to a turkey feather.
female trail runner
I usually don’t wear headphones while trail running, but AfterShokz allow me to hear nature and music at the same time because they use bone conduction technology rather than blocking the ears.
mountain view trail running
I saw some of the most gorgeous parts of our planet while running this summer. The mountains are my favorite.

Low Ferritin Level

low iron food

I felt bad for months without answers and had no idea that low ferritin could be the culprit. The first sign or symptom, I think, was when my feet suddenly hurt so bad that I couldn’t walk. I went from comfortably running 12+ miles at a time to being unable to take a single step. The pain in my feet was incredible. A five-week saga involved complete rest, new shoes, custom arch supports, and tons of medical treatments that didn’t work. Then a young chiropractor finally got to what seemed to be the root of the problem.

Near the knee, the sciatic nerve splits into two and becomes the common peroneal nerve and the tibial nerve. Extremely tight calf muscles were compressing the nerves, which in turn sent agony to my feet. The chiropractor used e-stim, heat, and RockBlades on my calves, then adjusted the bones in my ankles. The difference was immediate and shocking and wonderful. I went from no life to an almost normal one, or so it seemed.

But as time passed, my calves stayed tight no matter what, so my feet still hurt almost all day and night. I drank extra water, used a foam roller, a stick roller, and had my colleagues RockBlade my legs, but the pain and tightness always came back quickly. I knew something still wasn’t right, but I was so damn tired of going to doctors and spending time and money that I just decided I might have to manage my calf issues indefinitely without a real answer.

Decreased Exercise Tolerance

That was late spring. As I made my comeback to running and strength training, I never felt right. I was sweating profusely after even short, early-morning runs, my endurance stopped progressing, and I began to feel dead tired after any exercise at all. After so many years of chronic health problems, I wondered if what was happening was a natural progression of the disease process. I also started noticing that I had increasing trouble concentrating, felt exhausted most days, and my usual insomnia was worse than ever.

low ferritin runner
This was my last run before low ferritin forced me to stop. I needed tons of breaks during that run, felt extremely overheated, and looked pale. It was only three miles but felt like thirty miles.

Things really took a turn for the worse when I drove through eight states to get to Baltimore for a few days of work. What should’ve been a fun, exciting solo trip that involved camping, a super nice hotel, old friends, new friends, and tons of adventure was downright terrifying. The four nights I was in the hotel in Baltimore, I honestly thought I was going to die. I couldn’t sleep at all despite being beyond exhausted. The mental fog was incredible and like nothing I’d ever felt. When I laid down at night, I was so tired and sick that I would tremble hard enough to lift my body off the mattress. I began living on extra coffee and energy drinks and strained to keep up professionally and socially. I had no idea what was happening but was very afraid.

Urgent Care and Primary Doc

I thought I’d start feeling better after I got home, although the justification for that thought was pretty weak and didn’t pan out to be true at all. I continued to get worse and despite HATING going to medical facilities, I went to urgent care one night when I was so lightheaded and wracked with tremors that I thought I might be dying.

My blood pressure was 82/58, then suddenly shot up to 140/92. An EKG showed that my heart was in atrial fibrillation (AFib), and I almost passed out a few times in the exam room. The urgent care doctor wanted me to go to the emergency room, but I refused. After years of dealing with our medical/industrial complex, the last place I want to go is a hospital. I went home and made an appointment with my primary care doctor and crossed my fingers that I’d live long enough to get to the appointment.

I developed all kinds of theories about what was going on, from reactions to supplements to simply, “I’m dying.” My doctor ordered a huge battery of blood tests and said he suspected iron deficiency. He told me to start taking iron pills just in case, and that if the bloodwork results showed I wasn’t anemic, it wouldn’t be a big deal to have been on the pills for a week. I hadn’t eaten red meat in a long, long time and had unpredictable, heavy periods, so his theory seemed plausible. I agreed to the blood draw— my first bloodwork in more than two years (I wasn’t kidding when I say I hate going to medical facilities).

