This disease is so odd, the way it evolves over time. For the first three years of ME/CFS, I would crash if I drank coffee. Even decaf. And believe you me, I tried many many times, such is my love of coffee. I kept thinking, "oh, the last time was a fluke. I just happened to crash right after drinking coffee It will be different this time." It took about 8 to 10 experiments before I finally accepted that I couldn't drink coffee.
Recently, I've tried it again, starting with decaf, and all of a sudden I can drink it again without crashing. I don't know if that means I should, but I just can't emphasize enough how nice it is to know that I can if I want... at least occasionally.
[1/27/15 update: I am no longer able to drink coffee. That only lasted about 5 months.]
On the bad side of things, that aching in my kidneys that had gone away for so long is starting to come back again.
That's how it seems to go with ME/CFS for me ever since I got it. One issue will resolve itself, but another will arise. Often it feels like a zero sum game.
When I get aching in the kidney area it makes me think of the adrenal glands. Which makes sense if you're drinking coffee, which I believe stresses the adrenals.
ReplyDeleteBut it's funny you mention coffee drinking. I too can now drink coffee, along with Coke, two things that for the entirety of this illness (almost 2 decades) would cause a strong and quick crash. So this is a huge improvement.
But while the coffee and Coke no longer destroy/crash me, they definitely hold me back from further improvements. So if I'm going to continue to get better, I really need to stay off them. It's just that being able to drink these things and not pay a huge price is like having a super-power compared to where I was just a few months ago.
I forgot to add my name on the comment I just posted.
ReplyDeleteIt's Greyson James, I've left comments in the past here.
- Greyson James
Coffee is a real tricky one - Sometimes it makes me sweaty and jittery for hours, sometimes I just don't stop talking for about ten minutes and then crash really badly. Sometimes I feel fine, but every time the soy milk makes my poor tummy triple in size.
ReplyDeleteAs a fellow ME sufferer and coffee roaster, let me congratulate you on your return to coffee! I discovered your blog a month or so ago and have been enjoying your posts. It's nice to know I'm not the only 30-something male suffering from this thing! --frank
ReplyDeleteHave you had a CT scan done of your abdomen? I wonder if you have kidney stones. I get a similar pain off an on and I have recurring, tiny kidney stones. They don't show up on ultrasound or X-ray, but are visible on CT scans.
ReplyDeleteYou may try buying some reagent urinalysis strips at amazon.com and checking your urine for blood during the times when you get these pains. If blood is showing up in your urine, it's possible that you're passing small stones. I can tell you from experience that the smaller stones do not cause the same extreme, colic pain that the larger stones cause as they pass through the ureter. They can just cause a dull ache in the kidney area.
Do you have any idea what the aching in your kidneys is? I've been having terrible aching in my kidney area for about six months, but I think it's related to my bowels.
ReplyDelete