A Tiredness Upon Waking And At Night:

[TOBEY32]

My recent testing didn't show anemia. Iron wasn't checked. Someone also suggested thyroid. After looking up symptoms though, I don't really see a correlation.
It's been about a good month now where I don't want to get out of bed - forcing myself. In the evening I'm ready to crash earlier than I really want to. During the bulk of the day (for the most part) I'm fine.
Maybe depression? Something has been bothering me. Only testing will eliminate things. - David

[Arleta]

My recent testing didn't show anemia. Iron wasn't checked. Someone also suggested thyroid. After looking up symptoms though, I don't really see a correlation.
It's been about a good month now where I don't want to get out of bed - forcing myself. In the evening I'm ready to crash earlier than I really want to. During the bulk of the day (for the most part) I'm fine.
Maybe depression? Something has been bothering me. Only testing will eliminate things. - DavidMy neurologist had me get a Fitbit about three years ago when I complained of poor sleep. I have tried all the usual things that help promote good sleep.... no caffeine, cool bedroom, limit screen time two hours before bedtime, no napping during day, etc. The Fitbit shows my sleep is interrupted by restless times all through the night. I also did a sleep study in the hospital, which showed no REM sleep at all that night. That makes you tired! My doctor thinks pain is making it hard for me to sleep. I still have not found a good remedy. I don't know if my issues resonate with you, but it might be good to at least think about how well you are sleeping. My sleep issues started with menopause and got worse with Wegener's.

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[TOBEY32]

Arlerta, do to an enlarged prostate, I'm up anyway a few times every night for a few years! It's just been the last month. Leaving library now. Till next time.

[TOBEY32]

The clinic I attend is issuing a sleep study for me. Almost hope it shows sleep apnea. At least it would be an answer.

[gilders]

The clinic I attend is issuing a sleep study for me. Almost hope it shows sleep apnea. At least it would be an answer.
Hi Tobey,
Make sure you have a "proper" sleep study. My first study just measured my O2 levels and pulse. The levels were stable all night, BUT this was because I had no sleep as it was on a regular noisy ward.
I returned for a full sleep study where I was wired up all over, especially my head, was in my own room and was constantly being watched via video. This test showed that I did have sleep apnoea.

I now have a cpap machine. I used to get up about 5 or 6 times a night to go pee. Now with cpap it's once or twice.
CPAP isn't 100% perfect though. I've had it for about 2 years now and I still find it uncomfortable and hard to get to sleep. Some people get used to it, but I know after 2 years I won't. You also wake with a very dry throat and I seem to get sore throats more often. I have a humidifier attachment which helps, but during colder months, condensation builds up in the tube and makes a loud rattling noise.

Let us know how you get on with the study.

[gilders]

Just in case you were wondering if cpap has given me more energy or made me feel less tired, I can't really say. I feel worse than when I started using CPAP, but my kidney function has dropped from around 18% to 11%, so it's understandable that I'm even more tired.

[Jaha]

Exhaustion is a big part of Wegs. There are nights that I can't go to sleep, even when taking my medication to sleep. My Doc always questions me about how I'm sleeping. I wish you all the best with your testing and hope you get some relief soon.

[greenjeep]

I have similar symptoms. if I don't get to bed by 10 most nights I enter into a zombie-like State. like I'm so tired my brain starts shutting down even while awake. mornings are the same, extremely difficult to get out of bed.
I struggled for years wondering if my symptoms were real or part of my new depressed State.
a couple of years ago I found out my testosterone levels were severely depressed. I take a shot for it now but I still struggle with fatigue. one of my Drs wants to increase the dosage to see if it helps, but there is a risk it will mess up my prostate even more. I was only about 45 or so when all this took place. they thought I was too young to be low on T. yet here I am.


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[TOBEY32]

gilders: the fatigue is indirectly related, right? the cpap's purpose being to give one better, more restful sleep.

[TOBEY32]

greenjeep: has the shot helped at all?? if another shot messes up your prostate more, how exactly does it mess things up? maybe a testosterone test is need for me. r u speaking of an enlarged prostate and do you take meds? which one if so?

[gilders]

gilders: the fatigue is indirectly related, right? the cpap's purpose being to give one better, more restful sleep.
Hi Tobey. The fatigue is related to drop in kidney function, not using CPAP. As you rightly state CPAP should give me more restful sleep, but no matter how much quality sleep I get, I'm still very tired all day due to kidneys.

[greenjeep]

greenjeep: has the shot helped at all?? if another shot messes up your prostate more, how exactly does it mess things up? maybe a testosterone test is need for me. r u speaking of an enlarged prostate and do you take meds? which one if so?sorry, checked out for a while. the shot brought my T levels back within range but if it has helped with the fatigue, it has only been slight.
it can cause swelling in prostate, and increased risk of prostate cancer. mine tends to be swollen anyway so... but I haven't noticed a change there.
I agree with others, major component of fatigue I've been told is kidney damage. but that Dr wanted to increase the T dose just to see if I responded.

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[greenjeep]

has there been any change in your fatigue? Mine is definitely worse right now. I think mine fluctuates with the weather sometimes. I also think stress causes me to become exhausted.
I've talked to all my doctors about it and they just not their heads. for me right now, that's my biggest issue. Not a very big deal in the grand scheme of things, but causes stress, I then worry about a flare or something, and on and on like an avalanche. I guess it's like a panic attack.

I'll be your huckleberry.

[drz]

I think for many of us Weggies fatigue is the norm. It may be just a major component of the illness but many of us have other factors that contribute or can cause fatigue by themselves. The meds we take can have fatigue as a side effect. Many of us have organ damage from the Wegs, and kidney damage and lung damage cause fatigue. I also have diabetes that causes as many or even more problems at times than the Wegs. And the stress of having to manage major chronic illnesses can cause fatigue. Fatigue is often a major indicator of a flare happening too.

Steroids like pred can offset feelings fatigue and cause an illusion of having lots of energy but when those effects wear off we often crash and then feel totally spent and need to rest up cause we have over done things.

[TOBEY32]

has there been any change in your fatigue? Mine is definitely worse right now. I think mine fluctuates with the weather sometimes. I also think stress causes me to become exhausted.
I've talked to all my doctors about it and they just not their heads. for me right now, that's my biggest issue. Not a very big deal in the grand scheme of things, but causes stress, I then worry about a flare or something, and on and on like an avalanche. I guess it's like a panic attack.

I'll be your huckleberry.

So sorry to just be getting back to you, GJ. My only other source to the Internet is the library - and then I get there and it seems there's so much I need to do. Some things I just don't enjoy doing on my phone at all.
It seems my fatigue has returned. It did for the most part leave, but has returned the last couple of weeks as strong as it was previously. My kidney doc didn't believe originally that it was my kidneys, as my creatnine hasn't changed. I again have wondered if it's low-T, but not having my own insurance it's hard to investigate like I'd like to. Going to ask doc if he will let me do some random blood work testing for things that might help narrow it down. I'd really like to know.

David

[greenjeep]

Ran across this the other day and thought of everyone on this forum. Check it out.
https://www.reuters.com/article/us-health-chronicfatigue/study-finds-chronic-fatigue-clues-in-overactive-immune-response-idUSKBN1OG00O