The Importance of Doing Your Own Research on Your Condition

Dear “spoonie” friend,

We need to talk.

I know you’re frustrated and feeling hopeless. I know you feel like your doctor doesn’t understand you. I know your medical bills are piled up at the corner of your desk collecting dust.

We’re taught that doctors “care” for you when you’re sick  –  but what happens when you’re always sick but not “sick enough?”

You go to doctor appointments and tell them, “I’m in pain all the time, I’m tired for no reason, I can’t do these things I used to do and I can’t do my normal daily activities,” but they look at you perplexed when the basic metabolic panel they ran comes out “a little low, but nothing to be alarmed about.” You’ve lived in this body for how many years? You know something is wrong. You know it deep in your core.

But they ran “all the tests,” which isn’t actually “all the tests;” it’s just a few that the doctors run because otherwise it would cost tons of money and your insurance doesn’t want to pay for all the tests  –  only the ones they think are “medically necessary.”

“Your tests came back. Everything looks fine. You just have fibromyalgia,” they said.

Do you know what fibromyalgia is?

Maybe you’ve heard of it from that one commercial where they say it’s “caused by overactive nerves,” or your friend’s mom has it and lays in bed all the time or you’ve seen it joked about on one of many medical television shows like House MD.

Am I right?

Then you have nearly the same level of understanding of my chronic condition as my primary care doctor.

One day, I asked my PCP what caused fibromyalgia. They’re my doctor, I thought. I’m sure they can explain the medical cause of this awful, chronic, debilitating pain to me. After all, we still have 11 of our 20 scheduled minutes left in this cold, white room.

“I’m not really sure. It seems like you know more than I do.”

There it was.

I finally got it.

This whole time, I’ve gone to doctors expecting them to be experts on – well, everything. But they aren’t, and that’s OK.

Then I changed my expectations of what it means to “go to the doctor” as a chronically ill patient.

Now, I do my own research.

I learned about how the human body works, how bodies process food, how the brain works, what neurotransmitters are, what causes my body to shift “out of place,” how anxiety affects pain, what “psychosomatic” means, what “meninges” are, the purpose of organs and nerves and muscles and fascia, what vitamins do and all of the theories about what causes my condition as well as all of the symptoms, theories, supplements, medications and treatments I can do to manage my condition.

Here’s my advice: be your own advocate.

I know you already research what kind of make-up to buy, what kind of restaurant you’re going to, what book to read next. Instead of spending all of that time scrolling endlessly through Instagram, how about learning about the body you inhabit?

As you might be aware, person-already-on-the-internet, there is so much information on the internet  –  both from medical professionals and medical researchers as well as personal anecdotes about diet, exercise, supplements and everything in between. We are so fortunate to be alive in this time where we can learn about our own conditions and educate ourselves. The answer to your condition might not just be one small pill.

I know that’s tough to swallow because that’s what insurance companies and commercials on TV and our doctors want us to believe, but this might not be true. Maintaining health, especially when you’re already chronically ill, isn’t just swallowing a pill  –  it’s a holistic, lifelong journey full of trial and error.

Here’s an example: I see an amazing chiropractor in the Seattle area that specializes in fibromyalgia patients. She routinely runs my blood work to check my Epstein-Barr antigen levels because I asked her to. Today, I asked her to check my vitamin B12 and vitamin D levels, because I know a deficiency in those two areas can worsen my fatigue and many of my fibromyalgia symptoms. She agreed to run the test because I asked for it. I supplement with methylated folate (because I have a MTHFR mutation) and vitamin D because #Seattle.

If none of that paragraph makes sense to you, then here’s my challenge for you:

Learn about your condition, learn about the human body, learn about food and diet, be your own advocate for your health and never, ever stop learning.

Here are my top 10 tips for learning how to manage my chronic illness:

1. Track your food. Try different diets. Paleo, AIP, Ketogenic, lots-of-veggies-and-no-processed-food, vegan/gluten-free. Try eliminating foods. Get a food sensitivity blood test. Pay attention to how you feel.

