Originally Posted by
MoAlpha
To put some bounds on the discussion, here are the Institute of Medicine criteria for chronic fatigue syndrome, as summarized and expanded by the CDC. No one who is able to ride a bike for the hell of it could possibly qualify. Incidentally, the politically correct name for the syndrome is now, “myalgic encephalomyelitis” (ME), and if you tell someone from the ME community you think their condition is stress related or anything but an inflammatory disorder, they are likely to react quite negatively.
Sounds like personal experience. I know the feeling. My symptoms tick every box in the ME/CFS checklist. But not a single doctor I've seen has ever given any credence to the existence of chronic fatigue syndrome in any form as an entity apart from other causes. They've always insisted there are other root causes for those symptoms.
The tricky part is finding a doctor or specialist to actually take the time to dig into those hypothetical underlying causes.
In my case it was primarily due to Hashimoto's, a pesky auto-immune disorder that mostly characterizes hypothyroidism. I had surgery in November to remove a cancerous thyroid lobe. By that time it was distorting and crushing my esophagus and trachea. Now I can swallow solid food again with gagging. I still don't feel much better, nowhere near my level of fitness of this time last year. But it'll take awhile to recover. I'm just impatient.
And not a single neurologist has agreed on the reasons for the lifelong severe headaches: migraine, cluster headache, trigeminal neuralgia, they dunno. And they lose interest quickly when there's no apparent cause, or when I didn't respond to the various meds: ergotamine derivatives like cafergot, Imitrex, valproic acid, etc. Only beta blockers like metoprolol seemed to help. Personally I think it's due to chronic sinus congestion from allergies. When I got pumped full of prednisone and antibiotics last month the symptoms and severity of headaches eased up.
Where my symptoms differ from those described by some folks suffering from ME/CFS is that my chronic pain does respond to exercise. I have to be careful to warm up and cool down gradually, but in between I can do some reasonably hard workouts and even interval training. The best I ever feel is during those times, and for a few hours afterward.
But every morning I wake up in pain and it can take hours for it to ease up enough to get moving. It's frustrating but I've never found a doctor in more than 40 years of looking who's particularly interested. They look for single issue root causes and figure that will cure the symptoms they regard as byproducts of whatever the organic cause might be.
And they might be right. Almost every time I've second guessed my doctors I've been wrong.
Also, a lot of my chronic pain is from injuries -- mostly neck, back and shoulder. There may not be much anyone can do about that, other than anti-inflammatories. I have prescription pain meds but try to avoid using them unless nothing else works -- the stuff makes me too drowsy to function. They're offered gabapentin but it did nothing for me. It's not the type of neuropathic pain that gabapentin can help with. Kratom helps without drowsiness or noticeable side effects but the FDA is threatening to ban it and the VA, where I get medical care, seems to regard it as a "recreational drug." CBD hasn't helped me but others report it helps them.
It's a chore but I'm fortunate that I'm able to get some exercise and that it does help for awhile. I've met some folks who are too miserable or disabled to do the kind of aerobic exercise that seems to help me.