Fibromyalgia can produce a wide range of physical symptoms – such as chronic pain, fatigue and brain fog – that can be difficult to manage and cope with. And while these symptoms can certainly be serious and debilitating, fibro can affect so much more than “just” your body. It can have an impact on just about all aspects of your life, including your mental health, lifestyle, relationships and sense of identity, and these effects can be just as challenging to deal with as the physical symptoms.
We asked our Mighty community which side effects they consider the worst and how they cope with them. If you struggle with the following as well, check out the strategies and reminders that help our community on difficult days, and remember that you’re not alone in dealing with the hardships of fibro.
Here’s what our community shared with us:
“The overwhelming guilt. Guilt for not being able to help much around the house. Guilt for not having the energy to make a dinner that isn’t frozen or from a box. Guilt for enjoying a night out once in a while, when I feel like I should’ve spent the energy on doing something around the house.” – Stacie B.
“The constant guilt that you are letting everyone around you down. The dinners you don’t cook, date nights with hubby you just can’t manage, the girls’ nights out you miss, play dates your kids don’t make because you are too tired. Guilt!” – Heather S.
“How do I cope? I try to remind myself that I didn’t choose this illness. That I deserve to still enjoy some things in life, despite the things that I can’t accomplish. It’s hard, and I don’t always do a great job at coping, but I try.” – Stacie B.
“It’s not my fault. It’s not your fault. Our bodies aren’t ‘normal.’ They won’t react to life normally, and that is OK. We will struggle. It will be harder for us than other people, but that doesn’t mean we failed. It just means we are different. It means we can understand when others are frustrated when life doesn’t make sense because this is our normal. It is OK that we don’t understand completely and that our bodies just don’t make sense sometimes. That is no reason for us to hate ourselves, even torture ourselves to try to find out how to fix it. Fibromyalgia is what it is, and the only thing we can really change about it is our attitude toward it.” – Elizabeth Auwarter
2. Irregular Sleep Patterns
“The messed up sleep patterns that come with fibro, including the fatigue and insomnia. We can be sooo tired (fatigued, really) all day long. Then, bedtime comes and we are wide awake for no apparent reason. And, naps? They don’t help much because no amount of sleep takes the fatigue away.” – Rachel P.
“How do I manage? Keep seeking help through doctors and asking if there is anything to help, working on better sleep habits, using sleep aides, etc. It’s so exhausting and I really don’t know how we function like we do with so little sleep.” – Rachel P.
“How do you cope with disturbed sleep? Obviously, going back to my GP is the first step. But until my appointment rolls around, I have to do something… I started meditating a few months ago, and decided to use it to help me sleep. On the Headspace app, there is actually a sleep pack, but I’ve used various sessions – stress, restlessness, anxiety – to help me relax and fall asleep more naturally. While it doesn’t always stop me from waking up during the night, it does help me actually get to sleep, which is half the battle these days. I’m also laying off caffeine after 8 p.m., opting for decaf teabags in the evenings.” – Vikki Patis
3. Anxiety and Depression
“Just when I’m feeling better physically, my anxiety will kick in because I don’t want to feel bad again. And when the pain is back, my depression comes along with it. It can be a never-ending cycle. Mental and physical health always go together. I will say I have learned to cope over the years and when I’m anxious and know that worry of pain coming back is a trigger, I remind myself it’s one day at a time. Same with my depressive episodes.” – Alexis M.G.
“If you’re physically sick, it’s exceedingly normal to develop mental illness symptoms as well. You are not alone, and you are not to blame. But just because it’s normal doesn’t mean you can’t treat it and try to create a life with more peaks and fewer valleys. Like any other symptoms of chronic illness, there are steps you can take. There are medications. There are therapists who specialize in talking about illness. There are support groups and friends to talk to and books to read and meditations to do. It all might sound a little hokey, but it really helps.” – Samantha Reid
“I wanted to tell those who have experienced [panic attacks] that it can get better. That therapy can help both physically and mentally. That it’s always important to get the help you need. To please reach out. There are people that can help. All you have to do is advocate for yourself and get that help you need. It’s a slow process and not easy, but it can help in the long run. Once you can figure out how your brain ticks it can help you avoid this kind of thing. And even if you can’t avoid it, breathe through it and the next day will come. Even in the next few hours you will not be trapped. That trapped feeling will only last a short period of time and then you are free.” – Paige Whitney
“Don’t ever be anxious or uneasy to reach out to qualified mental health professionals for help. You are valued and appreciated by those who love you, and you deserve to live the best life possible. That means acknowledging the dark and scary reaches of your mind and managing what you find there. And if you find depression there, you deserve to receive the necessary treatment to improve condition both physically, and emotionally.” – Amy Rheaume
“Not being able to live the life I used to live anymore and having friends tell you that you seem to be giving up and not fighting it anymore. Nobody grieves the old me more than me. I’m not giving up, I just know my limitations and the reality of my illness.” – Sarah E.
