I always get pain in hands and feet before or at beginning of a flare ...
It's like an intense nerve tingling / aching and crushing feeling ..
Do others get this ?
Do we know why it's hands and feet ?
What you're describing is peripheral polyneuropathy. You should see a neurologist. I had PN for years and didn't know it. It begins at the tips of your fingers and toes (that's the tip of your peripheral nervous system) and works its way up your limbs toward your central nervous system (your spinal cord and brain). This is why it's described as having a "stocking and glove formation"--meaning, it occurs where you'd be wearing socks and gloves.
Mine was discovered when it reached my knees and elbows, so it was pretty far along. It went undetected because, as it turns out, you don't need to have tingling, and the numbness can be insidious. I didn't have tingling at the time (I do a little now) and I had numbness, but didn't know it. So when doctors would ask "Do you have any tingling or numbness?" I'd answer "No", and apparently that was enough for them to rule out peripheral neuropathy. So they'd always try to refer me to a rheumatologist. (I didn't have any rheumatological disease). I actually went to see the neurologist for headaches and sleep problems. I told him about the pain I was experiencing in my arms, hands, legs and feet, he did his tests, then sat back and told me. I was pretty shocked.
I'd had significant pain in those areas at the time--throbbing, aching or stabbing pains--especially at night. Then after treatment began I had more tingling sensations, as well as strange heat sensations and deep, unscratchable itches, which I still get. I also get occasional pain and numbness, or like someone just stabbed a toe with a needle. My neurologist believes that part is permanent damage. But it's now only in the tips of my fingers and the top portion of my feet, having healed after several years of treatment.
PN can be caused by many things, and many of those things can cause fatigue. Sometimes there are no answers and it's deemed "idiopathic". But a load of tests might help you figure out an underlying cause for it, and thus a treatment.
It turns out that part of my underlying problem with CFS/ME was a really rare and not well-understood Vitamin B12 metabolism disorder, likely genetic. I'd begun having problems with B12 when I was about 18 (I'm now 43) and they didn't understand it, nor was I properly treated until 5 years ago. It was my neurologist that suspected the PN was associated with B12, even though my serum B12 tests were normal. I'd had mild macrocytic anemia that would come and go, but with metabolism disorders, the serum tests look normal because they check for the B12 that's in your blood, not in your cells. And a metabolism disorder is a problem within the cells.
Only through experimentation were my doctor and I able to be sure that it was a metabolism disorder. He initially gave me the standard treatment of B12 injections of once per day for 7 days, then once per week, then once per month. It didn't work. I did some research about metabolism disorders and decided that I'd need a lot more. So I took 1 injection every day for 30 days, then 1 injection every other day for two months. My neurologist then did his exams and....it worked.
So now I'm on a lifelong maintenance dose of 1 injection every two days. My anemia is gone, my PN is improved and fatigue improved. My hematologist tested me for a genetic explanation and I do have a mutation on the MTRR gene, but she, and an expert from UC Davis and my genetics team, are unsure if that's the cause of the metabolism disorder. We just know I have one.
I still have quite a bit of fatigue, and it's possible that 20 years of B12 deficiency did its damage. But I'm definitely better now than I was before I began that treatment.
