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 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.