Bloodwork Results

I began taking iron pills every morning and begrudgingly ate beef. I didn’t feel better at all and was too exhausted to run more than a couple miles at a slow pace and with frequent breaks. Eventually, I couldn’t run and could barely even function during day-to-day tasks. My thinking, concentration, and mood got so bad that I felt like I’d had part of my brain removed. Since the doctor ordered such a massive volume of tests, the bloodwork took more than a week to come back. When it finally did, several truths were revealed. I had extremely high testosterone, which could partially account for my months of extreme sweating. My progesterone was rock-bottom, which further signaled major trouble with hormones. My white blood cell count was low as though I were fighting a bad virus, which was unexpected and never fully understood.

And, perhaps most telling for my symptoms, my ferritin level was in the basement. (For those who aren’t sure what a ferritin level is, here’s what Mayo Clinic says about it: “Ferritin is a blood cell protein that contains iron. A ferritin test helps your doctor understand how much iron your body is storing. If a ferritin test reveals that your blood ferritin level is lower than normal, it indicates your body’s iron stores are low and you have iron deficiency.”) So, my doctor’s suspicion about iron-deficiency was well-founded, but there were also other issues to address.

My next doctor’s appointment was a few days after the bloodwork came back, but I saw the results online in my patient portal before the appointment. I understood pretty well what was happening but still had tons of questions. I spent a solid hour making a list (yes, an hour for a list, which is indicative of how bad my cognition got) of questions to ask him during the appointment. Every aspect of my life was affected. I was depressed beyond measure, stupid beyond reason, and exhausted to the point of near death. I hesitate to say I’ve never felt worse, but I think it’s true.

Treatment Plan for Low Ferritin

low iron food
My daily food intake now includes organic, humanely raised beef. Heme-iron is supposedly more easily absorbed by the body, so I’m learning to live with being a meat-eater. Cooking in an iron skillet is supposed to help, too.

Based on the bloodwork, my doctor quadrupled my iron pills, added liquid vitamin B to my supplement regimen, and sent me to a compounding pharmacy for a custom concoction of progesterone cream. He also prescribed Tamiflu to knock back any viral infection I might have, and ordered me to stay out of the heat and to not overexert myself at all. His reasons for why my ferritin level was so low were speculative but seemed reasonable— heavy/frequent periods, heavy sweating, long-distance running, and lack of dietary meat. He said heme-iron, the kind that comes from animal products, is the most readily absorbed by the human body, and that at least for a while, I’d need to eat meat again.

easy iron
Before my doctor’s preferred brand was back in stock (OptiFerin-C), I took Country Life Easy Iron. I didn’t notice any improvement while on it, but I only took one pill daily and wasn’t even on it two weeks before switching to OptiFerin-C.

We discussed an intravenous iron infusion to raise my low ferritin level. He didn’t want to risk me going to the hospital for the infusion with my health history and low white cell count. I struggled to take a deep breath, struggled to walk to my truck, struggled to concentrate. I knew there could be nasty side effects to taking four iron pills per day, but I also knew I couldn’t keep going on a fake-it-til-you-make-it mentality. The way I felt was affecting every aspect of my life. I’d called in sick a few days at work for the first time in years. I don’t have benefits, so calling in sick means losing significant money, which is pretty much the last thing a person needs when caught up in our broken, profit-mongering medical system.

Slight Progress

I asked for a timeline for improvement. My doctor said he hoped I’d start to feel better at the two-week mark, but that the 4x daily iron pills might still take six months to restore me to a healthy ferritin level. Six freakin’ months? I tried to focus on his two weeks comment. Two weeks is a long damn time, but six months sounded like something I couldn’t handle. Running and hiking are my major stress relievers. To not be able to do those things during such a hard time was even more crushing. But I’d gotten to the point of feeling so out of it— totally disconnected from life— that I almost didn’t care.

optiferin-c
My doctor has me on OptiFerin-C 4x per day to address my iron deficiency.

I’m now on day fourteen of taking iron four times a day. I have no way of knowing if my low ferritin level is rising a little, rising a lot, or staying the same, but I feel different. My next blood draw won’t be for another month unless I get worse. I hope it shows a huge rise by that time. I hope I feel so good by then that I’ll almost forget what I’m fighting. At this point, I do NOT feel good and haven’t noticed nearly as much progress as I thought would happen by now.

floradix
I read good things about liquid Floradix and decided to buy some at our local co-op. It’s a German product, which is unusual to see here in the deep south USA. I’m thinking about substituting one of my iron pills for a swig of Floradix each day.