2. Learn about what kinds of supplements might help or exacerbate your condition.

3. Join a Facebook group for your condition. Don’t read the sad posts.

4. Learn about the root cause of your condition.

5. Read about mindfulness.

6. Meditate.

7. See a therapist to talk about living with a chronic condition.

8. Got a job? Learn about workplace accommodations for disabilities under the ADA.

9. Reduce your stress.

10. Lastly, and most importantly :  go on a walk, even if it’s just five minutes. Memorize Newton’s first law of motion: an object at rest stays at rest. An object in motion stays in motion.

I don’t need a doctor to learn or read about or validate my illness. I need a doctor to trust me and work with me so I can manage my condition well enough to be able to live my life.

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Thinkstock photo via  moodboard.


Woman wearing sunglasses, smiling by ocean

How I Balance My Emotional and Physical Well-Being With Fibromyalgia

I struggle every day to be compassionate to myself. I know emotional and mental stress increase my physical pain, yet I struggle, sometimes chiding myself for all the things I can’t do.

While I’m good about listening to my physical body, taking care not to overdo so that the pain stays semi-tolerable, I’m less than patient and considerate with my emotional self. It’s sometimes hard being compassionate when I find nearly anything I do ramps up my constant headache. Or by doing what should be an everyday activity, like grocery shopping or running errands, yet it lays me down to recuperate for days after. I can be in the middle of a store, getting shit done, and feeling proud that I’m contributing to my family in a real way, then bam! It’s like I’ve hit a brick wall.

I feel overwhelmed by fatigue, my headache skyrockets, my legs ache all over, and my brain thoughts become jumbled. Not being able to live up to my own standards leaves me with strong feelings of inadequacy…of not feeling that I’m enough.

I’ve learned that pacing myself is a big must do! My body typically can do one “event” per day. So, I can either clean bathrooms or go to pilates, I can either vacuum the house or attend book club. But if I push myself and do two events on one day, I pay for it for several days following. Coming to terms with having to carefully choose my activities each day sounds ridiculous, even to me, yet if I don’t I’ll be laid up and soaking in a hot bathtub several times in one day to reduce the flare.

Because I realize how closely linked emotional well-being is with physical self, I’m trying to be my own best friend. I’m trying to get to a place where I don’t feel like half a person because I’m no longer reliable, unable to keep far too many appointments. There have been too many years now I don’t recognize myself compared to the person I used to be – running my own event coordination business, being actively social, and volunteering my time philanthropically.

It’s tough not being invited to social events any longer with girlfriends I used to hang with. I used to breakdown crying when I’d see photos of girlfriends gathered in celebration on Facebook and realize I wasn’t invited again. Yet I kind of get it…They have probably grown tired of me having to cancel last minute so have given up inviting me altogether. Or the invitations are no longer extended because I haven’t reciprocated.

I’d love to host a gathering, but the fear of not being able to do the prep beforehand, plus host for hours, scares the daylights out of me. What if I become so stressed about hosting that it brings on a migraine and I have to cancel last minute? I feel my face burning with shame just thinking about it. The truth is, with fibromyalgia and constant headaches with migraines, I don’t know from one hour to the next how I’m going to feel so it’s hard committing to or planning anything.

Being in constant pain makes me feel like I’m always in crisis. Always having to hover over myself to make sure I don’t over do it, or that I’m moving my body enough but not too much because that’ll send me spinning out of control towards a flare up and/or a migraine. And being in crisis makes me feel like I must focus first and foremost on my own well being…It feels like a constant fight for survival.

I’m guessing a therapist would tell me to recognize and then accept my boundaries. To accept that my former life is no longer and this is the new me. I have no doubt anyone with chronic pain would argue that getting there is the hard part.

Is it as easy as, instead of focusing on what I can’t do, I focus on what I can? Feel even more grateful for what I have in my life? I have a loving, understanding, and supportive best friend who happens to be my husband of nearly 40 years. And an amazing, smart, adventurous daughter who is my other best friend. And then there’s the awesome puppy therapy. I have two – one is a nearly 16 year old Jack Russell and the other a 6 month old sweet little bundle of energy, who helps keep me moving everyday. I’m incredibly grateful for my entire family, and a few close friends who check in from time to time.

