It was one of the most frustrating, long lasting and debilitating symptoms. It is a strong warning signal from your body that something is wrong. This is how I would describe it to friends, family and doctors to try to have them understand it:
Imagine you have a flu with high fever, malaise and bodyache that makes you want to curl up in a corner and die, but then 24/7 for years with no end in sight.
I spent a fortune looking for viral and bacterial causes, but it only showed many of the usual past infections (CMV, EBV, Coxsackie, HSV1, Mycoplasma pneumonia, etc.) and was a dead end in my case. Lyme and all its coinfections would definitely be one to check for.
This is just my own experience and opinion... It is not necessarily the virus, bacteria or toxin that makes you feel so bad, but your own body's reaction to the insults and damage, forcing you to stop and rest. The bodily insults these days can come from so many directions as we are constantly bombarded with toxins through air, water, EMF, food, medicines, excess sugar, on top of the viruses, fungi and bacteria that our immune system normally should be able handle. But the chronic assault will set the immune system in a constant state of war.
Just one example of a cause, but an important one is when your microbiome is out of balance, not only are you fighting the excess pathogens and the toxins they release, but you also have less of the beneficial critters that help our immune system, help break down food, help in vitamin production, etc. A vicious cycle that takes a number of actions, determination, patience and time to rebalance.
But also important is that unless insults that you have control over are also stopped or minimized, your body will still feel like it is under attack. And it remembers and can overreact. If I am not careful still, and eat or drink something with chemicals my body 'remembers' as intruders I get a stern warning. If I overdo things and forget to meditate or rest I still get a strong warning signal.
I am of the opinion that every little action can help calm the system. But once hit this bad, you have to be very careful even when you start to have better days.
ljimbo423 comments on microbiome, mitochondrial support and the PEM Buster list from Hip are a big help.