The side effects of big doses of iron aren’t hitting me super hard, but my period came early and heavy and it’s possibly undoing a lot of the progress that I’d started to make. Heavy blood loss is one of the worst things for iron deficiency. My coworkers, patients, and family say I look better, and that there’s more color in my face than there had been for months. I’m not quite as stupid or exhausted as I was. The hot flashes are coming a little less often. I’m able to do light strength-training indoors with the AC blasting.

I still have zero heat tolerance, am foggy-brained, and very tired, but everything is a little better. One of the biggest changes is the pain in my feet and legs– it’s almost gone! But do I feel good yet? Definitely not. It’s amazing how long this process takes. Hopefully in a couple days, when my period is gone and I’m at the two-week mark on iron pills, I’ll really start to notice a difference. I miss running and hiking. I miss thinking clearly and I miss being sort of smart, but at least I finally see a tiny pinhole of light at the end of the tunnel. Y’all, don’t be like me. Get your routine bloodwork done and don’t try to hide how bad you feel. It can really suck to get caught up in the medical system, but avoiding it when something’s wrong is dumb. Don’t be me. Don’t be dumb.

Symptoms I Experienced with Low Ferritin

  • Exhaustion
  • Insomnia
  • Confusion
  • Decreased Cognition
  • Fatigue
  • Constant dehydration
  • Bilateral calf spasms
  • Irritability
  • Depression
  • Anxiety
  • Shortness of breath
  • Dangerously low blood pressure
  • Hot flashes
  • Profuse sweating
  • Heat intolerance

Capsulitis and Foot Pain

My feet are still not functional after a month of rest. I do, however, finally have more precise answers. The second specialist I saw diagnosed me with severe capsulitis, especially in the second metatarsophalangeal joint. Theories abound about how it happened. The main thing now is getting it fixed so I can first walk, then hike, then run again.

The pain of capsulitis is like nothing I’ve ever felt. Through all the years of spinal issues, chronic pain, and other health problems, nothing compares to capsulitis. My right foot is now the worst, although it started out opposite. Luckily, the pain is starting to localize a bit and is primarily focused on the joint capsule of the second metatarsophalangeal joint.

Through many sleep-deprived nights (I’m an insomniac anyway, but the nighttime pain in my feet has been unbearable), I’ve done a ton of research on capsulitis. There are a ton of theories out there, and as is often true with health-related information, a lot of the theories directly contradict each other. One example is in footwear. Many podiatric and orthopedic websites (and doctors) swear by a rocker sole for a shoe, while some decry traditional shoes as part of the problem. As with all things, it’s best for me if I gather information and opinions and then form my own plan.

Shoes for Capsulitis

Since I already run in zero-drop, wide-toebox shoes, I’m definitely a believer in natural foot motion and foot strength. I think it’s possible that my capsulitis developed from walking in more traditional footwear: i.e., the kind with toe spring and a major heel-toe height differential. For those who’re clueless like I was, “toe spring” is the amount of upward turn in the toe are of the shoe. If you think about it, that really is an unnatural, weird position for the human foot, which is meant to be flat on the ground when standing.

Debilitation of Foot Pain

The pain, swelling, and dysfunction in my feet go so bad that capsulitis landed me in a wheelchair. It was almost surreal to be pushed around the park in a wheelchair because of foot pain. The fresh air and change of scenery was great, but it was unbelievably frustrating to be in a chair for what seems like a ridiculous reason. The capsules that’re causing this misery are tiny, but holy crap are they sensitive. 

Solutions for Capsulitis

metatarsal pad for capsulitis
The red-pink, pacman-like outline is for the custom metatarsal pad my doctor made to treat my capsulitis. He used a cutout at the top to give extra room for my swollen joint capsule.

One of my coworkers helped me tape custom-cut (courtesy of a wonderful podiatrist), firm felt metatarsal pads into the metatarsal arch area. By elevating and supporting the metatarsals, plus wearing flat, zero-drop shoes, some of the pressure is taken off the capsulitis. I’m able to hobble-walk with a borrowed rollator, which isn’t awesome, but it’s a hell of a lot better than being in a wheelchair due to foot pain.

capsulitis pain runner
Capsulitis is extremely painful. I’m using a rollator so I can get some upper body and core workouts done while I can’t walk or run.

