I also have fibromyalgia which is often an invisible disease. I look okay on the outside, and there are a lot of times where I am not in pain. So why all the sudden do I turn up with a cane or a limp? Why do I run with my daughters some days, and other times I am the mom on the bench at the park that doesn’t get up, even when my sweet darling asks me to push her in the swing? It is a chronic pain disorder that affects muscles often causing widespread pain. The running thought is that it is a neurological disorder and pain signals go haywire or are misinterpreted.
Why do I act like a hermit at times? Have I cancelled on you last minute? Have I missed your phone call, or not keep in touch as much?
I have been living with neck pain for at least years, I remember the headaches and the muscle tension being really bad right after I had my second daughter. The time where it hit me that it wasn’t normal and I had to find some relief– it hit me on a level nine pain scale. I had taken them to a bounce house, and I remember sitting there with my head pounding, my shoulders and neck muscles hurting and feeling like they couldn’t hold my head up. I remember the nausea, the pain, the feeling like I needed to sleep, but couldn’t. I had dealt with migraines and such in high school but it had lessened for a while, then my earlier headaches could be blamed on pregnancy and postpartum.
I did have a car accident in high school, and the muscles in my back have been pretty unhappy since then. They will swell and one side will put pressure on my spine. This may have been the starting point for the fibro. I now also have arthritis at the base of my spine, and the pain from the fibro is on the bottom left and right of my back. Sometimes it hurts to put the full weight on my legs and it is often a problem turning over in bed as well as getting up from bed.
Things haven’t changed a lot. I now go to physical therapy, the chiropractor, my general practicioner, a neurologist, a counselor and a psychiatrist.
Things I struggle with. Often fibromyalgia is an invisible disease, so I wanted to share some of the things that give me trouble on my bad days: fixing my hair-it hurts my neck and shoulders to hold my arms that way. Putting on a bra
giving my kids a bath-hurts my knees, lower back and neck. my husband and mom handles that
housework-it hurts to unload the dishwasher, anything that I have to bend for, getting dishes, picking up food off the floor or a dropped towel. It hurts to get laundry out of washer and transfer. Pushing the vaccuum not only hurts my back but along with dusting messes with my asthma and allergies.
parenting- lifting my daughter-bend to give her a kiss when I put her to bed, put her in the carseat, struggle her shoes on. walking to get my lil girl to and from the bus (hurts my back when I step and keeping the younger out of street, pushing the stroller hurts my neck and wrist, carrying her is back and neck, if she doesn’t want to come, her pulling on my arm is killer on back and neck. my knees often hurt when walking as well.
memory/concentration- I have long term memory gaps, can’t remember much of childhood or friends or extended family. when reading have to take notes for my review or I can’t remember characters and what I wanted to say about the book
short term- leave car on in garage because I have a certain order for getting out of the car and I had extra step of getting a bag (not only once), having to park in same row or can’t find car, shopping sometimes even when I do have a list
headaches- start in my neck then get sensitive to light and sound,
sleep-deal with insomnia at times, and always wake up refreshed, like I haven’t slept at all. Deal with fatigue all day long and always want to sleep but naps don’t make me feel any more rested.
I have social anxiety– I feel like people talk about me negatively, worry about what they think of me, if they like me. Forget what I am going to say, and details of other’s lives. Not great with names.