Life is constantly moving and changing, and I’m trying to move and grow with it, taking necessary time to be gentle with my soul. Because I know that my overall well-being begins and ends with me caring for, and being extra kind, to myself.

Follow this journey on Fibro Brave.

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Woman texting outside on a bench.

How a Text From a Friend Helped Ease the Guilt of Fibromyalgia

I think chronic illness of any kind really makes you appreciate the friends in your life who’ve stuck around, those who didn’t turn around and run away from you and your condition – all because they didn’t know how to handle it.

One of my friends reminds me of the Energizer Bunny. She just keeps “going and going.” She has a busy life, being a mother to two young children under the age of five.

One day, she asked if I would be available to pick up her son from Pre-K in case she was running late after spending the morning with a friend in the hospital. At first, I agreed. But as the morning progressed, I realized I was in the middle of a fibromyalgia flare and the only thing I needed to do after work was collapse onto my bed.

There was no way I was going to be able to stay awake long enough to pick up her son and keep him company until she arrived.  So, with a guilt-ridden conscience, I cancelled. She was so understanding, as she always is, and simply found someone else to be on stand-by.

For days after, I felt so guilty and upset at myself for having to cancel. I started to think she was mad at me for being so unreliable or maybe she thought I was a flake. Deep down, I tried to convince myself otherwise, but this fibromyalgia minion messes with your head in ways healthier people can’t understand.

A few weeks later, she texted me just to see how I was doing. We got to talking and I mentioned how I was now a published writer on The Mighty. She was so excited and immediately asked to read one of my stories. I sent her the link and waited to see what she thought. She loved it!

As excited as I was to get positive feedback, what really touched my heart was her appreciation for my article. She told me how glad she was I wrote my piece, because, up until then, she didn’t always understand what I go through. Now, she could understand just how hard it was for me to sleep with fibromyalgia and since she loves to sleep, she could really sympathize when I had bad nights. Her next text warmed my heart even more. She told me I could always talk to her about the bad days, because that’s what friends are for. She even offered to help me out any way she could.

This really made me feel good because most of the time I feel invisible. I can sit in a room full of people and feel alone, like people only stop and talk to me because they’re waiting for someone better to come along.

I see how easy it is for others to make friends and engage in conversations that seem so exciting and funny. And there I sit, hoping someone, just one person, will reach out and make me feel visible.

While I do have a few friends in my life that know about my fibromyalgia, it’s not always easy to be so straightforward about my struggles. Even though I’m aware people can only help when they know what’s going on, that’s a lot easier said than done. So many times, I just put on a smile and say I’m “OK.” It’s easier than offering someone a glimpse into my life just to be told, “Oh, that’s nothing,” or, “You’re too young to know what pain is,” or any number of self-esteem crushing comments.

To have a friend be so supportive, so non-judgmental and take the initiative to offer help is something I will always cherish. Her texts helped me remember that not all people will look down on my condition. There are kind-hearted people out there who still know the meaning of the word “friend.”

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Thinkstock Image By: m-gucci

woman lying on bed with cleaning supplies on table

The Exhaustion of Cleaning When You Have Chronic Fatigue

I’m sure if you ask anyone who has ever lived with me, “Is Louisa a clean and tidy person?” they would probably laugh in your face and roll their eyes in a comedic fashion. I’ve never been a naturally tidy person, but that doesn’t mean I don’t want to be and, after living with an assortment of housemates over the years, I like to think I developed some skill at being mindful of mess. I now live by myself, which definitely has its positives. You don’t get in to arguments about whose turn it is to clean, there aren’t passive aggressive Post-Its on various surfaces or your belongings don’t magically reappear in your bedroom.

I am actually very house-proud (yep, just heard some more laughter).

As someone with chronic fatigue and fibromyalgia, the act of cleaning and tidying has, once again, become an alien concept to me. I envy those whose cleaning habits are second nature to them. I love having everything clean and in order, but it’s just not something I am capable of doing on a regular basis. Instead of arguing with others, I’m arguing with myself about the mountain of laundry in my bedroom, the grotty plates in the sink and the grimy fluff building up in the corners of the walls. I feel disgusted and ashamed.