“A person doesn’t realize until it happens to them but you go through the stages of grief! All of them… denial, anger, bargaining, depression, acceptance! I’ve never made it to acceptance and stayed there very long. It’s a terrible cycle that never stops.” – Bonnie S.W.
“Grief. Realizing you can’t do something that you used to do. It might be years after you thought you’d got over it and something comes up and it hits you again, a smack in the face. That’s the worst I’d say, although there are so many.” – Michelle U.
“I actually didn’t realize I was grieving my former life until recently. I’ve been doing it since before I was actually diagnosed but had not realized it at all. I think just realizing that the feeling is grief is a good starting point. Instead of feeling sad and defeated about all the things I used to be able to do, I can now think, ‘Thanks brain for reminding me of how important my independence is. However, ____, ____ and ____ are how I am still independent. I have not stopped!’ And it helps.” – Paige W.
“I grieve ‘the old me’ as it often sneaks up on me daily. My chronic illness has impacted my career and I am currently unable to work. When I catch myself entering a moment of grief, I acknowledge the feeling and then seek out the positive things happening in my life at that particular moment. Finding gratitude even in the small things helps me to work through the difficult feelings associated with chronic illness.” – Angela M.
“It’s OK to feel sorry for yourself and grieve for the life you once had. It will also be OK when you are able to find acceptance and move on to a place where you can look back at your former self without feeling pain, and can feel happiness because of who you were and realize you are still that person. You are still the same person you were before your diagnosis. You may even be better because of it.” – Jennifer Yant
5. Not Being Able to Play With Your Kids
“A mother will do anything to protect her children from pain, emotional and physical, and it feels like I am hurting them when I have to opt out of activities or when I have to ask them to stop touching me because it’s too painful. What kind of a mother does that? But then I remember I have raised intelligent, compassionate, loving and resilient little humans who get everything from me that I can give. Between their father and me, they get all the love they need. When they’re adults, they’re not going to remember mom missing out on nature walks, but they will remember how loved they were and are. I am not damaging them, but my guilt is damaging me, and I have to learn to let go of it.” – Joanna Dwyer
“Invent activities that allow you sit or lie down. My kids became experts at card and board games because I could play lying down. And don’t count out the movie marathon. Your kids won’t be ruined by a day of snacks and movies under the blankets, cuddling with you because you’re just that sore or tired. Your kids want your time, not your physical prowess.” – Sharilynn Battaglia
“There are lots of us who are taking it one day at a time with fibromyalgia pain and we do, if I may say so myself, do a good job of taking care of our children and making sure they have a semblance of a normal life. But when we get hit by a long and painful flare-up, we have no choice but to put ourselves before them. And it is during those trying times one has the opportunity to see the resilient, responsible, resourceful and the empathetic nature of their children. Granted, there are times when I feel so overwhelmed that I feel like I messed it all up, but I guess all of us, whether we are ill or not, feel that way. And I just have to let that feeling pass, like how I always wait for a flare-up to end. All I know is I will love my boys even when they mutter ‘Mom…’ (while rolling their eyes at the same time), try as much as I possibly can to do everything I can as their parent, be open with them about my health and answer their questions in the best possible way and just be there for them always (even if they don’t want me to), just in case they need me for something, as I have learned that: ‘There is no such thing as a perfect parent. So just be a real one.’ (Sue Atkins)” – Lakshmi Rajagopalan
6. Loneliness and Isolation
“Loneliness. I can’t work a regular job, and my friends have all drifted away. Canceled visits, dinners and last-minute plan changes aren’t something I want to do, but since when is fibromyalgia courteous?” – Ashley A.
“Feeling isolated and left out as your friends move forward without you. My circle of friends is smaller now and my husband has become my best friend and rock.” – Lori A.
