newbie fatigue question

[Psim]

I'm not sure if this is the right place for this questions, but... I'm not on dialysis yet (22% function), but for the last three months I've felt like I'm wandering through a fog that never lifts.  I'm so tired --  not tired like I spent the day digging ditches, but tired like I've been up all night (though I'm sleeping relatively ok). I can't focus, I do things wrong all the time, my memory is shot. It gets worse if I do very much, but also if I'm in a situation with alot going on, like a party with lots of people talking. My neph said fatigue is unusual but not unheard of at my GFR. She asked if it might be depression, but I'm actually pretty cheery most of the time (yes, I know, that's sick! ). My hemoglobin is fine so it's not anemia.

Has anyone else had this kind of fog-brain symptom at a level of kidney function like mine? Just knowing I'm not alone (and being reassured that it *is* my kidney and not some other new bad thing!) would help so much. Also any strategies for coping. I know so many of you are going through alot more than I am right now, and I so appreciate that you are here!

[okarol]

  I am sorry you're feeling bad.

Uremia:
"The presence of urinary components in the circulating blood and the resultant symptoms. Symptoms can include weakness, headache, confusion, even at low levels."

When your kidneys aren't fully filtering your blood you are bound to feel as you do, although everyone is different. Don't ignore these symptoms and be sure your doctor is aware of how you are feeling.

Depression can also be a symptom. Going through ESRD is stressful, as is any chronic illness. It can sneak up on you and affect your disposition.

How often are you getting labs done?

[Romona]

Fatigue is definitely related to kidney insufficiency. One of my nephrologists was an an Air Force doctor. He said that he had many people come to see him because they were "a little tired". He said it was very hard to tell people that they would need dialysis or transplant in the future. I think that people often ignore symptoms such as fatigue. We all have busy hectic lives. Even though you have 22% function, confusion is a sign that the waste products might not be removed by your kidneys. I also had those symptoms. I was very fortunate that I got a transplant when I did. I was scheduled about 2 months later to get ready for dialysis. 

[paris]

Yes, at 22% you will feel fatigue and confusion. I know the doctors often will say you won't, but, my story is similar to yours--age, etc. Went from 30 to 20 in a year and now around 12 for almost 2 years. Been trying for a living donor transplant, also on list for 2 years.  You described if perfectly--like walking in a fog. I have lots of confusion and memory loss and like you, especially when there is lots going on around me.  As my numbers went down, vomiting and not being able to sleep were added to the list of symptoms.    That is why this board is so good to come to. We can relate to what you are going through even better than the specialists. I am fortunate to have a neph that trusts my judgement and opinions.  Keep asking questions!    And yes, depression can be a part of it.  Are you kidding? You have been told you have ESRD!!  But, you can get through this--remember we are walking right beside you, step by step!

[stauffenberg]

For me the perpetual exhaustion never left me, whether I was in renal failure just before starting dialysis or at any time during my more than eight years of dialysis.  Curiously, my sense of being in a mental fog and being unable to concentrate only started to emerge at the very end of my time on dialysis, five or six months before my transplant.

Many patients are started on EPO to diminish the symptoms of exhaustion even before they begin dialysis, and it sounds as though you are a good candidate for it.  Ask your nephrologist if he will give you some, perhaps in the form of Aranesp, which can be taken in weekly injections.

[goofynina]

You are describing how i have been feeling these past couple of days but i think i know why i have been feeling like that, i started taking a cough syrup that has codeine in it and i feel like all i do is walk around in a daze, i get dizzy easily and only feel good if i am sitting or laying down,  i have stopped taking it as of last night to see if it goes away and so far, it isnt as bad, but it is still there   
Have you started or stopped any new meds? 

[Psim]

Thank you so much for all your replies. It's such a relief to feel less alone in the fog (though I wouldn't wish CKD on anyone else just to keep me company!). Knowing that it is for sure my kidney takes away a big undercurrent of anxiety. Knowing that so many others experience similar things makes me feel like, ok, I can accept this and get on with it. This is not the adventure I would have chosen for myself, but it’s the adventure I’m on now, and at least the company is good.

