Fibromyalgia manifests itself in different ways for different patients, but most can agree that all the symptoms are life-altering. It’s not always clear how (or if) they can be treated, and the physical challenges can all too easily turn into emotional challenges as the things you used to do become more and more difficult.
We asked our Mighty community with fibromyalgia which symptoms they consider the worst and how they cope with them. If you’re experiencing these difficult symptoms as well, check out the strategies they use, and don’t forget that you aren’t alone in dealing with the hardships of fibromyalgia.
Here’s what the community told us:
1. “Never-ending fatigue. I’m still trying to figure out what helps, but so far, certain homeopathic medicines are working. My online support group helps tremendously! And there’s always Netflix. Cuddles from my cats help, too!”
2. “When I feel like I’m walking through quicksand. The only thing that helps is to take a break for a day and rest.”
3. “To me, the worst part of fibro isn’t the pain/stiffness or the constant fatigue, it’s my non-existent social life and constantly feeling alone/misunderstood. Even on the awful days, I always find some way to cope or I just lay in bed and whine to my pets. But it’s hard to find a way to ‘cope’ with the loneliness and the depression that follows it.
4. “The worst is the joint stiffness and joint pain I get, the nausea, and being tired all day and then not being able to sleep at night. I’m a huge fan of the heating pad, and keeping hydrated, and taking my days one day at a time.”
5. “The whole body stiffness as if you’ve worked every bone in your body the day before. No way to deal with the pain, but working out does help…. lessens some of the stiffness. I really notice it more when I don’t do cardio. I tell my family I work out to lose weight, which is true, but it’s more so to help with the stiffness.”
6. “When something always hurts, it’s hard to focus. When you never get good sleep, getting through a work day without a nap is incredibly difficult. I use essential oils to help with both. I make sure I get the best sleep that I can and rest when I can.”
7. “Pain in every part of my body! Some days it even hurts to breath. I pamper myself on those days and do only what is necessary. I save a book I know I will get lost in reading, have a few naps, and try to relax my tight muscles to minimize the pain. I cuddle and pet my dogs a lot, too. I live by myself in the Minnesota up-north woods far away from the noise and stress of living in a city. The quiet and solitude help keep me relaxed.”
8. “For me it’s the cognitive issues. I can hide the pain, but when I can’t form words or get lost in familiar places and see the look of pity on faces of others, I want to cry. I used to be confident and outgoing. Now I just want to hide away.”
9. “Worst symptoms for me are the random hand twitches. I deal with them by making jokes.”
10. “Not having an internal thermostat. I’m rarely just a comfortable temp. Always hot or freezing! I try to dress with layers and know where fans and fresh air are when possible!”
11. “Waking up achy like I hiked 20 miles, feeling like I didn’t sleep at all, and feeling like my head is stuck in the fog. It feels like I’m jet-lagged all the time, walking through quicksand with the body aches of the flu… I try to have a positive attitude about the good parts of my life and manage the best I can.”
12. “The inconsistency. One day you may be feeling relatively good and the next day you are unable to get out of bed. Fibro doesn’t care if you have things to do that day; if it is a bad pain day, it is a bad pain day.”
13. “The worst symptom would have to be my loss of self. I worked hard for the life I had. I was happy. But now I feel like such a burden. No matter how positive I am or how much I smile, I struggle with the constant removal of independence. I’m not sure how to love or even like what I’ve become. I do have amazing support from my partner, and I appreciate it it more than he will ever know. Time together will make a difference. So will finding new happy moments and places.”
14. “The worst symptom is a specific kind of pain; it feels as though I’m being stabbed, in random order, with a red-hot electrified knife all over my body. There’s no relief. All I can do is rub my feet/hands/legs/arms, curl up in a ball and wait for it to pass.”
15. “I have good days and bad days, but on the bad days it feels like every joint in my body is screaming. On those days I take a nice long epson salt bath with bubbles and calm music; it always helps.”
16. “Fibromyalgia flare-ups are the worst. The pain is unbearable and it is felt in every joint, every muscle, every nerve. The fatigue is overwhelming, and sleep is often kept to a minimum since the pain is so severe. Flare-ups happen because of stress, weather, overexertion, and unfortunately, sometimes there’s no reason at all.”
17. “Feeling alone. I have found a great online community, and I cherish the couple understanding friends I have.”