Symptoms

My notes to you- you can skip the italics and go right to symptoms if you want.

There is a huge range in the experience of ME/CFS. For the first year and a half that I had it, I didn't know I had it. I just felt like maybe I was getting older, I hadn't felt quite in my best shape since getting a bad viral illness (norovirus) that had a long recovery. The original illness was so bad I couldn't walk properly for more than two weeks afterwards. After that I got sick a lot for months (felt horrible and achy, needed to go to bed). I was randomly overwhelmed by noise, a conversation, too many people talking, a movie, random things. I went to my regular workout every week, but I collapsed at two of them... and then I was okay the next week. I would suddenly feel like I needed to sit down, even if the only place was the floor. I had trouble sleeping. I had more headaches than usual, and they were bad. I was more sore for longer after workouts.

Then, like many of us I had a sudden shift a year and a half later. I pushed through feeling strange and bad at a huge event. By the time I left, I could barely walk and was crying uncontrollably from being overwhelmed and exhausted. An hour later I couldn't lift my arms. That was May, 2017. I became bedridden and have basically been in a wheelchair since, though I have improved a lot since that day.

You can be anywhere from where I was at first, to unable to roll over in bed. The people who have it the worst need feeding tubes, constant dark and silence and minimal sensory input. The people doing the best can go to work but are wiped out all the time and spend their time off resting. Wherever you are, you can get worse by overdoing it. NEVER "PUSH THROUGH".

The links below show the symptoms. Keep in mind you may not have all of them, and you probably don't have them all the time.

Scale

There is also a huge range of severity. See the hummingbird scale (downloadable attachment at bottom of the page). There are many ME/CFS severity scales and they are all different. This is the one I find most detailed because it separates cognitive and physical. My one issue is it doesn't account for a reclining wheelchair, which lets severe people get outside more and for longer.

Hummingbird ME Ability Scale (still here thanks to the Internet Archive)

This is the best ME/CFS scale I have found and has separate scales for cognitive and physical. Printable PDF version at bottom of this page.

ME/CFS is defined as the following symptoms for more than six months (which means a lot of Long Covid folks qualify as having ME/CFS after 6 months of Long Covid symptoms)

Handout for Doctors

Symptoms Links:

CDC list: https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

NIH https://www.nih.gov/mecfs/about-mecfs

International Consensus Criteria pdf is downloadable below. I highly recommend looking at this because it has way more on it. Sometimes doctors will give you a hard time if you list too many symptoms, but if you basically just highlight what you see on that list it looks less weird to them.

These symptoms usually follow a viral illness, often getting worse with a second viral illness and/or push in activity.

The Institute of Medicine's Diagnostic Criteria

Do I have ME? (a questionnaire based on the Consensus Criteria).

It is important to note that with ME/CFS many people only have some of the symptoms. You might have all physical ones, but minimal or no mental, or all mental, but not too bad physical. You might not have all the physical symptoms (I never got a sore throat or swollen lymph nodes). According to Dr. Chia and others, the condition seems to target what people were using when they first got sick and overdid it. So accountants who were doing taxes can’t add, runners can’t use their legs, etc.

The main symptom common to everyone is PEM (Post Exertional Malaise). This is a crash after physical or mental exercise, overstimulation or stress, that causes stronger symptoms from that list and isn't immediately fixed by rest. Longer rest helps eventually. PEM can happen from 0-72 hours after activity.

It is important to note that symptoms come and go. If you overdo it and get PENE (post exertional neuroimmune exhaustion) formerly known as PEM (post exertional malaise) you will be more symptomatic. If you have CFS/ME mildly enough, you may just feel like you are getting older or aren’t quite in top shape anymore most of the time, and then get worse symptoms sometimes if you overextend.

It can feel very random, especially since PENE can hit from immediately to 48 hours after exertion (which I think is if you kept going without really resting post-exertion). Symptoms can go from mild to the point that people can’t roll over in bed easily, need feeding tubes, need constant darkness and can’t handle any sound or even reading.

I have a friend with ME/CFS who is also being treated at Stanford who experiences bouts of ME/CFS between periods of feeling normal. These relapses seem to happen on an almost predictable schedule. This is uncommon, but it happens.

The most important thing: if you don’t rest and pace so you don’t have a PEM crash, symptoms get worse and more frequent overall. This can cause you to get worse over time.

My video on getting a diagnosis

SYMPTOM BREAKDOWN:

PENE (Post Exertional Neuroimmune Exhaustion) formerly known as PEM (Post Exertional Malaise)

The defining symptom of ME/CFS. If you don't have this, you don't have ME/CFS.

This is the crash that happens 0-72 hours after you overextend yourself. Depending on your baseline it could be all kinds of things, but is generally a worsening of symptoms.

