tiredness question

[Psim]

Hi! I've been reading but not posting for awhile (nothing ever changes with me!). But I have a question for my neph next week and I thought I'd ask here too, cause the collected knowledge and experience in this place is awesome.

I have kidney failure from primary hyperparathyroidism and for the past 4 years my GFR has been bouncing between 22 and 32. My iron/hemoglobin is just under normal. I'm also tired a lot of the time -- not the falling-asleep-on-your-feet and nausea that so many people have at around GFR 15 of so -- but a thick brain like I've been up all night. When it's bad, I can work for a couple of hours only and then it gets hard to move/think/talk. I can push through it and keep going for a little bit, but then I really hit the wall and it's over until I lie down for a few hours.

My exhaustion level changes over time (and doesn't reflect where my GFR is). Sometimes I'll be just a bit tired for a few weeks or months, and then the heavy tiredness hits for another few weeks/months. I just had a long good period, but now the tiredness is back with a vengeance (while my GFR is up to 30).

My question is: Does anyone else get similar fluctuating tiredness? Or does yours stay about the same or keep getting worse over time? Do you know what causes tiredness to shift like that? Is there anything that can be done to help? Is it for sure kidney failure that's causing this, or should I be looking at other possibilities? My mood is pretty good despite everything, so I don't think it's depression...

Thanks so much for being a place where we can bring our worries and confusion.    (too tired to dance)

[Willis]

About three months ago I went into a period of "tiredness" as you describe. I would get tired very quickly to the point of dizziness. All I wanted to do was sleep. (BTW, I'm on CCPD.)

In my case it was a combination of things. First of all, my doctor had prescribed a med to lower my blood pressure. That backfired like an old car! Without changing the prescription for my dialysis I went into a period of extremely low blood pressure. Several times in the evening before hooking up to the machine my BP was as low as 80/40. The lowest BP I recorded was 70/35. After about a week I stopped the BP med on my own and with the advice of my PD clinic nurse started using yellows only.

Now also, for some reason my calcium and phosphorus levels got very high and I started having severe itching. So then not only was I tired already from low BP, but I was waking up at least 5 or 6 times every night due to the itching and couldn't get back to sleep. From lack of sleep I turned into a zombie during the day.

I have recovered now and my BP is back under control at a reasonable level. The lesson to learn there is just because BP is a LITTLE too high, it can be worse if one over-treats the condition. As for the itching, my doctor had me stop taking calcium acetate as a binder and started using a non-calcium binder which she gave me from her free samples. That worked and by also watching my diet a bit closer my calcium/phosphorus levels are back within range. The non-calcium binder (sorry, can't remember the name at the moment) is very expensive. We asked and at our pharmacy even with Part D is was $700 for a 1 month supply! So I'm phasing that out by taking smaller amounts along with lower doses of calcium acetate. So I'll see next month how my calcium/phosphorus levels look.

At least for now I'm sleeping through the night and feel much more rested and have most of my normal energy back. I don't know if any of this may apply to your situation, but I hope it can give you some things to consider or ideas about interactions with your own meds and dialysis prescription that could be causing your problem.

 

[cassandra]

Glad to hear you are 'sorted' Willis, but dear Psim, I would think that your levels of exhaustion fluctuating could be caused by all sorts of things, aggravated by your kidneyproblems. Iron absorption is less, and therefore oxygen etc. Isn't it that your kidney does/affects at least 300 different things in your body. When I am in one of those bad periods, I give in, and 'schedule' some rest periods. My GFR is not really fluctuating without kidneys, and pretty stable D
You could maybe check your Vit D levels, and/or C.

Good luck

[Riverwhispering]

I was also thinking about your vitamin D level.  Mine is at 18 and normal is 32-100

If your Vitamin D is way below normal tiredness is one of the many symptoms.

"VITAMIN D AND CHRONIC FATIGUE

Chronic fatigue is one of the most common symptoms of low levels of vitamin D.

Most patients with vitamin D deficiency have chronic fatigue. In the beginning, people usually think that it is just a temporary problem and they expect it to go away on its own. However, fatigue caused by vitamin D deficiency will not just go away. In fact, it won’t go away until vitamin D levels become normal again."

[Deanne]

Which BP meds are you on? I was exhausted a while back. My neph asked if I wanted her to put me out on disability because it was somewhat like you describe. She changed my BP meds and I feel better now. Toprol was causing the tiredness for me.

