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.

Chronic Pain Book Sale

fibromyalgia bookTemporary price drop! The Kindle version of Hurting Like Hell, Living with Gusto: My Battle with Chronic Pain is down to $3.99. If you or someone you know has dealt with chronic pain and/or is an athlete, you can probably relate to my story. I was originally injured while working as an emergency medical technician and have fought for years to regain my life on my own terms. Among the series of diagnoses I received was fibromyalgia, which was the catalyst for starting this blog.

My publisher handles pricing so I’m not sure how long the sale will last, but I’d be eternally grateful if you’d spare a few dollars and check out my work. My book recently earned a gold medal in the Florida Authors and Publishers’ President’s Book Award contest. Thanks for your support through all these years of blogging and writing! Click here to find the book on Amazon.

Book Award

victoria stopp
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.

Tuft & Needle Mattress Review

I bought a Tuft & Needle mattress last week and it arrived yesterday. I’d heard great things about their mattresses and ordered one to try. I hate the high pressure and high prices in mattress stores and have never felt that lying on a bed in a showroom gave me a realistic impression of how the mattress would perform at home. Tuft & Needle has a great guarantee and their mattresses are made in the US. Their prices seem fair— not dirt-cheap, but they shouldn’t be, since they’re good quality— and they use a patented type of foam that’s supposed to be awesome. The mattress arrived within a few days, as promised, and was tightly rolled in plastic for shipping. It was heavier than I expected, but two of us were able to get it into the house and out of the box.

After we cut away the plastic, the mattress expanded. It was like magic. Not only did it get much bigger than its shipping size, but it quickly took nice, firm shape. Tuft & Needle advises waiting 2-3 hours before lying on it, so I let it air out in the bedroom while I went for a long walk and played with my dogs. The mattress had a bit of an odor, but nothing like the horrific, chemically smell I’ve experienced with other new mattresses. When it was time for bed, the odor was only detectable if I put my nose against the mattress.

I stretched out on the mattress with high but cautious hope. Sleeping—especially getting comfortable at night— is still a major problem for me. I’d done a two-hour private yoga session that morning to try to work on my rigid legs, and my back was aggravated from the new movements. The Tuft & Needle mattress had to be perfect if I was going to get any sleep at all.

And it was perfect. I mean, literally perfect. I still had to stack pillows under my knees to keep my back comfortable, but that’s no fault of any mattress. Once I arranged myself into my usual sleeping position, I laid there and closed my eyes and waited for discomfort that never came. The mattress was absolutely awesome— the best surface I’ve slept on in many years.

I needed to shift to my side once during the night, and because the T&N is quite firm, I had to make sure the fatter part of my cervical pillow was stuffed under my neck just right. Twenty seconds or so of pillow placement yielded good results, and I slept for another two hours without disturbance.

When I woke up this morning, my usual aches and pains weren’t cured (and I didn’t expect them to be), but I’d slept well and actually look forward to going to bed tonight. I haven’t looked forward to going to bed in as long as I can remember, because it’s usually a disappointing battle that leaves me stiff and in pain. Assuming the T&N keeps up its quality, I can see where sleeping on it could be life-changing.

This afternoon, I contacted one of their customer service reps to ask if they make camping versions of their mattresses. They don’t (yet?!), but the rep was not only instantly available via online chat, but extremely helpful and polite. What a relief, and a departure from the norm for a lot of purchases— a good product, good customer service, and made in the United States.

I have no connection at all to Tuft & Needle. I paid full price for my mattress and only wrote this review because I hope other people will read it and potentially find something that may help them sleep comfortably. Night-night, y’all.

Life with Chronic Pain

Sleep is a sticking point for a body in chronic pain. It’s what I crave the most—to just lie down and close my eyes and not wake up for hours—but it’s often a craving left unsatisfied. Most mornings begin one of three ways.

I wake up as the dogs rattle around in the kitchen, sniffing for errant kibble under their blankets and bowls. I take stock of the situation—is it really morning? How much sleep was I able to get? What muscles are spasming? Am I able to turn my head or is it stuck in one direction or the other? I’m stiff, sore, and need to get out of bed quickly before I can’t get up at all, but I’m thankful to have gotten a few hours of sleep.

Or, I wake up at 3 a.m., my hips throbbing, an electric-like pain shooting across my pelvis. My neck is stiff, my leg muscles are rigid, and nerves light up throughout my body. I stand up in the dark because I can’t stand the pressure on my body as I lie on the bed.

And there are the mornings that are merely extensions of the previous night. Those are the hardest, the ones where no matter how many times I change positions or alternate between the bed and a camping mattress on the floor, I can’t get comfortable. I’m exhausted but in too much pain to sleep. Midnight, two a.m., sunrise, all come and go. Eventually I get up, defeated by my own body, and try to start another day.

I used to take sleep for granted. In college, I’d fall asleep on a cheap blow-up mattress and wake up feeling like a million bucks. Before chronic pain, if I said I didn’t get enough sleep, I meant that I’d had four or five hours of rest. Now, those hours are days. My record is ninety-six hours without sleep, and by the time I finally took enough muscle relaxers to knock myself out, I was shaky and cold and thought I might die.

I hate prescription medication. I use vitamin B supplements, sublingual melatonin, and organic tea to try to sleep. But occasionally, on nights when nothing else works, I reach for a bottle of pills. It’s one of the worst kind of defeats—to admit that my body is attacking itself, trying to stay awake through the hours meant for sleep.

I try to look at chronic pain as a test, a puzzle that must be worked with through trial and error until my body and I come up with a livable solution. I exercise daily, often spending an hour working on my core muscles to help alleviate the pressure on my spine. I eat a restricted diet, avoiding sugar and corn and gluten and a lot of other things that seem to inflame my body. I have a pretty good survival system, but chronic pain is a fulltime job. Every bite of food, every push of a heavy door, every reach overhead to pull on a fan—every single thing has to be carefully planned, because a wrong move can leave me debilitated for days or weeks.

Sometimes, when I’m able to sleep, I drift off to lucid dreams in which I’m running half marathons again, or scoring goals on the soccer field, or finishing my first triathlon. They’re beautiful dreams, but because they’re lucid, I know there’s a certain sense of falsehood in them. Willpower and hope keep me fighting through the sleepless nights. I may not be able to run again yet, but I want to, and desire is a powerful thing. I get mad sometimes—a resentful, ugly mad—but I try to channel that anger into healing. Chronic pain owns the mind as much as it owns the body, and staying hopeful that one day I’ll be okay is my way of telling it to kiss my pain-free ass.

 

Goodbye, Lyrica

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

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

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

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

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

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

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

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