As I was getting ready for work yesterday morning, I took a good look at myself in the mirror and realized that I actually do look sick. It is often said that ME/CFS patients look healthy but I usually don’t. When I am having a flare, my eyes will get very small. My husband describes the look of my eyes as “two pea holes in a snow bank”. My eyes will get really puffy, they will hurt, and it feels like they do not want to stay opened. The worse I feel, the worse my eyes look. My husband has commented that there is no way you can fake that look when I told him my ex-husband used to accuse me of faking my illness.
Another symptom I frequently experience that we don’t hear a lot about with ME/CFS is ringing in the ears. The ringing will get so bad sometimes my ears feel like they are going to pop. Everything will all of a sudden sound like it is muffled, voices and noises around me sound as though I have cotton shoved in my ears.
You would not believe how many nights I have laid awake because my entire body itches so bad. I will scratch so much I have my skin bleeding sometimes. Rashes are another problem I will have. I will get these little red patches on different areas of my body, particularly my chest and stomach, and my arms will have these tiny little bumps. They kind of resemble pimples but they’re probably only the size of a pin head. I have also recently developed some sort of rash on two different occasions that felt like burns but I didn’t burn myself. The first one was on the back of my left leg, the second rash was underneath my left arm. I noticed the rashes when I felt this incredible burning pain. They were red and were kind of scaly. The one on my arm started to spread but then it stopped. It has healed but I still have scars there. Still haven’t figured out what that’s all about.
Ask anyone who knows me well and they will tell you that I have difficulty getting words out and completing sentences. I lose my train of thought so easily and my concentration is continuing to get worse the longer I have ME/CFS. Sometimes I can’t get out the simplest word or phrase. It’s like my brain doesn’t catch up to my mouth or something. It can be embarrassing when I am talking to someone who doesn’t know my health problems and they just give me a blank stare and have to finish my sentences for me. I get that “Wow, what an airhead” look.
I have been experiencing the CFS hot flashes for years but as I get older, I also am starting to get the hot flashes associated with perimenopause. But this recent flare over the past couple of weeks brought back the markably different hot flashes, and more severe, that I haven’t experienced for quite a while. Every night I experience hot flashes, but these have been unbearable. I felt like my whole inside was on fire and my husband could feel the heat coming off of my body without even touching me. It doesn’t seem to matter how low I turn down the central air, nothing helps me cool down. What I have noticed that is really odd is that even though my body feels like it is on fire, and others can feel the heat coming off of me, my temperature when I take it is way below normal.
If I had a dollar for every morning I felt like I was going to puke my guts out since becoming ill with ME/CFS, I would be loaded. I have only been pregnant once, but I have had that morning sickness feeling enough for over a dozen kids! There have been times where I have thrown up when this nausea hits, then once I’ve done that I will feel better. Most of the time, however, the nausea remains for most of the morning.
I wear sunglasses every day, all year round, and I will wear them up until it’s almost dark (especially when driving). Even in my house I keep the rooms dark and I am always going behind my husband and son turning off the lights because of how much the light gives me a headache and makes my eyes hurt. On cloudy, rainy and snowy days the light is still too bright.
I didn’t start experiencing panic attacks until after my son was born and he will be 8 years old soon. I remember the first time I had one I was having a bad CFS flare and I was trying to get out of the house after being bedridden for so long. My husband took me to Walmart to buy a few things and when I saw all of the cars in the parking lot, I had a panic attack. I also will have panic attacks when I’m flaring when I am around a lot of noise or people, especially children. I have had a few of these in my own home when we have had family visit. I will feel my heart race, I start to sweat, and I feel like I am going to have a breakdown. It will get really bad sometimes. I have started to have panic attacks at family birthday parties also and I have to leave.
Shortness of breath:
The type of shortness of breath I experience with a CFS flare is nothing like the shortness of breath everyone experiences from normal exercise, climbing a flight of stairs, etc. I wish I could describe it but it feels like my lungs are fatigued like the rest of my body and they have to work twice as hard to perform their normal function. It’s like I have to take really deep breaths to feel like I am getting any air.
Please comment with any weird symptoms that you experience with ME/CFS. I’m sure that I have more but I’m too tired to think right now!