Extreme sleepiness

[swingdancer]

Hello, this is my 1st time posting. I have Type 1 diabetes as well as CKD, Stage 3b.

I'm 72 y.o., with a gfr of 44 (as of 6/13/24 -- it decreased from 79 the end of Feb. and 54 mid-April). I saw a nephrologist for the 1st time on 6/14.

I've been experiencing extreme sleepiness (not just fatigue) for quite some time. I had been dealing with it by drinking a lot of diet Coke until I saw my endocrinologist last week, who told me that any kind of dark cola would make my kidneys much worse -- so I stopped the diet Coke right away. Since then, I tried Crystal Light w/ caffeine in my water bottles (my endo's suggestion), which does nothing. The last few days, I've been trying No Doz 100mg caffeine tablets. One tablet does almost nothing, so I increased to 1 and 1/2 (150mg). I'm not jittery, but my head feels kind of strange and, unless I take it with food, I get quite nauseous.

Wondering if any of you have any suggestions? Thanks!

[Sapphire187]

Have you been tested for Anemia? When I was stage 3b I had anemia and my hemoglobin was down to 8.5, Hematocrit was 27 and RBC’s 3.0. I was very tired all the time, needed to take naps and had trouble breathing on exertion. I had to have iron infusions 10 times and EPO injections for 8 months before my numbers improved enough for me to feel better. I still have anemia , but I get an EPO injection every month to help keep my numbers up. Just a thought.

[swingdancer in reply to Sapphire187]

My labs on 6/13/24 showed Hemoglobin, Hematocrit and RBC all in normal range, so not anemic. But thank you for your suggestion!

[Bassetmommer NKF Ambassador]

Yes, no colas..... however, it is the phosphorous in it that is the issue. But soda is just not good for you. There is something else going on that drinking caffeine products is not the good answer. How is your Vit D? Vit B 12. You already answered about anemia. The other thing is to look at your sleep. Do you have apnea? Are you getting up multiple times to pee? All those things will make you tired. How's you sugar levels? I am sure with Diabetes 1 you are aware of the impact of glucose levels.

[swingdancer]

Thank you so much for your thoughts! My Vit D and B12 haven't been tested - maybe I can ask my primary care doctor to order those. I don't have sleep apnea, but do have to get up around 3 times/night to pee. The nephrologist wants me drinking a minimum of 4 large bottles of water (~65 oz)/day. I try not to drink anything after 4:00 pm. It makes me wonder how other kidney patients do this without having to get up to pee overnight?

My A1C is 8.0 right now -- that's a new high for me and I know I need to work on getting it lower, but my endocrinologist isn't overly alarmed given the kidney problems. And, once again, I'm not so much fatigued as I am sleepy. For what it's worth, I try to exercise at the Y at least twice a week (either swimming laps or walking on the treadmill at a fast clip), but I'm not able to when I'm so sleepy.

[Bingo88]

Hello swingdancer. 1 of the common symptoms of ckd is tiredness and fatigue and if your body needs rest. That's what it will do. I very often can have days when I fall asleep 4 times a day. Don't even remember dropping off to sleep and then it throws your night time sleeping out. Everyone seems to suffer with the problem in the uk

[swingdancer]

Thanks Bingo88, it's comforting to know I'm not the only one feeling so sleepy. I just wish there was some way to fight it in day-to-day living. As an example, I have to drive to physical therapy 2x/week -- it's a 50 minute drive, and I literally have to keep slapping my face to stay awake (along with listening to music at the highest volume).

[GoodHealthIsAJourney]

From what I understand, you're suffering from sleepiness, not fatigue. Is it better once you nap? How many hours do you sleep at night? Have you had your sodium, calcium and thyroid checked? Your A1C is high, and if you've never been this high, it can also make you sleepy. Work on getting it down a bit to see if that helps (your kidneys will thank you, too!). And make sure your doctor knows exactly what you're feeling (bring in a sleep diary, if possible), and don't let them dismiss you. Good luck, and keep us posted!

[swingdancer in reply to GoodHealthIsAJourney]

I've actually tried NOT to nap during the day because I thought it would keep me from falling asleep at night, but maybe I'll try it after jflorax messaged me that she/he takes 30 minute "cat naps" that get her/him "through the day." It's hard for me to figure out how many hours I sleep at night since I wake up to pee and then have difficulty falling back to sleep. My thyroid and calcium are in normal range, but sodium was low when tested mid-June -- do you know what that means? Thanks!

