I thought that today I would share with you a list of my symptoms. In doing so I hope you can understand ME/CFS illness a little better. Some of this may be T.M.I. but it is my reality.
In my 11 years of having ME/CFS I have had many, many symptoms. They vary widely and are more severe and diverse the sicker I am. For those who may wonder what it looks like to have this illness here is a list of what I personally have experienced. Some of these come and go. Some are always there but vary a lot in degree of severity. I almost always feel better in the summer and worse in the winter. Not all of these are necessarily caused by ME/CFS but they are all certainly impacted, or made worse, by it.
Symptoms I have Always:
Extreme fatigue/no energy/no stamina
Thyroid issues – hypothyroidism, Hashimoto’s disease, thyroiditis
Can’t exercise or do anything physically or very mentally exerting or will be wiped out for days (Post-exertional Malaise)
Have trouble thinking/brain fog/can’t focus or concentrate, can’t remember things
Cold – get cold very easily – numbness then burning pain in feet and fingers – Raynauds (I got frostbite from sherbet in August once.)
Sleep is messed up – can’t fall asleep or fall asleep but keep waking up, or both
Don’t feel like eating/not hungry especially in the morning, full quickly
When I eat usually crash afterwards, like my body has to shut down to digest
Stiffness in joints in the morning or after sitting for a while and pain/aching
No sex drive
Lose a lot of hair and thin eyebrows (most likely thyroid related)
Can’t wake up or get up in the morning
Low blood pressure
Low body temperature
Allergies – increased food allergies (and sensitivities) and seasonal allergies
Dizziness (especially when standing up from lying/sitting/bending over) (orthostatic hypertension)
Ringing in ears
Slow healing of cuts and bruises
Shallow breathing and then sigh/breathe deep often, shortness of breath
Easily overwhelmed by sound or flashing lights
Vitamin and mineral deficiencies – D, B12, Iodine
Ridges in nails
Vision problems – dry eyes, problems seeing at dusk
Cherry angiomas – developing more
Always thirsty despite drinking tons of water (and always needing to pee as a result)
Back muscle knots/pain (gets aggravated for several weeks then subsides)
Jaw pain, stiffness, teeth clenching and grinding in sleep (gets aggravated for several weeks then subsides)
Sore throat (comes and goes)
Headaches (come and go)
Symptoms the come and go/When I am feeling less well:
Joint pain – jumps around; ankles, knees, hips, wrists, hands
Muscle pain and/or burning sensation
Muscle twitching and/or involuntary jerking of muscles
Unconsciously clench/contract muscles and hold them that way
Extreme muscle weakness – feel like I can’t brush teeth, write, feel like my body is so “heavy” when I’m walking or going up stairs, feel like my legs will give way etc.
Can’t finish thoughts, brain quits on me
Gas, nausea, heartburn, lactose iritability, digestion issues, blood sugar issues
Pangs/pains in chest (sternum)
Occasionally pass out (like once every other year)
Don’t want to/can’t go anywhere or do anything.
Feeling of pressure or swelling in my neck/thyroid
Fluttering in my chest/heart palpatations
When I am feeling dreadful:
Can’t move from the couch all day
Can’t think at all
Conversation exhausts me
Skin hurts to touch
Feels hard to breathe
As you can imagine, my life is severely impacted, and my ability to function at a “normal” level impossible, as a result of this illness. I can’t even remember what it is like to be normal anymore. If I can accomplish a few small tasks in a day I am happy.
I know a lot of these symptoms fall under a lot of other illnesses and diseases. Combine them all though and ME/CFS is the illness I have been diagnosed as having.
*Please note, this is not an official list of ME/CFS symptoms. Here is one. If you suspect you have ME/CFS see a knowledgeable doctor (preferably one with experience dealing with ME/CFS).