After a while, I just can’t take it anymore. I shlep out of my sick bed and I clean everything in sight. Afterwards, I return to my bed where I spend several hours/couple of days recovering and lie there cursing myself for cleaning everything at once. What would make more sense is doing it all in bite-size chunks — laundry one day, washing up the next, etc. However, for some reason, having one thing clean and other things dirty gets on my nerves and I feel I can’t leave all the other stuff. It’s very frustrating. I feel like my body and brain are in constant conflict with each other over this.

Now, I’m going to make a pretty revolting confession here… I hardly ever bathe or shower. I go four to five days without going near water unless it’s to wash my hands. Once again, I am completely and utterly ashamed of this. It’s not because I don’t want to keep my body clean — far from it. I have always been fastidious about my personal hygiene, in particular my teeth cleaning. However, my body tells my brain “er, nope.” Body usually wins this battle. The whole process of washing is incredibly tiring and draining. Just the thought of getting in the shower feels like I’m about to climb Mount Everest. Standing for a few minutes can be excruciatingly painful. Dizziness and nausea also like to put in an appearance. Plus, it’s all the other things that go with it… undressing, lifting arms up to wash hair, redressing, blow drying hair. Oh boy! Don’t get me started on hair drying. I consider it the most boring and difficult life task and, no matter how thorough I am, I always seem to miss a huge nasty wet patch which clings to my neck for the rest of the day like a hairy limpet.

My lack of personal hygiene ultimately leads to me canceling plans with people. I then feel isolated and that I’m letting people down. I don’t want my friends spending time with Pig Pen from “Peanuts,” I want them to see the person I know I can be — squeaky-clean, freshly-made-up, hair-did-Louisa with a beautiful grown-up tidy flat. So, really, my lack of enthusiasm to socialize is actually a public service.

I don’t choose to be messy and smelly, my illness forces me to be. It doesn’t mean I’m lazy or gross (not intentionally, anyway) it’s just yet another unhelpful side effect of chronic fatigue. I hope people who know me well enough know that it’s not who I really am.

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Thinkstock photo by 6okean

Close up of woman hands holding a pills.

When I Debate Whether or Not I 'Really Need' My Pain Medication

I often wonder why we as a society seem so hesitant to take pain medication. Whether it’s a tendency to suffer all day with a headache because you don’t feel justified in popping some Advil yet, or hesitating to ask a doctor for pain medications for fear of being labeled a “drug seeker,” why does it feel so embarrassing to admit that you need medication to treat chronic pain? I just wonder where this fear comes from.

Do we resist pain medication because taking a medicine means admitting that something is wrong? Are we so obsessed with being fit and healthy that taking medicine is like admitting failure? Or is it somehow a fear of our own mortality that we won’t face? That having an illness requiring medication means we aren’t in the prime of our life like we wish to be? Is it a societal fear? Do we fear being judged because we are taking a medication? Or are we more afraid of ourselves? Afraid of becoming “hooked” on medications and then craving them?

When I was in high school I used to volunteer at the emergency room, and I’d hear the terms “frequent flyer” and  “drug seeker” fairly often. I never wanted to be “that” patient. The one who got written off as needy or argumentative. I didn’t want to be the one they dismissed as quickly as possible because they didn’t have any “real” issues.

Is it any wonder that I’ve had a hard time asking my doctors for pain medication? Even after being prescribed medicine, I tend to be afraid to take it too often. What will my doctor think if I ask for too many refills? I hate prescriptions that are written “as needed;” well, how often does my doctor think I need this medicine? Does she think I’ll take it once a week, once a month, more or less often? At what point will I hit the threshold where they will stop listening to me, stop caring, write me off?

I feel that any person with a chronic illness has probably been in my shoes. I debate taking my pain medicine, even though I’ve been tethered to my heating pads for days in too much discomfort to move around much. I debate whether or not I should take the medicine the same way that I used to debate whether or not to call in sick to work.  Is the pain really “that” bad today? Maybe I should just try to power through it. How much do I really need the pain medication? (Should I even use the word “need” or does that sound bad?) Even writing about it seems odd to me, as if somehow admitting that I have pain medications prescribed to me is somehow embarrassing. I’ve taken a muscle relaxer the past two nights to try to calm down the cramping pain enough to sleep — is it OK if I take it again today? I never take the maximum dose of my medicines, or if I do I try to avoid taking them more than once a week or so. I’ve had some bad flare-ups that meant taking my medicine for multiple days in a row and I ended up feeling guilty. It’s almost as though taking the medicine is a sign of failure, admitting defeat or weakness. Why can’t I just toughen up and power through the pain?

