Ten Things I Learned After My Fibromyalgia Diagnosis
In this blog I will focus on ten things I have learned about myself in the past year and what I’m doing to manage those things in relation to my fibromyalgia.
My Fibromyalgia symptoms have been ongoing since April or 2019. If you could read my “poem” on keep on keeping on, you’ll know I went through a few scares and a sh*t ton of testing. In this blog I will focus on ten things I have learned about myself in the past year and what I’m doing to manage those things in relation to my fibromyalgia.
What is Fibromyalgia?
For the newbie spoonies, according to the National Fibromyalgia & Chronic Pain Association, Fibromyalgia “is a common and complex chronic pain disorder that causes widespread pain and tenderness to touch that may occur body wide or migrate over the body. Along with other symptoms, pain and tenderness wax and wane. Fibromyalgia (FM) affects people physically, mentally and socially.”
Approximately 10 million Americans (2-4%) have FM with a ratio of about 8 to 2, women over men. It occurs in people of all ages, including children. The literal translation of the word fibromyalgia is pain in the muscles, ligaments and tendons.
But FM is much more than pain and presents with many other symptoms that vary from person to person.
So let’s talk about my fibromyalgia.
My first trip to the hospital whereupon we thought I was having a heart attack.
My body’s size fluctuates from an 8 to a 12…sometimes daily.
This isn’t just a fibromyalgia thing. On top of fibro I have severe gastritis, IBS, and other issues that stem from the fibro. Depending on what I drink, eat, whether I walk or bike ride that day, and even depending on the temperature outside, my midsection is more inflamed than normal. This puts me in an uncomfortable position each day where I might change my clothes two to three times depending on my level of inflammation and pain.
I’ve focused on wearing and incorporating more casual wear into my daily wardrobe and have been loving on Sozy, a brand focused on soft flowy fabrics that make me feel good and look cute. Many people don’t have any issues wearing yoga pants or leggings day in and day out but for me I like the ability to change it up and vary my looks (even during the pandemic).
Planning is more important than ever
I’m the person who loves to be spontaneous and last-minute things. With Fibromyalgia, though? I could wake up one day and am incredibly exhausted – incapable of doing anything. I don’t plan on being sick, but if I end up having one or more days laying in bed or on the couch, I have to reroute the coming days’ plans/work and take a step back from anything that may have been a pre-planned event.
Being spontaneous is still possible with Fibro, but how I go about being spontaneous now is much more different from in the past. For example, if I wanted to get up early and go hiking before I start my day with work and my kids, I could totally do it and come back home to work with no big deal. Nowadays, if I want to hike in the morning, I have to ensure I have nothing else pressing or going on that day so I can take the day to rest. At first, this felt like a little of my joy was being sucked out of my life but after a few months of getting to know my new normal, it allows me to live more intentionally.
First bout of hardcore testing with a heart doctor. So many cords monitoring my heart to see if that was the issue…obvisouly it wasn’t.
I can’t be a social media manager anymore.
Social media management has been my main game for over 10 years now and everything was manageable until December 2018 – that’s when I remember first noticing some symptoms I now have. In the first eight years of my business I worked between 60-80 hours each week (while being a single mom and getting a master’s degree). I was killing myself slowly and bringing Fibromyalgia to the surface even faster than I would have if I’d been working a regular job. Working for yourself is fantastic, so long as you are willing and able to work your ass off for years until you make a true killing.
A myth people will tell you about their roles in the entrepreneurial world is that it’s so much better and easier compared to their old corporate jobs. And that’s true to some respect, but ultimately working for yourself from home is isolating and draining. This is especially true for social media managers. Social media never sleeps, and if you think “well that’s a cliche!” Then you’re right! It is, but it’s also true AF. I would get up by 8 am EST each day and stay until 12 am PST most nights of the week working on engaging customers and followers for clients (never myself). In the world of social media management you’re up early and stay awake late. There’s always someone to respond to and something I didn’t take the time to learn to do was saying “no.”
When I first became sick in April 2019, I kept saying yes, I tried to keep taking on more and more work without ever feeling like I could get anywhere. Then lost a lot of my work because I could no longer keep up with it. I felt like I was failing my clients, but in reality, I was failing myself. When you have a chronic illness, stick up for yourself and keep your boundaries. Hardlining my boundaries over the past few months has allowed me to truly pivot away from active social media management and into consulting and strategy construction.
Exercise is important – but nothing super intense.
Everyone will tell you how important exercise is and if you’re like me and haven’t ever been someone who has been all about that runner life, you’ll roll your eyes…HARD. But I’m here to tell you that first, no one may tell you how you need to work out or how often. You hold all the cards! Getting diagnosed with fibromyalgia has allowed me to take back the deck and play the cards I’m interested in playing, taking no shit from outside parties. I will say, my husband is very keen on my working out each day but he never forces it, just encourages it. I’m terrible at holding myself accountable and do a piss-poor job of following through with working out. So helping with this, I asked him to help me be accountable and encourage me to set the intention to work out lightly each day. Here are a few workouts I do throughout the week that help keep my symptoms at bay and make me feel better:
Bike ride around the neighborhood
Evening walk with the family
Long walks with my husband on no-kid weekends
I won’t be doing a triathlon soon. I will keep my physical wellness on top of mind though. A point of truth here – even after walks with my husband and kids, my hips, knees, and muscles are ten times more sore than they normally would be because I have fibromyalgia. It sucks, but again, knowing and setting an expectation with myself is important to keeping my morale high. I also take it slow and don’t push myself too much.