For me it can mean needing to be in bed, not moving with the lights out. At worst I get light and noise sensitive with a horrible headache, can’t read or watch things, and can only handle an audiobook I’ve already read (if that). If I am over-tired I stutter and slur words and lose various abilities (like the ability to read).

For others who are more mild it might mean muscles are sore, tired, less able to do things, more mental fog. In either case, the more and the better you rest the sooner it will go away. But you have to rest a little longer than you think. It could take a day or it could take weeks or even months to recover from a PEM crash. When you start to feel better, take it easy for another day or two or you can crash right back.

Things that give you PENE

-“Pushing through” (physically, emotionally, mentally)

-Physical Exercise (depending on how bad you have it this is anything from rolling over in bed to actual exercise)

-Stress

-Less rest/sleep

-Sensory overload

-Emotional Overload

Some personal warning signs that tell me I am overdoing it and should rest BEFORE I get PEM (but you may have different ones):

-A sunburned feeling on the face

-A swollen feeling in the tongue

-A mild burning sensation on the top of the head

-Dizziness (from orthostatic intolerance- blood not getting to head)

-Breathless

-Suddenly feel like you need to sit or lay down

-Feeling of being overwhelmed (noises too loud, light too bright, conversation too hard, movie too difficult to watch)

-After going too fast and too much (sudden activity): A gag reflex, retching, that can bring me to my knees (others shared similar experience)

-ears ringing

Any of these mean you need to rest right away, including your brain and senses. DO NOT PUSH THROUGH IT or you will get PEM.

"Fatigue not alleviated by rest" is one the symptoms lists as a main criteria. I had a problem with this, because if you rest for hours, days, or weeks it does get better, it just doesn't get better the way it normally would with normal levels of rest. The fatigue you get is unlike regular "tiredness" or normal "fatigue". It's a whole new level. It can mean needing to rest in all your free time just to function. It can also mean having rest on your way across the house, or having to crawl to the bathroom, or at the very worst (more rare) being barely able to roll over in bed.

Muscle Soreness/Pain/Failure

This can be for whatever muscle you are using too much without rest, or all over.

Any muscle you use too much will go through the same cycle as an intense workout: sore, very tired, spasming/cramping, and failure. Don't get there. Stay on this side of sore. Muscles that are overworked will also be sore the next day as if you were exercising hard. It used to be that for me just sitting up for any length of time will cause this in my neck and torso.

I have managed to do tiny exercises to keep my legs in tone (just doing minor seated daily tasks is enough for my arms), but they are _tiny_ (like 15 plies and relieves) and I stop when it starts to get a tiny bit sore. You CANNOT EXERCISE NORMALLY. Nothing that raises your heart rate. It will damage you (see media and doctors sections for details and sources).

If your legs are collapsing you used them too much. If your hands are seizing up, you used them too much, etc. Pace your muscle use and you will be able to do more without wiping them out.

It can feel like you body is made of wet concrete you are trying to move around.

Orthostatic Intolerance (light headedness or vertigo when standing). This is because your heart isn't working as well to pump blood up your body to your brain. It means less blood in the brain, which means dizziness and trouble thinking as clearly. Not everyone with CFS/ME gets this (but I do).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5772628/

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-019-1935-y

Mental Fog/Cognitive Impairment

There are SO MANY ways this can make your brain not work. Having a mental fog, where your brain just seems stuck in neutral is typical. Having your brain lose a name or train of thought, or "skip" is normal with ME/CFS. More disconcerting is that if you overdo it, you can lose abilities for a period.

It can also feel like you are "underwater" or at a weird distance, of muffled or drugged.

Nervous System not working properly

Another thing I have experienced and others have mentioned is the sensation that they are operating their fingers or even legs with a "broke mousepad". Like the signals from the brain to the body are getting mangled and it makes you clumsy.

Gut Inflammation

Digestive issues are common with ME/CFS. Dr. Chia says they are most often in people who started their ME/CFS with something that effected their gastrointestinal system. He recommends a supplement for this (in treatments section). It worked for me completely.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/

New Headaches.

The CDC and Consensus symptoms mention “new and more severe” headaches. These are the ones I get and know others with ME/CFS get in more detail:

-migraines (light sensitive, make you feel like you are going to throw up if you move)

-cluster headaches (more behind one eye/temple, often more painful than migraine, also light sensitive, sometimes makes eye or nose run

-“60 second icepick” is my name for the stabby one that only lasts for 30-60 seconds.

-“fire headache” is my name for the one where the top and maybe sides of your head feels sunburnt or hot. When this is mild it warns me I am overdoing it, but it can also get severe to where my head feels like it is on fire.

