What my fibromyalgia feels like.

While not exhaustive, this post is meant for you – the person who is trying to figure out exactly what’s causing you so much pain, the person who is looking for answers after a fibromyalgia diagnosis, the person who is trying to find better ways to care for your body.

I’m going to try to be as thorough as possible and share what has helped me, but different things can help you. Do your research. Consult doctors and wellness professionals but know that you know your body best. Look into patterns. Keep food and activity journals.

Just like with my type 1 diabetes, my fibromyalgia is a game of data. I have specifically engineered my life – what I eat, my activity levels, my exercise, and more – to gain control of my health. You can too (and no, I didn’t just meant to sound like a motivational poster. I just legitimately know that you got this. It’s hard, but you do.)

On my worst days, noises cause me pain. I’ll hear a car horn blaring and it feels like every nerve ending in my body has been set off. I’ll try to tense and release my muscles – my calves, my thighs, my forearms – as a distraction, but it’s like the sound waves are reverberating through my body and there’s nothing I can do to stop them.

On my best days, it’s like I’ve never been sick. The human brain is a wonderful thing and tends not to hold on to pain if we train it to do so. People will ask me how often I have pain flares and I can cheerfully answer, “Oh! Not more than, I dunno, once every few months? It’s not awful.”

In reality, I have pain and inflammation flares once every few weeks. Some are worse than others. Sometimes I’ll just wake up with pain – a lulling ache in my muscles, sharp pains in my joints and the typical fibromyalgia pain points (all of which flare for me) – feeling foggy and lethargic, my brain chemicals doing everything but helping my mood, but my symptoms will level out by midday and I’ll be back to feeling like myself. Sometimes the flare lasts a month or more and I’ll be working from bed most days, willing my joints to stop feeling like they’re on fire, avoiding eating for as long as possible because anything I consume seems like it sends me into further inflammation.

That’s the thing about autoimmune and inflammatory diseases – there’s not much we can do to track them. There’s not usually a THIS-happens-every-week-at-THIS-time. It’s hit or miss. It’s crossing our fingers, hoping it doesn’t happen again. It’s doing absolutely everything we can to not send ourselves into a flare, with extensive morning and evening routines, diet and exercise plans, water intake charts, wellness professional appointments and more, designed just to make sure we stay at the level of ‘okay’ that healthy people get to enjoy.

But I think what is important to remember is these three key things:

  1. Like with every disease, every single case of fibromyalgia is different. What sends one person into a pain flare will be fine for another. Your body is unique, and how your body responds to the many factors that affect inflammation and immune response is going to be different to how mine responds. Fibromyalgia is already a disease that not every doctor trusts is real, which is exceedingly frustrating. Living with pain is debilitating and mentally exhausting. Being kind to each other and ourselves is vital.
  2. You are the expert. Only you can know what’s going on with your body. You live with it every day. Pay attention to how your body responds and you can learn how to give it what it needs to feel its best.
  3. And most importantly, a Fibromyalgia diagnosis does NOT mean you will have to deal with pain every day for the rest of your life. The end goal here is managing your symptoms – and their root causes – to the point that they aren’t an every day occurrence. Will you have flares? Most likely. Is this a short path? Absolutely not. Especially when you are first diagnosed or start noticing these issues, it’s going to be a long road of learning about your body before you get to the point where you’re feeling like yourself again. But long isn’t never-ending. You will have to be resilient. You will have to be courageous. But you will learn how to best care for your body so you can feel your best.

My Diagnosis Story & Timeline

I’ve had type 1 diabetes (an autoimmune disease) since I was 10 and dysthemia (a form of chronic low mood) since I was about 12. For the last four years, I have struggled with food allergies and intolerances and, because of my existing autoimmune disease and symptoms, I most likely have Celiac disease as well (I’ve been avoiding more diagnostics tests because honestly? They’re exhausting. I’ll get to it).

All are autoimmune and inflammation related, so it can be hard to say when my body kicked in with fibromyalgia too. Many of the symptoms of fibromyalgia overlap with symptoms of when my blood sugar is running high, or when my brain chemicals aren’t in proper balance.