[GoodHealthIsAJourney in reply to swingdancer]

Sodium is an electrolyte, and if your electrolytes are not in normal range, it can cause fatigue, nausea, muscle cramps, headaches and more. Do you know how low your sodium is and the cause (medication, etc)?

[swingdancer in reply to GoodHealthIsAJourney]

My sodium was 130 (said normal range 134-144), didn't say what the cause was. I'll google my meds to see if any can cause low sodium. Chloride was also low: 95 (normal 96-106) -- is that also an electrolyte? Funny you should mention nausea -- I'm frequently nauseous during the day.

[GoodHealthIsAJourney in reply to swingdancer]

Yes, chloride is an electrolyte. I've seen small changes in sodium have noticable effects. Make note of all your symptoms and let your doctor know!

[swingdancer in reply to GoodHealthIsAJourney]

Unfortunately, I'm not able to contact my nephrologist whenever I want -- my next appointment isn't till the end of Oct. When I saw him mid-June for the first time, he had these sodium and chloride results, and I told him about the frequent nausea. He said that my kidney disease wasn't bad enough to cause nausea. I wish I could find a different nephrologist, but I'm in central Indiana and there just aren't any who are taking new patients (according to my endocrinologist and primary care doctor). Very disheartening...

[GoodHealthIsAJourney in reply to swingdancer]

Can you get in touch with your primary care doctor? Since it's probably not related to your CKD, the nephrologist wouldn't be of any help anyway. It could be medication, over hydration, etc. I hope you can get some answers and relief soon!

[swingdancer in reply to GoodHealthIsAJourney]

Thanks so much for your suggestions! When you talk about over-hydration -- the nephrologist said I was dehydrated, and told me to start drinking a minimum of 4 lg bottles of water/day (about 67oz). You had wondered if any of my meds could cause low sodium, and I found out online (Cleveland Clinic) that Lasix can do that. When I saw the nephrologist, I had been taking 40mg/day of Lasix (prescribed by my primary care doc for swollen ankles/feet). At the nephrologist's suggestion, I've cut way back to 20mg Lasix 3-4 times a week, and have been wearing compression socks (just so fashionable 😉).

[GoodHealthIsAJourney in reply to swingdancer]

Lasix would definitely cause this! Hopefully, your labs will have improved at your next blood test. And hopefully, you'll start to get some energy back and eliminate the nausea too. I do hope you try napping during the day - ideally not after 2pm, and not for more than 30 minutes. Since you're up a lot during the night, you're just not getting good sleep. I can relate! And compression socks can be fashionable! 😉 I don't have swelling, but I often wear them because they keep my legs from getting tired. They've got some great designs on Amazon - some just look like regular sock patterns, and others can be a little more fun.

Try and keep a log of how you're feeling every day. The improvement may be slow, and you might not notice right away. And don't hesitate to follow up with your PCP!

[swingdancer in reply to GoodHealthIsAJourney]

Thank you again, you've been so kind to follow up with me! I will try napping during the day, I've always tried to fight it before. As far as compression socks go... I don't mind wearing them at all with long jeans, but with capris or shorts when it's hot (like where I am)? I dunno...

[jflorax]

I feel you. I drink a lot of coffee. But I stay away from any energy shots etc. my GFR is 50. And so tired. I take cat naps. 30 minutes gets me through the day

[WildIris]

I have been quite tired lately too. When I sit down, I find excuses, like reading HealthUnlocked posts, not to get up and do chores. I'm also 72, as it happens, though I don't have diabetes, and sympathize with you for that. I do have to get up to pee every few hours at night. I'm trying out the theory that the body needs to move for about 5 minutes an hour, though the last time I got up was about 3 hours ago, so I can't tell you yet how well that's working. I also gave up all sweeteners and caffeine a few years ago (and feel much better overall), but that's not helping with this particular problem.

[CatOnACloud]

Just to rule it out, you might want to ask your primary doctor to evaluate you for narcolepsy. You never know and you do exhibit symptoms.

[CatOnACloud]

My mother is 77, has eGfr in your range, and often has trouble staying awake, especially when driving. Dhes been pulling over for short naps before driving home! No reason given or found other than the CKD. They are evaluating her for heart disease, but unclear what it will show…at least you aren’t alone 😁