YANMD - But What Is Wrong With Me?

August 26, 2024 8:36 AM

18 months ago I wound up in the ER with a kidney stone: I then spent 6 months trying to pass it (long story), during which time I was extremely tired, and even after light exercise - like walking - I was extremely fatigued the next day. It turned out the stone was stuck, so I ended up getting surgery, and assumed the tiredness/ exercise problem would stop, but it hasn't, and now here I am at the end of my rope, 18 months later.

Full details:
During the 6 month period between diagnosis and surgery, I slept way too much, needed a 1hr nap every day in the afternoon (these were "I must lie down because I'm going to fall asleep right now" naps), and even if I went out for a walk, the next day felt like I'd run a 10K: before all this I was in good shape and hiking regularly. I had the surgery and bounced back from that pretty fast, but the tiredness/ naps/ exercise problems persisted, so I went back to the hospital 2 months later and had a full panel and CT scan done, but nothing untoward was found.
In the past few months the nap problem has started to subside, but - coming up on a year since the surgery - I still sleep too much and can't exercise for love nor money: I was trying to do 30 mins of cardio every other day, but kept getting a cold (sneezing, tiredness/ fatigue, dehydration) and having to recover from that, so I cut it down to 20 mins, and now I'm not getting a cold afterwards, but I'm still getting extreme tiredness such that I need to pretty much write off the next day. 18 months ago I was doing day hikes and climbing mountains, and now I can't do 20 mins of squats, stretches and jumping jacks without being hit hard the next day: what's going on? I don't even know what type of doctor to turn to now, and - given the previous clear panel and CT scan - I'm not sure what another round of testing could show.
I can't begin to explain how infuriating all this is - that the thing I'm supposed to do to keep me healthy makes me sick - and I feel like I'm banging my head off the wall, but what else can I do: not exercise at all?

posted by 7 Minutes of Madness to Health & Fitness (12 answers total)

What did the full blood panel include? Thyroid? Blood glucose? Vitamin D levels?

I would recommend taking this issue to your PCP/GP (or equivalent) and asking them to help you rule things out. Have you had COVID? It could be a whole lot of things, some more serious than others, but it might take a while to find it. Keep testing until you can narrow it down.
posted by fight or flight at 8:42 AM on August 26 [3 favorites]

Do you have a primary care (family) doctor?

This could be lots of things - a vitamin deficiency, honesty Covid comes to mind, also autoimmune diseases. You’ll need a doctor who will gradually rule things in or out through diagnostic tests as well as referrals, so you want that “air traffic controller” not a hospital.
posted by warriorqueen at 8:45 AM on August 26 [5 favorites]

Best answer: Exercise intolerance/post-exertional malaise is a symptom of some conditions like POTS, Long COVID, and others. You might try googling those terms and asking your doctors about them.

In the meantime, consider not pushing yourself to exercise — it may be doing more harm than good at this point. Folks who suffer from these conditions talk about staying within their “energy envelope” - in other words, monitoring activity carefully so as not to cause a crash. Here’s some info about that approach.

I’m sorry this is happening to you — I can only imagine how frustrating it must be. I hope you’re able to get the help you deserve.
posted by ourobouros at 8:46 AM on August 26 [19 favorites]

Best answer: I was trying to do 30 mins of cardio every other day, but kept getting a cold (sneezing, tiredness/ fatigue, dehydration) and having to recover from that, so I cut it down to 20 mins, and now I'm not getting a cold afterwards, but I'm still getting extreme tiredness such that I need to pretty much write off the next day.

Seconding ourobouros that this is absolutely classic post-exertional malaise. Kidney stones do not cause PEM; something else is going on. (Probably a post-viral syndrome.)
posted by heatherlogan at 8:56 AM on August 26 [6 favorites]

Came here to say that the kidney stone was likely a red herring, but others have beat me to it. But as someone who has had a couple of large stones that needed surgical intervention to pass, I also have to say that I'm shocked that your HCP let it go that long. Both of my stones were removed within days of symptom onset.

You said it was a long story, so I'm sure there were other factors in play, but I did want to mention that length of time is abnormal, in my individual experience.
posted by merriment at 9:07 AM on August 26 [3 favorites]

What you're experiencing absolutely sounds like an after-Covid response. I had the same symptoms for about 6 or 7 months after I had Covid the first time. I count myself lucky that it didn't last longer.
posted by cooker girl at 9:14 AM on August 26

Definitely look into long COVID. Even if it wasn’t specifically COVID, a primary care physician that takes long COVID seriously will also take seriously other post viral syndromes.

My post-exertional malaise was not as bad as yours but lasted more like 20 months; I was just finally feeling able to be active when I got Covid again. Turns out that treating it aggressively (paxlovid even though I’m younger than the nominal age, and couldn’t get it during the earliest window) seems to have saved me from another long post viral bout.

But this wouldn’t have been possible without a primary care who believes my symptoms and works on post viral syndromes.
posted by nat at 10:17 AM on August 26

Nthing long covid/some other post-viral syndrome - I had long covid for ~3 years and still sometimes get symptoms. The PEM plus sneezing is totally characteristic of LC for me.

This was my guide to understanding it (long covid and ME/CFS are flavours of the same thing - post-viral conditions).
posted by penguin pie at 11:04 AM on August 26 [1 favorite]

I have had anemia and a vitamin D deficiency present exactly like this, and that would be a very easy blood panel to run.
posted by moosetracks at 11:59 AM on August 26

I must suggest, have you had calcium tested? A relative kept getting stones & had fatigue. The cause was an easily treated parathyroid tumor which causes high calcium levels.
posted by dog-eared paperback at 1:08 PM on August 26 [6 favorites]

It's worth getting iron tested even if your CBC doesn't show you as being anemic. I wasn't anemic, but had a pretty severe iron deficiency when I finally convinced my PCP to test for that. I felt so much better after awhile of being on iron supplements. (I was also wildly low on Vitamin D as lots of people in NEw England are and also B12, but getting those levels up didn't make a difference for me, though I know some people do feel better when those things are addressed.)
posted by litera scripta manet at 1:19 PM on August 26

Just wanted to add that this is how my severe sleep apnea presented. (No kidney stone, but the increasing intolerance to exercise and fatigue.) The great thing about sleep studies now is that you can often do them at home (just one night) and they are conclusive -- you have apnea or you don't. (The type of apnea can be a little more complicated, and there can be other issues of course, but I found it very comforting that the test yielded a simple yes or no answer.) Your PCP can likely prescribe a sleep study or direct you to a sleep doctor who can.
posted by CiaoMela at 2:09 PM on August 26 [1 favorite]