Here’s what’s helped – I tend to see my body as a whole entity that is affected by an immune system that is constantly on the attack and highly sensitive to inflammation. Instead of paying attention to each of my diagnoses separately, I look at my entire body as a cohesive system. Anything I can do to help my body manage inflammation will help everything  – my blood sugar, my pain levels, my mood, my energy, etc. – so that’s what I’ve focused on for the past few years. I’ll outline exactly how I do that below.

Diagnostic Tests & Doctors

My official diagnosis came in the summer of 2016. I had been experiencing an atypical amount of pain and blood tests showed two incredibly odd things – my CK levels were consistently above 650, and my ANA Titer was 1:2560. These were each consistent over the course of several tests by several different labs.

Your Creatine kinase (CK) levels indicate muscle damage and inflammation – one high test could be the result of a tough workout or an accident of some sort (a car accident, falling off your bike, or some other kind of impact on your body), but multiple high tests over time can indicate a degenerative muscle disease or some other issue.

The Antinuclear Antibody (ANA) test indicates that immune antibodies are present. One high test doesn’t necessarily indicate an autoimune disorder, but multiple high tests over time indicate that the immune system is in “fight mode.”

However, multiple other tests could not confirm any of the typical autoimmune diseases that would typically correlate with such a high ANA or CK level. Lupus, Lyme disease, Rheumatoid Arthritis, Muscular Dystrophy, heart issues, and countless other obscure autoimmune diseases were ruled out.

We knew that my immune system was in massive fight mode and my muscle fibers were breaking themselves down, but we couldn’t figure out the root cause. Of course, type 1 diabetes is caused by the immune system turning on itself, but I was diagnosed almost 20 years ago. My immune system should have been well into “never mind, we did our job” mode, however badly of a job it did when I was 10.

My endocrinologist, who treats my type 1 diabetes, sent me to a rheumatologist who, after more tests, did another run through of my symptoms and the fibromyalgia pain points. At this point, she diagnosed me with fibromyalgia (which can only be diagnosed after everything else is ruled out) and offered to start me on medication, which I declined.

Prescription Medication

My body and I have a very complicated, but very close relationship. Living with chronic disease since I was 10 means I am acutely aware of every little change my body is feeling. Because I’ve spent SO much time cleaning up my system, and just purely because of how my body works, with any medication I will have the negative side effects that “sometimes” come with it about 99% of the time. Heavy duty pain medication, allergy medication, antibiotics, etc. – they all mess me up severely. As such, I have to be FAR at the end of the very last rope I have to consider taking additional prescription medications (I currently take insulin via an insulin pump for my type 1 diabetes, and recently started back on hormonal birth control pills after A LOT of back and forth, but that’s all I take).

There are medications for fibromyalgia and just because I chose not to explore that route, it does not mean it won’t be appropriate for you. Work with your medical team, pay attention to your symptoms, and take care of your body. That comes first.

No one else gets to judge what’s right for you except you. 

Either way, make sure you are working with a medical team that respects your wishes. I have fired a lot of doctors in my lifetime. I’ve found that unless my care team and I are on the same page about how I choose to take care of my body, I end up belittled and bullied into doing what they think is best, and that’s not okay. Conversely, when I find care teams who respect my wishes and how I choose to take care of my health, we find solutions we’re both comfortable with, and my health outcomes are always significantly better.

Acupuncture

Because traditional medicine’s only solution to my fibromyalgia diagnosis was medication that I chose not to take, I started doing research and speaking with other people I knew who lived with fibromyalgia. My coworker, who also lives with Graves disease, kept going ON and ON about how much acupuncture had helped her.

Full disclosure – I am terrified of needles. I hate them. Despite having 6 tattoos and having lived with a chronic illness that requires shots for the past two decades, I tend to pass out when I get my blood drawn. So the concept of tons of needles getting stuck into my body was not one I was comfortable with.

However, I was nearing the far end of that rope I mentioned earlier, so I decided to try it.  It took about 3 appointments before I started feeling the impact of the visits and then all of a sudden, the tides changed. I started getting my energy back. I started sleeping through the night. My mood improved. I felt like myself again. Acupuncture, for me personally, has been the number one thing that has helped me feel better. 

