Fibromyalgia is a chronic illness most frequently known for causing widespread pain, exhaustion and brain fog. Though, the disease is complicated it can cause a huge number of symptoms and is repeatedly accompanied by comorbid conditions, such as irritable bowel syndrome (IBS) or Chronic fatigue syndrome.
Doctors are might not be able to prepare fibro patients for all the different symptoms they may experience as they are still learning about this mysterious disease. So coming to the point, here is my list of the 10 things that surprised me because they either weren’t in the literature of the time, or they were considered to be uncommon symptoms of fibromyalgia. A couple of good things are mixed in as well nothing can be all bad.
I did not know it was possible to be so tired that even when you woke up in the morning you would be exhausted just going to the bathroom. Trying to do my housework or even getting dressed drain me out so badly that my legs literally give out. What it feels like you become so tired that even breathing feels like a task? Then when it’s time to sleep, you can’t. You might be able to for 45 minutes or so but then you have to get up and move around because the pain is so bad. Broken nights contribute heavily to the fatigue, but even on rare occasions when I do sleep through the night, I wake up exhausted.
Showering needs perfect timing
Sometimes I need to take a bath (when I’m able) at night, because it completely wipes me out. For most of the other healthy people, taking a shower wakes them up and makes them energetic. For me, it’s just the opposite. I become more exhausted. Read More on Showering Problems in fibromyalgia Here.
This one actually surprised me a lot. Who knew journaling every day would be able to give me a look back at how I have progressed over time? My advice to anyone who is fighting with chronic illness of any type is that they must keep a journal. It will give you the opportunity to remember the good days, the great days and the wonderful days. It will give you the chance to look back on those very black days when despair and anxiety had you so down you truly believed it would be better if you weren’t here. It will make you remember the reasons its better you are here.
It lies to me
Most of the time I’m very aware of how ill I am, but on those good days, I question it. Am I really sick? Do I really have what they say? Maybe I’m getting better! I’m reminded of the reality again when the weather changes and anxiety enters the picture. I truly am sick. But I’m SO thankful for those good days.
Getting advice that’s not helpful
I know most people come from a place of caring when they make suggestions or give advice. But it’s usually not helpful, and can make me feel worse. Such as: maybe if you change the way you eat, exercise more, get out of the house more, get a job, you’ll feel better. They also desire to know if you’re feeling improved yet, not understanding that “chronic” means lifetime. It’s better to seek to understand than to give unsolicited advice. I have been strengthened and challenged in ways I never could have anticipated. It has mellowed me and made me a more compassionate person.
Even though the things I read told me about fibro fog, it is not really comprehensible until you’re going through it. I didn’t know I would forget what I was speaking about in the middle of a sentence, that I would forget the name of my husband or child, that words which should come easily to me don’t and that stuttering would become a way of life as I struggle to find the words. This is the one I find hardest to deal with among all the things connected with fibromyalgia. How embarrassing to forget your best friend’s name or where she lives or her phone number.
Shopping has become an endurance sport
I always loved shopping, especially grocery shopping. Now on the days when I feel good enough to accompany my husband, I usually have to go sit in the car while he pays. My energy has once again been depleted. It can take hours and sometimes days to recuperate from a 30-minute shopping trip. I’m so thankful that my husband lovingly steps in and does what I can no longer do.
This one I guess I should have expected – that one by one the friends would all drop away, that I would have to cancel on them at the last-minute or just flat-out say no. It seems so funny to me I have friends all over the world online that I speak to at least a couple of times a week but those who were closest to me are no longer there. I have made some very strong friendships online but all of my friends who live close by I never see any more.
An unmet need for community
I’m so thankful for the gift of social media. It has connected me to a community of amazing women, who are also chronically ill. It’s a community of common suffering, perceptive, and empathy. Belonging to and facilitating groups on Facebook has given me an important lifeline of connection. You can also join our support community of more than 47,000 Members “Living With Fibromyalgia and Chronic Illness” To Join click Here
Nobody understands just how guilty you feel not being able to do the things you used to. For instance, it has become normal for my house to be a mess, as my bad days far outweigh my good days. I know my floor needs to be washed but if I do that then I am literally going to be laid up for two or three days to recover from it.