Thru hiking with fibromyalgia and what its taught me about mind over body

What is fibromyalgia?

When I tell someone I have fibromyalgia their face often draws a blank, including medical professionals. There is still little known about the condition. The medical definition of fibromyalgia is wide set chronic musculoskeletal pain along with extreme fatigue, brain fog, depression, insomnia and GI issues. I was finally diagnosed by an anesthetist in early 2023 but I had been struggling with this condition since 2015. In 2013 I had almost died and was hospitalised for a week from the worst case of glandular fever (mononucleosis) that the doctors had ever seen. There are many long term affect’s of having this so badly and the older you are when you get it the worse it is. In the long run it left me with hypothyroidism and the chronic pain which I would later get given the name of fibromyalgia.  Fibromyalgia along with many other conditions is an invisible illness. 

How did this happen to me?

The pain started in my upper back, neck and shoulders before slowly spreading to wide spread inflammation over my whole body. Over the course of 5 years I spent a fortune on seeking alternative practises- chiropractors, physiotherapists, acupuncturists, Chinese medical doctors and osteopaths. I spent hours doing yoga, exercising, applying heat treatments, swimming, anything that was suggested to me; I tried. At one point I even wore a back brace that a physio made for me. Often the specialists were confused by the source of the pain. I have good posture, I exercise frequently and I don’t work a desk job.  I remember the day I sat in the doctor’s office crying and crying about how isolating it is to live in chronic pain, how nauseous the continuous pain would make me. How some days my joints and muscles were so inflamed I could hardly walk and function at work. I did all this whilst holding down a full time job and social life. On the outside nobody knew what I was going through. On the inside, the pain isolated me from the rest of society and shrouded me in a darkness. I didn’t understand. I was doing everything right; daily yoga, eating healthily, low to no alcohol, frequent exercise. When I finally got prescribed painkillers and some other medication’s for the dark days of unbearable pain, these gave me a life line and enabled me to live a normal life. Some of these meds have a very bad reputation for obvious reasons, but for me with careful use they can allow me to go to work, function as a normal member of society and remove some of that isolation of living in pain. 

How does fibromyalgia affect me being able to thru hike?

First, I have to make sure I have my necessary medications and supplements with me at all times. This can obviously affect my base weight (but they’re consumables!). I put my morning and evening pills and vitamins into little pill bags whenever I stop to resupply or a town day. It means when I wake up in the morning, much like having a a pill box next to your bed, I just open a packet and swallow some pills. It makes it easy for me to remember to take my daily meds. The non prescribed supplements I find help the most are tumeric, magnesium, glucosamine, zinc and evening primrose oil. Heavy right? When I’m hiking I either order online from amazon or stock up at the grocery store. I usually keep some in my bounce box and only carry a couple of weeks worth. This makes me resent having to take them less.

Some days on trail are harder than others. I find my fibromyalgia can get very much affected by weather. Cold, wet conditions make it flare up. The damp makes my muscles ache like crazy. Humidity is much harder than dry heat (dry heat is actually the best thing for it- one of many reasons I love the desert!) Humidity gives me bad brain fog. Hiking the Appalachian Trail wasn’t easy for this.  On bad days, especially days when I’m struggling with PMDD (Premenstrual dysphoric disorder) the inflammation in my body can become unbearable. Everything will feel heavy and sore like I have the flu and the brain fog and fatigue will be so unbearable I often just need to put up my tent and sleep after 5 miles. I have to be kind to myself on those days as often I feel angry that I’ll loose all my trail friends because my body is not as strong as there’s. When people say listen to your body, this is what they mean. I’m not going to be able to do 30 miles a day consistently but when I can do those miles, oh it feels so sweet! It a big part of why I have little routine and average mileage per day on trail. I just have to take advantage of my body when it feels strong and rest when I don’t. 

In town I try to always book a motel room with a bath tub, or I may need to seek out a masseuse. Massage has proven to be the only treatment which works and in the real world I tend to get either a Thai or sports massage every couple of weeks. This is something that fellow fibromyalgia goddess Lady Gaga also does! In the western world massage is seen as a luxury, but In the East it is seen as healthcare and has proven to be more affective to me than anything else. Taking baths or getting massages on trail may be seen as a frivolous luxury to many people, but these are things that help me stay on trail, that help me achieve my dream. 

I try to be as lightweight as possible, especially on the Appalachian Trail to take as much pressure off my joints. I’m also hyper mobile and sometimes loose control of my limbs and fall over a lot! I do use a lot of caffeine to try to fight the brain fog and fatigue but honestly sometimes nothing really helps it and I’m just stumbling down the trail in a daze. 

Exercise helps me so much. It helps my brain fog, it makes my muscles strong, lowers inflammation, makes my mind healthier. In so many ways thru hiking can be great for fibromyalgia / chronic illness. I was always active before I developed this, and I refuse to let it stop me from doing things I want to do. 

Why am I sharing this?

I want other people to know that hiking with chronic illness is possible. It is hard to not compare yourself to other people. When I see people achieving FKTs or a CYTC I have so much admiration and awe for them, but I also have to accept that as cool and inspiring it is, it is unlikely something I can do in the same way I have come to accept that I do not have the typical structure or body of an athlete. I do not have the tiny toned waist or small breasts that female athletes are stereotyped to have. I cannot run because my inflamed and hyper mobile joints can’t handle it. I was not good at sports at school. Nobody ever picked me for their team. People do not look at me and think that I have hiked across the United States twice and about to attempt a third time. If you are reading this and you wonder if you will ever be strong enough, or healthy enough to attempt a thru hike, you can. It’s just harder for some people than others. Hiking is just walking really but thru hiking is having a mindset strong enough to keep going even on the hardest days. Mind over body. 

You can follow my journey as I prepare to attempt the Continental Divide Trail this summer on instagram.