My acupuncturist’s name is Wilton Valerio, and he is a gem. He is my most consistent New York City relationship, and if you live here, you know how much that means. I’ve seen him at least twice a month for the past 10 months and up my visits to weekly if I’m going through a pain flare (which usually happens after I’ve skipped a few appointments because #NewYorkSchedule or been running myself too ragged with lack of sleep or poor nutrition). He is magic in human form.

I found Wilton from pouring through Yelp listings and reviews. I recommend being thorough in your search, as a subpar acupuncturist can turn you off for life, but a great Eastern medicine practitioner can change the game for you.

Just try it. Yes, it’s going to be weird the first few visits. No, you won’t be magically cured after two weeks. But everyone I’ve spoken to who’s tried acupuncture consistently (alongside cleaning up diet and drinking enough water – because those are IMPORTANT) has noticed massive changes. Jump in.

Nutrition/Diet & Water Intake

I cannot stress the importance of eating well enough. *One more time for the people in the back.* I CANNOT STRESS THE IMPORTANCE OF EATING WELL ENOUGH. There are three major eating rules when it comes to eating to manage fibromyalgia pain:

  1. Your food is your fuel. The more great nutrition you pack into your system, the more tools you’re giving it to do what it needs to do. Your body cannot run on no nutrition; produce and lean protein are your best friends. A lot of people get really overwhelmed by what they need to cut out when they start a clean eating journey, but I challenge you to think of it like this:- The “treat” you’re about to put into your mouth – the french fries or the ice cream or whatever else – are however they’re going to make you feel later worth the few minutes of taste now? For me, white potatoes make my joint pain flare for three days. No french fry is worth that, however damn good the things are. Keeping that perspective has been really helpful whenever I pass my local McDonald’s.

    – Focus on all of the great things you do love to eat. I LOVE fresh fruit. Cherries, mangos, strawberries, raspberries – they make me happy. Whenever I see great summer fruit in the store, I grab it all. Then of course I don’t feel like carrying tons of other bags of groceries, so there’s just not room for the other crap food. Focusing on the great things you love to eat will eventually just crowd out the stuff that doesn’t fuel your system properly.

  2. Eating to manage inflammation is key. One of the absolute best things I ever did for my health was to dive into the Autoimmune Paleo Protocol. I no longer eat by these guidelines to the letter because I’ve learned what works for my body, but the basic guidelines still guide my diet. It was an excellent starting point and I recommend it for anyone going through a health issue, because managing inflammation is ground zero.
  3. Drink. More. Water. I drink about 90oz or more of water per day, and I really feel it when I’m drinking less. My muscle and joint pain flares like crazy when I’ve not been helping my body out with this crucial step. Your body cannot flush inflammation out without water. Your brain cannot function and process brain chemicals properly without water. You cannot digest food properly without water. Get yourself a 32 oz reusable water bottle, down at least three a day, and it will make a massive difference.

Now, I don’t have the energy or creative brainpower to cook multiple meals a day and as much as I tell myself it’s going to happen, meal prep Sundays are just never going to happen. So I also lean heavily – and have for three years – on Isagenix’s line of dairy free shakes, bars, vitamins, and cleansing supplements. I love the stuff and will stand by it to the end of time, so I am an independent distributor. It’s also helped me lose 40+ pounds, a large portion of which I gained when I didn’t know what the hell was going on with my body a few years ago. If you’re interested, you can find more information here.

Exercise & Daily Movement

The last thing you want to do when your body feels like hell is move it. You’re already in pain and exhausted; how on earth are you supposed to go throw some weights around, right?

But trust me on this one – pushing through the first few days and weeks of it being extremely hard to move will make a massive, noticeable difference. Walking daily and taking 10-15 minutes to stretch before you go to sleep is enough to start with. As you’re feeling better, working up a sweat for at least 15-20 minutes a day can make a world of difference.

The key is doing it DAILY. It will help your muscles become more limber, help your body redistribute all that water you’re drinking, and up your good brain chemicals. Personally, I love high intensity interval training and I’ve found that once I get going, my body can do more than my exhaustion and pain would have me thinking. I love the Nike+ Training Club app for at-home workouts.