Anxiety and Depression

Many people with ME/CFS get this new with ME/CFS. Like the other symptoms, it gets worse when you push it (physically, mentally or emotionally). Stress is another way of "pushing it". I was lucky, I already had both and for some reason they both got better with ME/CFS.

Suicide rates are higher in ME/CFS patients (people with ME/CFS die of suicide at a younger age than average suicide rates). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/

If you are experiencing suicidal thoughts, anxiety or depression please seek professional help.

My own advice is to appreciate the little things and the things you can do like your life depends on it, because it does. The more you focus on the positive, the more positive you can see.

Difficulty Sleeping

It's ironic, but as tired as we are, it can be hard to actually sleep and stay asleep. Night sweats are common, as is waking up between 2-4AM and not being able to get back to sleep.

Shortness of Breath

Pretty self explanatory, but often not mentioned in lists of symptoms despite findings. Also Air Hunger. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209305/?fbclid=IwAR39_kwLs4TYdW_oAcgTsiqR1ybht7HxaKU-vNLvzwYB93U7hlD2c_ysx34

Mental/Emotional/Sensory Overstimulation:

Feeling of being overwhelmed (noises too loud, light too bright, conversation too hard, motion hurting brain, movie too difficult to watch). Literally your brain feeling like it is being hurt. Time to lay down in a dark, quiet room for a while to avoid a headache or PEM.

I got overstimulated going to a museum in the reclining wheelchair and I lost the ability to read. I knew I was looking at letters and words, but they made no sense. I stutter and slur when I overdo it. Others have lost the ability to add simple numbers. The more tired you are, the more symptoms, including mental ones you will get.

You have to rest your brain as well as your body. This means from mental exercise, but also stimulation (sound/light/noise/motion/stress). The prescription drug that got rid of my mental fog was Abilify (see treatments section).

Adrenaline Surges (Racing Thoughts/Racing Heart)

You can get into an almost manic state, or fight/flight for hours at a time. This is of course terrible for resting and pacing. Sometimes it can feel like (or be) Anxiety, but often it is different. I have beta-blockers I take when my heart won't stop racing.

Internal Vibrations

Feels like you are vibrating inside

NOTE

Whatever you use too much will stop working. Take mini-breaks to rest. Rest your fingers if you are typing. Rest your brain, rest your emotions, rest your body. Little breaks will enable you to do way more without a crash, but you still need big breaks too or you will still crash eventually.

Other symptoms I have or see often on ME/CFS forums.

-air hunger (feeling of needing more air even when oxygen levels are normal. If you get this I suggest getting a little finger oxygen/pulse meter and checking. It is peace of mind if oxygen is normal, and if it isn't... you might need to go in to the hospital.

-toenails growing with ridges (apparently a sign of inflammatory disease)

-tiny shooting pains in fingers and toes, like nerve pain

-night sweats

-waking up at 2-4 AM and having trouble getting back to sleep

-the feeling like your motor skills are controlled by a broken remote, and/or you are wearing thick rubber gloves when you try and do something delicate

-red patch on back of base of head, or even a swollen spot

-mild constipation (big poop that's hard to get out. My acupuncturist attributes this to everything including the intestines being weak, which would make it harder for them to squeeze waste along properly. *try more water, apricots, prunes

-feeling sunburnt or burning on face or even all over body

-tremors

-sensation of internal vibrations

-shooting pains

Serious Neurological symptoms (numbness, tingling "MS hug", burning sensations, even seizures, etc.) and when I saw Dr. Bonilla at Stanford's ME/CFS clinic he said he had seen it all in just ME patients and more (seizures, spasms, etc.). H e also said that the neurologists didn't believe him and said his patients must be faking.

-MS "hug" feels like you are being crushed around your abdomen, like bangs tightening and squeezing you. Can go on for hours. It's supposed to be just an MS thing, but I ruled out having MS and I've had them three times. Dr. Bonilla said he has had other ME/CFS patients with it and I have heard other severe ME people online mention it.

For context on severe ME/CFS:

Extremely Severe ME/CFS—A Personal Account by Whitney Defoe (link to text)

Common Co-Morbidities (conditions that often go with ME/CFS)

*treating these separately can lead to an overall worthwhile improvement that you can add to your pacing and ME/CFS treatments if you have any.

Common co-morbidities with ME/CFS list on MEPedia

My list as gathered from multiple sources:

Cardio Vascular Disease . . See also this study.

MCAS Mast Cell Activation Syndrome.

Fibromyalgia

POTS (Postural Tachycardia Syndrome) and Orthostatic Intolerance

IBS (irritable bowel syndrome)

Raynaud's Syndrome