Then I wonder why is it such a big deal? I have fibromyalgia which means I’ll likely be living with this pain the rest of my life. And yet I still can’t accept that I take pain medication. I take multivitamins every day, and no one questions it (in fact, they tend to encourage it). I take medicine for my allergies and for acid reflux and no one bats an eye. I’ve accepted that these are medications I’ll be taking daily for the rest of my life, so why am I so embarrassed to take my pain medicine when I need it? Doctors happily treat my other illnesses (allergies, acid reflux, etc.),  so why should treating my chronic, endless pain be any different?

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Thinkstock photo by Liderina

16 Side Effects of Fibromyalgia I've Kept Secret From My Friends

I can’t stress enough that one of the most effective ways of managing my condition is by keeping a poised and positive mindset. This has taken years of practice and focus to achieve. While some have shared their opinion that this attitude is unrealistic or disingenuous, for me it’s the key to success.

In past posts, I’ve also shared with you that I choose to eat a vegan diet 90 percent of the time. I use this same ratio for my mindset. For 90 percent of the time, I embody the disposition of a warrior: positive, poised and determined. For the remaining 10 percent, I let my guard down.

I’ve kept these secrets because I don’t spend much time talking about the negative effects of my condition. Honestly, I find that when I do, it’s hard to stop. But, with the intent that our chronic pain community is better understood every day, I’m hanging up my armor and letting down my guard. Below are the secrets I’ve kept while living with fibromyalgia, chronic pain, chronic fatigue syndrome and Sjogren’s syndrome for the past nine years.

1. There are 48 hours in a weekend. I spend 18 to 20 of them in bed, trying to heal my body.

2. Would I like to come to your party? Yes! But the hard truth is that getting dolled up on my day off is not worth it.

3. Nine years ago, summer made me think of an endless outdoor festival. Now, I think of when I was a little girl in trouble, grounded to my room while all my friends played outside.

4. “Club My Crib” is my favorite weekend hangout.

5. Every morning I fight a war with my body. My energy is sapped before I even step foot into the office.

6. For the past nine years, I have had morning sickness. Every. Single. Morning.

7. Sometimes during a flare, I think it could last forever and I feel like I can’t go on.

8. Some days the pain gets so overwhelming that all I can do is cry.

'some days the pain gets so overwhelming that all I can do is cry'

9. A flare can come like a hurricane without warning and knock me off my feet. Flares don’t care that you have to present in front of a room full of people in just a few minutes.

10. Every time I picked up my meds and vitamin prescriptions, I used to feel judged by my pharmacist. Now, he and I are besties.

11. There are nights when my pain relieving gadgets and meds just don’t cut it. During a flare, I’m lucky to get more than three hours of sleep.

12. On bad days, I’m in survival mode. I eat what I have to to get through the day…sugary treats and all.

13. It’s been raining for five days. As terrible as it is for you, my fibro body has rusted up like the tin man’s and literally cannot function.

'my fibro body reacts to the rain by rusting up like the tinman... I literally can't function.'

14. Because of the ample downtime I need, my husband and I have watched every episode of every TV series and seen every movie known to man. Looking for something to watch? Our all time faves are Game of Thrones, House of Cards and The Usual Suspects.

15. The fastest way for me to lose my aforementioned poise and positivity is when I see fibromyalgia commercials on TV. They are the worst!

'fibromyalgia commercials on TV make me mad!'

16. I am a warrior: I fight for a normal life every second of every day.

I can only imagine the secret struggling happening throughout our chronic pain community. If you feel like this is a safe place to share, I encourage you to reach out in the comments. You will find that you’re not alone. You may have the right words of support for someone who’s shared a story just like yours. Now, I’m going to put my armor back on and hope there’s a new release on Netflix.

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