I’ve been good about doing upper body and core workouts throughout this nightmare, but it’s demoralizing and depressing to be unable to walk, run, or hike. A major trip was postponed and I began to reach a scary level of depression and hopelessness. Throwing everything at capsulitis—ice baths, epsom salt baths, CBD oil, ibuprofen—and getting no results was crushing. My auto-immune specialist called in a prescription for a Medrol dose pack. Steroids aren’t necessarily standard treatment for capsulitis, but I was desperate and he was quite worried about the raging, long-lasting inflammation. I’m on day three of the steroids. They’ve made me a bit more emotional, they’re slowly helping clear up the agony of capsulitis. 

One thing I’ve become conscious of is my toe position. It seems that for some time, I’ve been walking with my toes bundled together. I think I’ve been running that way, too, but I’m not sure. I have no idea why that’s happening, other than weak intrinsic foot muscles and tight extensors in my feet. I found a website with a wealth of information about all things feet, and I highly recommend checking it out if you’re suffering from capsulitis or any other foot malady. There are a ton of informative videos available for free, especially on common complaints such as plantar fasciitis. Click here to get to the the video library of all things foot-related. 

The next phase of the plan to heal my capsulitis is more of the same for several more days—rest, elevation, gentle stretching of the extensors, and gentle foot mobility exercises. I’ve never been this sedentary in my whole life, but it’s necessary for now. The core and upper body exercises are keeping me a little bit sane. In a few days, I go back to my auto-immune specialist, and then back to the podiatrist. I’ll be done with steroids by then and really, really hope to feel good enough to declare capsulitis a thing of the past. For now, I’d be over the freakin’ moon if I could just take a few normal, pain-free steps. Capsulitis sucks big time and I never want to go through anything like this again.

UPDATE!

It’s a long, long story, but my problem turned out to be coming from entrapped nerves in the calf musculature. After intense sessions with Graston technique (Rock Blades, scraping, and other names, all pretty much the same thing), my foot pain was drastically diminished. I now keep it away by obsessively rolling my calves with a foam roller, stretching my calves, and wearing calf compression sleeves. It seems it wasn’t ever a foot problem at all, despite multiple doctors saying it was. If you’re having issues with capsulitis or other foot maladies, it’s probably worth getting a good, deep calf massage and seeing if you get results!

Transverse Arch Dysfunction

feet in ice bath for transverse arch pain
I can’t stand cold and have to be careful because I have Reynaud’s, but the ice baths have helped bring down the inflammation in my feet.

My stellar run in new shoes turned out to be not so stellar at all. Despite feeling fine during the 6.25-mile run, and fine during a walk later in the day, I woke up the next day with sore feet. Those sore feet turned into agony and debilitation when I tried to to walk to the park near my house. Within a quarter mile, I had to stop. I couldn’t even get myself home and had to call for a ride. My feet felt like something was tearing off the bones in the space between my metatarsal heads and my toes.

I had no idea what was going on and had never felt such pain before. Perhaps scariest, the burning, tearing sensation was in both feet. I only felt it during push-off in the gait cycle, but of course that’s a major component of walking and running. I discovered that if I took off my shoes and socks and walked barefoot, I was pain-free. But as soon as I put on shoes– any shoes, regardless of model or style– the bilateral foot pain was so intense I couldn’t take a single step.

Transverse Arch Pain, Not Plantar Fasciitis

After extensive Googling that consistently turned up results for plantar fasciitis even though plantar fasciitis didn’t make sense with my symptoms, my fear and discouragement grew. I co-taught anatomy & kinesiology at our local community college for four years, but still couldn’t figure out what was going on with my feet. I pulled out the two textbooks I kept from my teaching days and still couldn’t quite make sense of what I was seeing. The internet definitely wanted to convince me that I had plantar fasciitis, but I knew that wasn’t right. I started wading through information on the structures of the foot and paid particular attention to the transverse arch. Bingo. The transverse arch essentially runs through the foot rather than along its length. I honestly didn’t even know the transverse arch existed until it caused me some of the worst pain of my life.

