What it Feels Like

Some of you may not know what Fibromyalgia is, and others may have preconceived ideas about it.  So I’m here to tell you how Fibromyalgia feels for me.

Over the past several years, I’ve begun to feel progressively more and more tired. I don’t mean just “sleepy” tired, I mean completely exhausted. There are some mornings that I am so exhausted that I absolutely cannot get out of bed.  I gave birth to twins, and although that was 20 years ago, I still remember how exhausted I was when I was pregnant and after the babies were born.  But that was NOTHING compared to this kind of tired! 

The ironic thing about Fibromyalgia is that even though I’m exhausted, I can’t sleep at night. Some nights my brain is running on full speed, and I have so many thoughts that I just can’t sleep.  Other nights, I’m either too sore or uncomfortable to sleep.  Sometimes it’s too hot in the room, other times it’s too cold.  Sometimes I just feel too much pain and the pillows or mattress hurt my body. In general, I can only sleep for about 3-4 hour at a time right now, so I take naps during the day to make up for the sleep I miss at night. 

Pain is an always present thing for me. I don’t think I realized how much I was living with pain until I really thought about it.  Pain has become the new normal for me. I’m constantly aware of it, but I try not to dwell on it.(Can I tell you how much I HATE those “rate your pain on a scale of 1-10” questions that I get at the doctors’ offices?! )  I’m learning ways to relieve my pain through medication, meditation and gentle exercise. I have also learned that I need to get up and stretch occasionally and that remaining in one position for too long is not comfortable.

Perhaps the most frightening aspect of Fibromyalgia, for me, is the “brain fog”. That’s the term used for the forgetfulness that people sometimes get when they have Fibromyalgia.  I’ve noticed this forgetfulness happening for some time, but I attributed it to getting older or just having too many things to think about. Now I understand that this is another symptom of Fibromyalgia. I often forget things like names or dates. I can’t remember details, unless they are written down for me. I have a million brightly colored post-it notes on my desk to remind me of things that I have to do because I would forget otherwise. Fortunately, Fibromyalgia isn’t going to cause me to lose my memories forever.  I can almost always access what I’ve forgotten once I get a reminder, but it's still scary to not be able to remember things.  

Not all Fibro patients have the same symptoms.  Some people have irritable bowel syndrome or other digestive issues, and others suffer from severe anxiety or depression.  Many people also have increased sensitivity to sounds, smells or tastes.  (I have started to learn that I can't have the television on when my husband is talking to me because it's too much sound at once.)  

I'm not claiming to be an expert on Fibromyalgia.  I'm just trying to figure it out as I go along.