[Psim]

Thanks so much for all the replies!!!! You all are the best. I'll ask my neph about vitamin D, and also see if there are other things we might track to see if anything (blood pressure, hemoglobin, whatever) tracks with my energy loops. I really appreciate Cassandra pointing out "your kidney does/affects at least 300 different things in your body". This disease is complicated and I'm doing my best.

Also it's inspiring to read all your stories and know that there are people who understand all I'm going through, and are going through 20 times worse themselves -- but still stay strong, rant, cry, laugh, persevere. The future is less scary knowing you all.

[Riverwhispering]

Psim I agree with you about the IHD family.  I love them

[MooseMom]

I experience that sort of tiredness, too.  My egfr at last look was 15, but I'm not anemic and my vit D levels are OK.  I know this sounds silly, but my tiredness is more like a profound sleepiness that is definitely worse when there is a day like today that is cold and gloomy.  All I've really wanted to do all day is sleep.  I just awoke from a two hour nap, and I could sleep more.  Zzzzzzz

[kristina]

Hello, Psim, I am also pre-dialysis, my "two little fighters" only function 10 - 12 %.

It was my choice to take these supplements because I feel they may help me in a small way
and I can say they are not harmful to me,
but I only take them as a child's-dose or a very small amount :

I take three times a week a spoonful of "Vitabiotics Feroglobin B12" Liquid Iron and Zinc,
Minerals and Vitamin B complex, Haemoglobin & Red Blood Cells,
 
and every day I take 2 "HalibOrange Kids Omega-3" with Vitamin A, C, D & E

and 1 "Vitabiotics WellKid" with comprehensive Vitamins, Iron, minerals plus Omega-3 for active children between 4-12.

Because of my sensitivity, allergies and drug-intolerance my body only can tolerate Kids-dosages.
 
I buy all these supplements at the Chemist, there is no prescription
and I feel these supplements assist my pre-dialysis-body in a very gentle way.

I have noticed, that in my current situation with ESRF pre-dialysis it is best for me
to keep strictly to my pre-dialysis-diet without any "artistic licence".
This is extremely difficult sometimes, but if I weaken and have something else
I immediately feel it is not right and it was not worth it.

Unfortunately for me there is no "artistic licence" allowed in my ESRF pre-dialysis-diet
and the reward is that it keeps me pre-dialysis for the time being,
which in itself can cause extremely sad moments and despair...

Good luck from Kristina.

[conchman]

Psim,

Like you, I am pre-pre "D".  At last tune-up I was 30% gfr.  I felt okay, just a little run down at times.  This week big change.  I left work a little early (very unusual for me) went home, climbed into my jammies and was asleep for an hour or so.  Just felt like I hit the proverbial "brick wall".     Last couple of days were a little better, back to just feeling run-down.  Mostly I chalk it up to the changes and just try and go with the flow.  I have known about the PKD since my 20's, but I am new to some of these changes, so I really don't know what to make a big deal of, and what not to.

[MomoMcSleepy]

Hi! I've been reading but not posting for awhile (nothing ever changes with me!). But I have a question for my neph next week and I thought I'd ask here too, cause the collected knowledge and experience in this place is awesome.

I have kidney failure from primary hyperparathyroidism and for the past 4 years my GFR has been bouncing between 22 and 32. My iron/hemoglobin is just under normal. I'm also tired a lot of the time -- not the falling-asleep-on-your-feet and nausea that so many people have at around GFR 15 of so -- but a thick brain like I've been up all night. When it's bad, I can work for a couple of hours only and then it gets hard to move/think/talk. I can push through it and keep going for a little bit, but then I really hit the wall and it's over until I lie down for a few hours.


I feel most tired at two times:
1. When I have an infection (I get IT's all the time, like,  monthly) or
2.when I don't take my ADHD meds.  I am on a stimulant for ADHD and wonder if that has something to do with me not feeling like complete crap all of the time. 
3. When my blood sugar is low...I am not diabetic, just a kidney thing
My exhaustion level changes over time (and doesn't reflect where my GFR is). Sometimes I'll be just a bit tired for a few weeks or months, and then the heavy tiredness hits for another few weeks/months. I just had a long good period, but now the tiredness is back with a vengeance (while my GFR is up to 30).

My question is: Does anyone else get similar fluctuating tiredness? Or does yours stay about the same or keep getting worse over time? Do you know what causes tiredness to shift like that? Is there anything that can be done to help? Is it for sure kidney failure that's causing this, or should I be looking at other possibilities? My mood is pretty good despite everything, so I don't think it's depression...

