By: Paige Wyant
Via- The Mighty
Whether your symptoms began in early childhood or didn’t develop until you were well into adulthood, having fibromyalgia can completely overturn just about every aspect of your life. But when people talk about fibro, often the physical symptoms (pain, fatigue, sleep issues) tend to be the focus.
While the physical symptoms and side effects can certainly be serious and life-altering, what about the domino effect of other changes and challenges fibro can result in?
For many, being diagnosed with fibromyalgia means making changes to your lifestyle. Perhaps these changes are (somewhat) voluntary – things you’ve started doing to try to better manage the symptoms of your condition. But perhaps these changes are simply things you had to do, because your health gave you no other choice. Either way, it can be incredibly difficult to make huge shifts in your lifestyle in an attempt to accommodate an illness that wasn’t exactly welcome in the first place.
To remind you that you’re not alone if you’re struggling with change, or grieving your “old life,” we asked our Mighty community to share some of the lifestyle changes they’ve had to make because of fibromyalgia. Perhaps some of the following will ring true for you, too.
Here’s what our community shared with us:
- “For the time being, I have to come to terms with not working. Hopefully I’ll be able to go back to my dream job eventually but my path towards it will be different than my original plans.” – Kail J.
- “I have had to become very selective about which late night events I will attend because they take so much out of me and leave me without a proper night’s sleep. I feel like it makes me seen antisocial, and I do feel a bit lonely sometimes because I’m always staying in.” – Terri D.
- “Separate bedrooms. Sleeping is difficult. Any noise or movement causes me to wake up in a panic. Sleep is my number one priority with self-care. Having my own bed in my own space has helped me immensely.” – Heather C.
- “I had to quit smoking. It was making my pain unbearable. It’s been seven years since I quit and that might be the one silver lining in all this pain, that it pushed me to quit.” – Jess V.
- “I cannot have back-to-back events to attend. I need a day between to recover from the energy spent.” – Carolyn M.
- “I was halfway through my masters in counseling. The fibro fog was so bad I dropped out. I hope to be able to return some time and finish but it will not be a full load. My body will not cooperate. But I will finish, one class at a time.” – Rebekah B.R.
- “I have to make more effort with my sleep schedule. I also have to use a wheelchair more.” – Gemma C.
- “Working part-time. I’ve set aside my career goals in favor of moderation. I have a strict schedule of self-management to help avoid flares. Fibromyalgia has taken away so much of my independence, strength and fun.” – Shonna K.
- “Not inviting myself to social events. Never knowing what my week could be like before the actual date.” – Miriam J.
- “I can’t go shopping alone anymore, not even to the supermarket. I need someone with me in case my body seizes up on me. Wait, did I say ‘in case?’ Sorry, I meant ‘when.’” – Bernie L.
- “I had to stop working and become the home parent… which I can’t even do 100 percent, maybe 50 percent at the most.” – Juggy
- “I’ve had to learn how to say no. I am the type of person who wants to help everyone. Sometimes I have to say no because I am in pain and I need to rest.” – Hilary B.D.
- “People with fibromyalgia don’t have ‘lifeystyle changes,’ they have life changes. I gave up ambitions for grad school. It set limits on what I can do as a career. It limits my socializing, and everyday life, what I can and cannot do. It impacts everything.” – Lea J.
- “I have a very rigid schedule. I eat, sleep, work, even bathe on a schedule to allow for recovery time. To keep this schedule I use lots and lots of sticky notes combined with alarms on my phone. What people don’t understand is when I deviate from this schedule it is a big sacrifice for them.” – Bay H.
- “I am very ‘type A’ in terms of how I handle my schedule and planning. I have had to make peace with the reality that I can’t really make plans – all my organization and thinking ahead balances precariously on how I feel when I wake up in the morning. Sometimes it’s not so bad and I can proceed as planned, other times I feel like I’ve literally been hit by a bus. On those days, I have to take it moment by moment and just do what I’m able. Extremely frustrating that fibro steals my ability to be consistent and makes me unreliable – even to myself!” – Mikhaile S.
- “Taking baths. I was a shower-only person but it is exhausting and it hurts to stand for a shower. Baths do help my muscles but it was a harder transition than I expected.” – Eloise T.
- “I have had to come to terms with my house not always being clean, and not always being able to take my son on fun adventures. When I am having a flare I can’t do anything, and when I am feeling good I have to be careful not to overdo it.” – JoAnna T.
- “Part of my fibro has been IBS so my changes have been in diet. After an elimination diet and then gradually reintroducing foods, I found that the IBS symptoms were triggered by gluten and caffeine. The changes haven’t been a problem for me but it is restrictive when eating out. It also causes difficulties with some friends and relatives who assume a diet change is for fun, or ‘to be noticed’ rather than for necessity.” – Jill C.
- “My independence. I was extremely independent before I got sick. I’d just got a promotion and within two months I was too sick to work. My amazing husband is now my carer. Now every day is a schedule devoted to pacing myself to avoid flares, it doesn’t always work.” – Rebecca M.
- “Having to stop working, studying, exercising… everything really at only 28 years old! Fibromyalgia takes over your life entirely and you have to learn to mourn your old life and recreate a new one, which of course isn’t easy!” – Katie T.
- “I had to wake up at least two hours early to deal with morning stiffness or to just go with it… people with FM don’t have a consistent lifestyle… it changes like different life cycles… every couple of months it changes.” – Breksam K.