The symptoms of CFS are as varied as the people who have the illness. The Center for Disease Control in Atlanta estimates there are 4 million Americans with CFS. That's higher than lung cancer, breast cancer, rheumatoid arthritis and even HIV. The economic impact is staggering.
So, what are the symptoms? First and foremost is fatigue. Not just your basic tired from staying up late or not getting a good night's sleep. This is profound exhaustion and extremely low stamina. There are also problems with short-term memory and concentration. This is known as a "cognitive impairment." After many days of testing, I was told that I have a "severe cognitive impairment." To give you an idea of what this is like, it is exactly like the early stages of Alzheimer's according to the CDC.
Other symptoms are similar to having the flu. Things like aches all over, sore throat, swollen glands, headaches, and very little energy. But, this "flu" never goes away. Imagine having the flu for 12 years.
Other symptoms include; sensitivity to light, eye pain, depression, anxiety, chills, night sweats, shortness of breath, dizziness, balance issues, irregular heartbeat, low-grade fever or low body temperature, numbness and tingling, chest pains, rashes, ringing in the ears, sensitivities to noise/odors/chemicals, and fainting. There are many others and everyone has a different mix of symptoms.
Symptoms vary and fluctuate in severity complicating treatment and one's ability to cope with the illness. Let me share with you my experience as a person with CFS. Twelve years ago I thought I had the flu, but, it didn't go away. In fact it got worse and I quit working. I was having trouble staying awake and alert and I was having problems dealing with my co-workers that I had never had before.
I went to a doctor who put me through so many tests I felt like a guinea pig/pincushion. When everything came in negative, he said I had Chronic Fatigue Syndrome. He told me it wasn't life threatening just life changing. I went from an active energetic woman to a person I hardly recognized. I could no longer walk two miles each day. I could barley walk up the stairs. When I got to the top I was breathing hard and my heart was going faster than it should for just walking up a flight of stairs.
I hurt all over so much at times that I couldn't stand the bed covers touching me. I hurt everywhere my legs, my arms, my head, my back, my stomach, everywhere. I had no energy and wanted to sleep all day. My normal body temperature had become about 97.2 with dips as far as 94.2. When I have a temp of 98.6, I have a fever.
I used to love candles. I had them everywhere and I often lit them when I was watching TV. Gradually I realized that I had a bad taste in my mouth and my nose burned. I got rid of all the scented candles. Still had the bad taste and burning nose when they were lit. When we had a fire in the fireplace, I felt like I was smoking cigarettes. No more fires even if I wasn't here when there was a fire. My son had a fire a few times while I was away. As soon as I walked in, I could smell it and taste it, and my lungs burned.
The numbness and tingling symptom are the only ones that don't really bother me. I think it's because of what goes numb - my nose one side at a time. My ears do too but when half your nose is numb, it's weird. I get the numbness and tingling sensation all over. My arms and legs get it the most but my fingers tingle my head does too.
Dizziness and balance problems are scary. I never know how bad my balance problem is until I stagger and can't walk a straight line. I can't close my eyes and turn around in the shower or I will be overwhelmed by dizziness. I have a shower chair so I can sit if I have to. I use a cane to help me walk without staggering.
There is humor in CFS if you look really hard. I had fainted several times when no one was around except my dogs. My Golden always licks me to wake me up; it's much nicer than smelling salts or ammonia. One day my son and I took my granddaughter to the movies. After the movie we went to an ice cream store and got cones. Elly and I ate ours as we walked towards the car. Tim sat at a table outside the store. When I was done, I threw my napkin and cone wrapper in a nearby trashcan. Elly and I were standing at the corner waiting for Tim to catch up to us when I fainted. One minute I was standing talking to Elly and the next minute I was on the ground. I have no memory of what happened. I didn't feel dizzy. I was standing still. Tim said it was the weirdest thing he'd ever seen. He said I just collapsed. Finally, someone had witnessed one of my falls.
Then there was the time I was at the mall shopping for Christmas gifts. I was fine until I came out of one store and stopped for a moment to plan my next move. When I started to walk, I walked at an angle until I was up against a wall. I couldn't stop myself from walking this way and I couldn't get away from the wall. It was like a giant magnet and I was stuck to it. Hmmm, I thought, now what do I do. A kindly man came over and asked if I needed help. I said that I did and he pulled me gently away from the wall. He said he saw me walk over to the wall and couldn't understand why I was walking that way. He decided that I wasn't consciously walking toward the wall.
I explained that I had CFS and it affected my balance. He said he had heard about CFS but thought it wasn't really an illness. I gave him a couple of websites to check out. I guess some would find it embarrassing but I have always been able to find humor in strange places. That's what's helped me in my daily struggle with CFS.
I never know what kind of day I'm going to have. I can't join anything or volunteer because I'm unreliable. There are times when I am bedfast for weeks. Other times I feel almost normal. My dogs give me a reason to get up in the morning and they look to me to take care of them. In return they love me with all their hearts and would do anything for me. Emma my six year-old Golden retriever has not only licked me awake but she is also my assistance dog. She has pulled me up after I've fallen in the yard and can't get up on my own. And, Bugsy my 10 year-old Westie was prepared to die for me. I fell walking down the stairs. Bugsy came rushing up toward me. I thought if I land on him I'd squish him so I threw myself backwards and bumped down the stairs. If he hadn't run to me, I would have fallen head first on to a slate floor.
I can live with most of the symptoms of CFS. I take medications to alleviate many of them. But there is no pill that will give me more energy. And there is nothing they can do about the damage that CFS has done to my brain. That's the scariest part of CFS. They don't know if it will progress or not. The damage can't be undone so I won't get better.