There were many days where my spirits weren’t this high but in this instance I was putting on a brave face for the kiddos.
I will probably have a hard time visiting Disneyland.
This relates back to exercise. Going on lengthy walks with the family is often difficult and requires breaks throughout so I can rest my legs. Disneyland is all walking and I’m not too keen on being one of those wheelchairs in the crowd’s way and slowing everyone down – however, if that’s what I have to do a little I’m willing to do it because I love Disney. An issue I have with many people who talk about the “cans” and “cannots” of chronic illness is the limitations set on us.
Just because we’re chronically ill does not mean we’re incapable. Life is just different for us, we’re coping with that and finding alternative ways to overcome obstacles. It’s forced me to get more creative about the way I go about my day.
Planning for a baby takes a lot more effort.
My husband and I want to have at least one more child. We both have a child from a previous relationship and have always wanted more. So, we’ve been working toward that goal by seeing the doctor more frequently, getting a better understanding of the disease I have, and noting everything we can do to ensure my quality of life is intact during pregnancy. There isn’t a lot of information about how women with Fibromyalgia do with pregnancy so I plan to document my experience during this time to inform the other women out there with fibromyalgia and spread some hope.
As with every pregnancy you can’t really take a lot of medications so I have been working on weaning off Gabapentin and focusing on natural solutions for pain management and symptom treatment so when I become pregnant we’re able to keep my symptoms at bay as much as possible. There’s also the important note to consider of being a high-risk pregnancy; We unfortunately won’t know how much body will react to pregnancy until after I’m pregnant. We can make predictions based on the pregnancy I had in 2019 where I had zero symptoms, but we then experienced a miscarriage without fully understanding how my body would react throughout.
Epsom salt baths have helped alot with inflammation and taking a long, candle lit bath a few times a week has become part of my self-care routine.
I am tired all day long.
I’m an ambitious woman, I try hard not to let my exhaustion keep me away from working. To manage my energy levels, I do some light workouts, eat vegetarian, cut out sugar, take my vitamins each day, and take a small nap when I know I really need it.
It’s okay to get tired and take naps as needed, shoot, if you’re having a hard day, it’s okay to take a step back and sleep or rest for the entire day. If one day of resting and doing nothing during the work week will give me four super productive days, I’ll do it–and you should too.
Choosing foods that give me sustainable energy is important.
Above, I mentioned I’m a vegetarian. This isn’t because I’m trying to be some hipster or follow the “don’t eat animals” trend, I’m eating vegetarian because of my gastritis. I’ve tried so many diets and the last one that helped me get to my current meal plan is the elimination diet. Upon eliminating all meat and meat based products from my diet, my stomach pain and IBS became more manageable. My energy levels were also more self-sustaining and allowed me to refrain from the mid-afternoon slump.
If you’ve been diagnosed with other digestive issues alongside your fibromyalgia, I highly recommend working on eliminating foods from your diet that cause inflammation. Another food type I eliminated besides meat are nightshade vegetables. According to Medical News Today, there’s no scientific evidence that supports nightshade vegetables causing inflammation. MNT says, “Nightshade foods contain solanine, a chemical which some people believe may aggravate arthritis pain or inflammation. The Arthritis Foundation says that this is not true. However, if a person feels that certain foods trigger their arthritis symptoms, including nightshades, they should avoid these foods.”
Sometimes you don’t need scientific evidence to back up your choices in food, you just have to trust your gut.
The first photo is a more recent trip to the doctor for a weekly IV treatment and I was having a very hard day. The second photo is me on a good day walking around the world with Fox.
I can work so long as it’s less than 30 hours a week.
For a while I was worried I wouldn’t be able to work anymore. I kept thinking, “Am I going to give this all up?” And that couldn’t have been farther from the truth! I did a lot of soul searching during the earlier days (because it’s still the prior days for me) of my diagnosis, trying to understand what my work week could look like and what I wanted it to look like. So, instead of being a social media manager and leaving that industry entirely, I pivoted and am completing the transition into consultancy and choosing projects and clients that work best for me. Being picky about who I work with and what I work on allows me the flexibility to take a day in the middle of the week to be sick and take care of my family.
I tried working a normal 40 hour work week, and it ran me into the ground, when I started working 30 hours or fewer, it really helped me stay motivated and focused on my work and keep my symptoms managed. Getting up early and staying up super late does nothing good for my body so keeping my working hours minimal and enforcing downtime on myself has made the work week easier to manage.
I need to get comfortable asking for help.
Most ambitious people are terrible at asking for help. We want to do it for ourselves and reign champion over working ourselves to death. And sometimes in my case I want to be seen as the woman who can do anything and everything. I built my brand off benign a one-woman show, benign a single mom, and an empowered female. Since being diagnosed with fibromyalgia though, I’ve noticed that I have been more empowered than I was before. Saying “no” is just one simple part of feeling more in control of my destiny, but saying no to myself and knowing when I need someone to step in and help me has been a freeing experience.
That’s not to say I don’t have a hard time asking for help, because I still do, asking for help is something I’m working on getting better at doing. It helps me manage my symptoms and makes my husband feel more comfortable knowing I won’t push myself over the edge of pain.
Fibromyalgia is a lifelong incurable chronic illness, but that’s nothing compared to the awakening you experience when you realize how much control you have over the illness and not the other way around. A fibro diagnosis is not the end of your life, it’s just the beginning of your new normal.
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