Sleep

I think one of the most unfair parts of fibromyalgia is the insomnia. You’ll have a whole day where you do everything “right” – you ate well, you drank water, you had your acupuncture appointment, you managed stress, etc. and then you get into bed and sleep just won’t come. Then the dread sinks in, knowing that your lack of sleep tonight is going to lead to further brain fog and pain tomorrow. It’s a tough cycle. Here’s a few things that helped me:

  1. Screens, off. I try to turn off all my screens at 9pm so by the time I need to actually fall asleep, my brain has been able to disengage a bit. I like to use this time to read, journal, take a bath, do some light straightening up around my house, or lay out my clothes and such for the next day.
  2. Stretching. Light yin yoga or just your everyday, basic slow stretching for about 10 minutes really helps slow me down, stretch my muscles so they’re not tensing up as I’m trying to fall asleep, and signals to my brain that we’re trying to kick things down a notch.
  3. Sleepy-time tea. I honestly haven’t looked into the herbs used in sleepy-time tea, but there’s something about a warm beverage right before bed that gets me a bit lethargic. Plus, it’s a good way to get some extra H20 in my system.
  4. Magnesium and herbal supplements from my acupuncturist. In a small amount of studies, magnesium has been shown to decrease cortisol levels (the stress hormone that your body uses to wake you up when needed, etc.). There honestly isn’t a whole lot of peer-reviewed science behind it, but it seems to work for me, so I’ve been sticking to it.
  5. Meditation. I downloaded some free meditation tracks (my favorite are these, because they incorporate these little barely noticeable soundwave pulses that I find extremely calming and zen-state inducing), and pop in my earbuds for 15 minutes before I go to sleep.

Weather

Absolutely, weather affects me. My sweet spot is 70 degrees, sunny, and dry. Because I live on planet earth, this is an extremely tough thing to find year round. During the winter, I focus on immune system building foods and supplements. During the summer, I focus on cooling foods, i.e. seasoning my food with rosemary and thyme, consuming water-packed fruits like watermelon and cantaloupe, and not doing hard exercise during the hottest parts of the day. My body runs hot anyway, so anything I can do to keep it cool, hydrated, and flushing out inflammation is key.

Work, Daily Schedules & Travel

Perhaps the most important part of this whole fibromyalgia journey for me has been fiercely protecting the energy I do have. I was able to create an agreement with my job where I only go into the office once or twice a week. I work for a health-focused non-profit, so I get that I’m extremely privileged here, but do understand your rights. I don’t personally like classifying myself as such, but fibromyalgia does count as a disability that needs to be accommodated under the Americans with Disabilities Act.

In the U.S., a job is supposed to accommodate your health needs as long as it does not interfere with the requirements of the job you were hired for. For many of us who work desk-based jobs, your work can technically be done from anywhere. Telecommuting is becoming more and more common, and there’s no way of knowing whether or not it’s an option for you unless you ask. Do be prepared to make a business case for yourself, and do keep EVERYTHING in writing. There are some tips here that can help.

I am also very transparent about my health, which has helped my friends and family better understand that when I bail on plans or become a bit of a hermit for days or weeks at a time, it’s not about them. It’s about taking care of myself and my health.

There’s some mourning that happens there. I want to be out and about with my friends. I want to take advantage of the fact that I live in New York City. I want to jet set and stay up all night to watch the sunrise, but none of those things support my health and well-being. Instead, I negotiate with myself a bit.

I know I can’t be out every night and expect to survive the week, but I do know that I can manage about one social activity during the week and usually about one on the weekends. I prioritize. I say “no” to A LOT. But it means that I end up getting to do the things I actually want to do, and let the fluff fall to the side.

Traveling can be particularly hard for me, so I do as much as possible to make it go smoothly, and I build in a lot of rest to my itineraries when I can. For work travel, this can be hard. But again, being transparent about my health has been extremely helpful. My coworkers know that I can’t do group dinners every night, and that I have to take some downtime.

If we’re lucky enough to be in informal meetings or staff training, I am good for finding the couch in the back of the room and going horizontal while remaining engaged. Communicating why I’m doing what I’m doing and not asking for permission, but telling people that this is what I need to do for my health is key. Will you get some side-eyes? Yup. But you’ll increase the amount of time you can actually be present and participating, and that’s super helpful.

Anything I’ve missed? Drop a comment below and I’ll keep adding to it!

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