I’ll spare the details of a very intense eighteen days, but suffice it to say that the last couple weeks and days have been terrible. With the help of other practitioners, including an orthotist, we decided my hunch was right about the transverse arch in each foot. I tried everything, spent a ton of money on shoes (most of which I returned), used supportive insoles, and nothing helped. The insoles made me even more miserable because they were so rigid and high that my longitudinal arches and heels started to ache. The orthotist showed me metatarsal pads, which are essentially hard little pieces of foam that look like large guitar picks. If placed behind the metatarsal heads, the pads should support the transverse arch. I took the little pieces of foam home with renewed hope that I could at least walk from one room to another without agony.

In Search of Metatarsal Pads

The met pads (lingo, so I’ve discovered, for metatarsal pads) were a new kind of misery, but they had potential. Unlike the full-length insoles, the met pads targeted one problem area, the transverse arch, rather than trying to rework the entire shape and mechanics of my feet. I sanded down the hard foam to make them not so intrusive, but they still felt like smooth rocks under my feet.

A trip to Walgreens for something to support my transverse arches was a bust, but CVS provided a little more hope. I bought a package of thin, soft foam metatarsal pads. They were much larger than the met pads from the orthotist, but I cut them down with my old EMT scissors until they were the same shape and size as the hard foam ones. I put one in each shoe, and after a lot of misery and trial and error, was finally– after two weeks– able to walk semi-humanlike. The thin foam must’ve been just enough to support my transverse arches without feeling like I was walking on rocks.

homemade metatarsal pads
The remnants of my homemade metatarsal pads for transverse arch pain and dysfunction.

After a day, though, the pain got worse again, even with my homemade met pads. I realized that the cheap foam must’ve compressed too much and not rebounded, even though I’d probably walked only a total of a quarter mile on the pads. I cut another set and doubled them on top of the originals and began moving somewhat humanlike again. Transverse arch pain is no joke! This is some of the worst pain and debilitation I’ve ever experienced, even beyond the years of back and neck issues I’ve suffered.

Followup with the Doc

As things stand now, I’m heading back to the doctor tomorrow for an updated plan. I haven’t run in almost three weeks and can still barely walk, but the left foot seems to be improving. The right foot is the worst, which is weird because it started out better than the left. I have all kinds of ideas for inexpensive ways to custom-build some met pads for myself and will likely take a trip to Home Depot and/or Michael’s tomorrow to buy industrial foam and craft foam. Medical supplies are marked up so high, but it’s easy to find workable materials other places that will stand in just as well as the so-called specialty medical crap.

I’m very worried about my feet, especially the right one, but worry and anxiety only contribute to pain, so I’m trying to chill. I have newfound knowledge about the transverse arch, but I wish I never had to know anything about it. Here’s hoping tomorrow’s doctor’s appointment is worthwhile and helpful. I’m going crazy without running, walking, and hiking.

Headsweats Ambassador

headsweats ambassador
Wearing my new Headsweats Ambassador shirt, Headsweats hat, holding my book, and snuggling a friend’s adorable dog.

I’m now a Headsweats ambassador! I wrote a book about my journey (Hurting Like Hell, Living with Gusto: My Battle with Chronic Pain), and while all books have an ending, the real story keeps evolving as long as I live. For any of you who’ve followed the Fibromyalgia Athlete blog over the years or read my book, you know the ups and downs are quite a ride.

To go from nearly crippled by injury to writing a book about it and now being an ambassador for a running-focused company is surreal, and I’m beyond grateful. Being chosen as an ambassador reminds me of how far I’ve come and gives me a larger platform to share encouragement with others. And I happen to love running in Headsweats gear, too. They make the only hats that don’t bother my ears (I have small ears that sit very close to my head and are quite sensitive). The underside of the brim is always black regardless of the hat color. In Florida, the sun stays bright all year long and that black underside really makes a difference in cutting glare.

If you’re interested in ordering any Headsweats gear, I have a code for 25% off: VICTORIASTOPP25. Feel free to share the code far and wide. I’m having a setback right now and am unable to run, but I hope to be much better soon. See y’all outside!

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.