“Like with my chronic illness diagnosis, acceptance is key. While the emotions of loneliness creep into my life, both expected and unexpected, I have to remind myself this is part of life and part of what happens with chronic illness for many. I am not as alone as I feel. I must recognize that my illness will make me feel even more alone than I am in reality. I can also control some of my loneliness by knowing some of the best friends to make are others who are chronically ill. There are always new chapters in life.” – Eileen Davidson
“Even though loneliness is, by definition, exclusive, we can find unity in knowing we’ve all felt excluded because of being chronically ill. We may not understand each other’s pain exactly, because every case, every person, is unique. But I’m still here because I know there are people out there who really do understand the anguish – maybe not the actual physical experience – but the loneliness, the isolation, the fear, the mourning, all the consequences of what stems from the physical deterioration… I hope you know you’re never truly alone in your battle.” – Megan Klenke
7. Feeling Like a “Burden”
“I feel like a burden… After my ex-husband checked out of our marriage because I was too much to care for (even though he was a nurse – I thought he would understand the most), I have this fear that I’m just a burden and that I don’t really offer much of value because I don’t know what good days I’ll have or how much I really can do. It’s depressing at times to feel like you really don’t do much but exist.” – Didi M.
“You, my dear friend, are not a ‘burden.’ Your illness is a heavy weight, and it is your weight. But even being solely yours, it cannot be carried by you and you alone. Because you are a friend, family member, gift, warrior and fighter, chances are you have a support system to help you carry it. Do not be afraid to ask for help. The ones who are meant to stick around will ask how they can help share that weight whenever they can. You were not made to carry this alone.” – Mary Puglisi
“On days where I feel like a burden, when I feel useless and helpless, I tell myself that maybe the good I offer to the world offsets the baggage that comes with me as part of my health conditions.” – Rachel Hill
“I struggle with this feeling every day. I make sure to keep in touch with my loved ones who truly care and support me, even though there are very few. I also have an online support system full of amazing fibro friends who are always there to listen and share experiences.” – Kristin S.
8. Receiving Judgment and a Lack of Understanding From Loved Ones
“When loved ones don’t understand or try to understand the lifestyle changes one must go through in order to maintain a life with fibro. I ask for help when I desperately need it and it’s devastating when some just don’t understand I’m asking not out of laziness but need. In turn, if I’m left to do these things on my own it takes my free time away from them as I need to spend it recuperating. I’m still me – only thing that’s changed is my physical abilities.” – Julee A.
“Judgments from some when you are simply trying to take care of yourself – such as judging you a ‘drug addict’ just because you have a prescription for pain meds.” – Sarah N.
“People not understanding exhaustion when it occurs.” – Janet B.
“We can’t be burdened by the need to explain ourselves to everyone who doesn’t already understand, but we can keep moving forward… For me, this means holding my head up, and walking past someone who seems to be looking at me askance as I get out of my car in a disabled parking spot, or who wonders why I’ve brought my dog into the grocery store – even though he is clearly marked as a service dog, and bravely canceling appointments and activities I simply don’t feel I can do on any given day. The people who know us understand – at least to some extent – and the other people’s opinions simply don’t matter.” – Cyd O.
“To people that are living with a chronic illness: It’s OK. You don’t have to meet everyone’s expectations. You should set your own expectations for yourself, because only you know your limits and what you are capable of. There are people who will always judge you, and that is a reflection of who they are as a person, not you. I believe that since we have become ill, we may struggle to get back to the person we once were and that includes our relationships. We have to face the fact that we are no longer the same person. We have grown into someone much stronger. If we have changed, how could we expect the relationships to stay the same? It’s OK — I believe every person has been put into your life for a reason. Some people don’t always stay, and that’s part of life.” – Jennifer Kuettner
9. Frustration and Anger
“The random rage from the build up of pain and overwhelming amount of emotions.” – Brooke H.
“One day, I realized that getting angry at myself is not going to help me in any way. I recognized that I was fighting my own body and ignoring its pleas to stop or slow down. If a friend felt the way I did, I would never treat her the way I treated myself. I began to pay closer attention to my body’s pain and symptoms and respond positively… Eventually I moved away from feeling like an angry victim to feeling like an advocate for my own health and well-being. Life is much easier when I think of my body as my friend.” – Kalyn Gabriel
“Anyone who is having issues controlling their anger due to the constant trials of chronic illness and pain would benefit from finding new, healthier ways of coping. Whether that’s through therapy or other means, I believe it’s something that should be worked on, and addressing this in a proactive way will make everyone happier. Including the person who is ill and in pain… It’s worth it to find some new coping techniques that don’t involve hurting those we love.” – Lisa Prins