Thanks so much for being a place where we can bring our worries and confusion.    (too tired to dance)

[MooseMom]

I experience that sort of tiredness, too.  My egfr at last look was 15, but I'm not anemic and my vit D levels are OK.  I know this sounds silly, but my tiredness is more like a profound sleepiness that is definitely worse when there is a day like today that is cold and gloomy.  All I've really wanted to do all day is sleep.  I just awoke from a two hour nap, and I could sleep more.  Zzzzzzz

In answer to your question, MomoMcS, I'll refer back to my post quoted above.  What I didn't come back onto IHD to say was that this profound tiredness I described ended up being the initial symptoms of a cold unlike I had ever experienced.  I never got the usual symptoms of a runny nose or nasal congestion, rather, I was just very very tired and had a lot of phlegm in my upper chest.  I sussed it out only because my husband came down with the same symptoms, and then just about everyone around here got it, too.  Even the checkout ladies in my local grocery store were talking about having these same symptoms.  So what I had initially assumed was the effect of CKD ended up to be cold symptoms.

Those who know me and have read my gut-spilling posts over the years know that I am not inherently a sunny person when it comes to CKD.  I've thrashed about for so long.  I have been a massive wet weekend for years.  But in the past month, despite my numbers getting worse, I have felt generally better than I have in a long time.  I guess my soul just got tired of all of the anxiety, and I have finally reached the point where I bore myself silly and want to do and think about other things.  Now that spring is here, I have my garden to attend to.  The winter was mild and spring is early by Chicago standards, so I am taking advantage of that and am concentrating on having fun.  I don't obsess as much as I used to, and my mind thanks me for it.  I think my body does, too.

My egfr is crap, but I just spent several days with a friend of mine who came all the way from Norway just to see me, and we had so much fun together.  I had masses of energy despite my stupid ass kidneys; when I am happy, I feel so much better physically.

I am loathe to admit that keeping my mind and body occupied with fun stuff gives me more energy, but at least in my case, I have found that to be true.  Sometimes your mind can play tricks on you, and in this particular instance, that may be advantageous.

(and my egfr is 14, so I'm officially CKD5.  There is no physical reason why I should feel as good as I do, but I think I'm doing pretty damn well considering!)

This has been a very long answer which, to summarize, is that in my case, my tiredness is more pronounced if I have some sort of infection (and my neph has told me that this is normal and that if you are prone to UTIs, fatigue will almost certainly be a problem) or if I am emotionally anxious.  I find that doing anything to keep my mind off of kidneys helps in this regard, and regular exercise is, for me, a godsend.

[wvgirl]

This makes no sense at all to me. I have been feeling better the last few weeks than I have in a year. My house is cleaner and my dogs are brushed.  My blood test now shows I dropped from gfr of 9 down to 7!! I was thinking today that maybe it is like the animal nesting instinct. Dialysis nearer than ever and my house is clean and I am ready.

[cassandra]

mmmm.... I'm afraid I've never had that. wvgirl, sounds like one big silver lining with your cloud





             

[MomoMcSleepy]

ugh, I meant to reply to prism and only my quote showed up.  Durp.

ok, so But. D is a big one, good suggestion.  I just finished a six-week course of Vit  D and mine is at 90, into am still tired too.

found I'm tired because of (potentially):
infection (I get monthly UTIs)
low blood sugar (not diabetic, but your kidneys help control blood sugar, I'm told)
I've run out of ADD meds. I take stimulants for me ADD, and I  think that they mask my fatigue from CKD.

my gfr is about 15-16.  I am finishing a 3-week run of cipro.  I feel super sleepy like I could lay down anywhere, amid sort of "pass out" on the couch at night after dinner, which drives my husband crazy cause I miss meds and don't wake up until the middle of the night.. Oh, and I've found that probiotics make me
feel lots better in general, because I am almost always taking an antibiotic, and it messes ul my stomach.  That could make your tired, esp. If you get diarrhea, cause then you might get dehydrated easily, you have to watch out for that.

I also just started taking Sodium Bicarbonate for metabolic acidosis, which was giving me palpitations and breathing problems, and some achiness.  Maybe that makes you tired, too? 

I keep thinking I'm anemic, but never am!  You might be, though, or might be in the future if not now,so don't assume it's something else.

[Deanne]

I've been finding it harder and harder to go up stairs. I haven't been very anemic yet. I need to take iron, but don't need epo anyway. I keep getting tempted to start taking the elevator at work, but I suck it up and endure the stairs several times/day. It's only two flights, but they're office builiding flights, so each flight is about the equivalent of two flights of stairs in a house. I just ran labs again next week and will find out in a week or two how they came out.