When I first started feeling tired all the time, it was easy for me to brush it off. I’m a busy, working mother of two teens. I don’t know anyone in my situation who isn’t tired. And I’ve had achy joints and sore, painful muscles off and on since my teen years, as well as bouts with overwhelming fatigue that no one could diagnose specifically. So I just lived with it.
Several types of illnesses have vague, hard-to-pin-down symptoms: autoimmune disorders, Lyme disease, thyroid disease, and nutritional deficiencies like low vitamin D. The early stages of cancer can also cause symptoms that are vague or easily explained away.
It can be tough to persist in seeking a diagnosis when a doctor explains your aches, pains, and fatigue as “stress” or suggests that perhaps you would feel better if you lost some weight. It can be easy to think it’s all in your head.
What happened to me
This spring, I got hit with the flu — hard — and then pneumonia. Following those illnesses, I never really got to feeling better, and my achy joints and fatigue continued.
At first I thought I was just taking a while to get back to my usual energy levels. But I began experiencing other, more concerning symptoms: a hoarse voice, dry eyes and dry mouth, some trouble swallowing dry foods, swollen lymph nodes in my neck, and most concerning, very swollen, tender lymph nodes in my armpits.
When I called my physician about the swollen lymph nodes, she got me in immediately, and I went through a lot of testing, including a basic autoimmune panel, and a mammogram and ultrasound of my underarms and breasts. I was immediately reassured by the radiologist that nothing looked cancerous, but told that I did in fact have enlarged lymph nodes in my breasts.
My primary care physician referred me to a rheumatologist for further evaluation, but I haven’t had that appointment yet: It’s scheduled for late August. In the meantime, I continued to follow up with my naturopathic physician, who is licensed in my home state of Vermont (not all are; learn more about how to find a complementary health practitioner).
I’d had Lyme disease in 2008 and since then had been working with a naturopath to optimize my health by rebuilding my gut flora (which were destroyed by long-term antibiotic treatment) and making sure everything else was dialed in as far as thyroid function and vitamin D, two issues that popped up after Lyme treatment.
If I’d stuck with my primary care doctor, I don’t know if there would have been a next step. I think I would have simply felt awful for a while longer and waited for the rheumatology appointment.
But my naturopath insisted that I get tested for Lyme in case I had contracted the disease again. Where I live, at the edge of the woods, it’s really easy to get bitten by a tick and not even notice. And it’s all too easy to get Lyme disease more than once.
I went for the test and found out last week that it was positive. (Once you have Lyme your blood will continue to test positive for the disease for months to years, even though the bacteria are no longer present. But I hadn’t had the disease for nearly a decade. There’s also the danger of a false positive result.
I took the results to my primary care doctor, who put me on doxycycline for this new infection, and now I’m feeling better.
What a patient can do
So, if you’re in a similar situation, with vague symptoms that don’t seem to point to anything in particular, what should you do? How can you get around to feeling better and finding out what’s up? Here’s what worked for me:
- Keep a symptom log. You can use an app, a paper journal, an email to yourself, whatever. But tracking symptoms will help you report accurately to your physician, and it will reassure you that this isn’t “all in your head.” And it may turn up some connections you didn’t see before, such as symptoms that flare with your monthly cycle.
- Find a good primary care physician. I know a lot of people who “never go to the doctor.” But the problem is, when you’re feeling sick and don’t know what’s causing it, a good primary care doctor is your first stop. So take the time to ask around and find a good one. Even if you haven’t gotten in for a well visit yet, if you’ve filled out paperwork and set that appointment, they’ll often see you for an illness right away.
- Be persistent. Don’t just go home from your appointment with no answers and no plan. Call again if your symptoms persist. “I’m still not feeling well, can the doctor see me again?” And if your physician seems stumped, try another for a second opinion.
- Don’t be afraid of specialists. I’m keeping my rheumatologist appointment. Just because I have Lyme disease doesn’t mean I don’t have an autoimmune disorder as well. There is a lot more that a specialist will look at and test for, compared with a primary care physician.
- Report family history. It’s important to give as complete a family history as you can, as some diseases have genetic roots, and this can help your doctor narrow in on a diagnosis.
- If you have autoimmune-type symptoms but a rheumatologist says you don’t have an autoimmune disorder, consider Lyme disease. Lyme has been called the “great imitator” because its symptoms are often mistaken for something else. Many physicians don’t even have Lyme on their radar.
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Lauren Arcuri is a freelance writer in northern Vermont. She writes about health and medicine, including neuroscience, microbiology, and genetics. She has written for Pacific Standard, Proto, The University of California, Berkeley, School of Public Health White Papers, and many other publications.