To answer some questions: Okarol asked about my labs -- I’m getting them done every two months – is that often enough? Staffenberg suggested EPO – is that for anemia? Might that help even though my hemoglobin is normal? Goofy Nina –I haven’t started any new meds. I hope your cough goes away soon, and the foggy feeling with it – you have enough to deal with!

Thanks again to everyone. This board is a life saver.

[KR Cincy]

I get a full lab run every month...lots can change in a 2 month time period so you may want to see about getting your labs more often.
Epo helps the body make red blood cells...you may need iron for anemia...your lab numbers will tell you that. Don't waste your time with over the counter iron pills...they don't do too much good...you can get injections of beautiful, thick, rich, black iron...just make sure they inject it slowly and be prepared for a bit of constipation.

[okarol]

I agree with KR. We had Jenna's labs every 2 months and it was during the end of the last 2 months when she went from 6 to 10 creatinine, and she was really sick.

Iron won't do any good if your kidneys aren't making Erythropoietin (EPO), the hormone that prevents anemia (low blood count) by helping you make red blood cells. EPO is usually needed only by those patients whose hematocrit is less than 30 percent. Some patients may be started on EPO before their hematocrit falls below 29 or 30 percent. In this case, EPO will prevent the feeling of fatigue and low energy levels caused by anemia. In order for EPO to be effective, the body must have enough iron. Many dialysis patients need to take iron supplements once EPO therapy is started.

[paris]

If your hemoglobin is in the good range, ask them what your iron stores are.  My hemo can be ok, but then I need iron infusions for the red blood cells to "feed"on.  Remember the Gerital commercials for iron poor blood?  Anemia can stem from not making red blood cells and from not having enough iron in your system.   Just my 

[MattyBoy100]

You will still feel tired even with EPO.  You may find the very nature of kidney failure leaves you feeling tired or more tired than a normal person would feel.  You have to learn how to cope and there will be days when you don't want to talk to people and just be left alone.  Don't worry about feeling like that, it is perfectly normal for people with kidney failure and you will probably find after a good sleep (day or night) you feel much better and ready to take on the world again!

[paris]

MattyBoy, you explained the fatigue perfectly.  Also, the interaction with people. I just sent an email to family and friends explaining that I may seem anti-social at times, but I am not upset with anyone, just need to be in my own "time out".  It lasts a few days and then I go on. At first, I worried, now I work through it.  You post should be given to every renal patient so they understand from the beginning that this is "normal" and all part of the process.

[Psim]

You have to learn how to cope and there will be days when you don't want to talk to people and just be left alone.

You're sure right about that. I'm amazed at how tired I get just from hanging with my friends. If I go on a walk by myself it's tiring, but if someone comes with me, it's double hard. It's confusing, but hearing that other people experience similar things helps somehow.

So how *do* people cope? I'm sure there's a thread on that already -- can someone point me to it? Do people actually work with this fogged in feeling? I've had to give up all my more interesting, challenging jobs, and just do the boring things where it doesn't matter if I can think or not. It's incredibly frustrating.

[okarol]

Awww sorry it's been so tough for you.
Jenna never did cope, she was bone-tired all the time. I guess she adapted and minimized activity. Sleep was her only friend, but then she had wacky sleep patterns to deal with.
Hope things improve. 

[Psim]

Thanks Okarol. I guess I don't really feel like things have been that tough... Mostly I feel like, well, I've had a great life and if this is what's happening now, I'll deal. Other days, I sure do like that head banging smiley though!

[Deanne]

You aren't alone Psim! I have about 25% function and I can't imagine being energetic. I'm in bed most nights by 9:30 and don't get up until close to 6. I just moved into a new house and I want to get everything organized, but I have a hard time getting off the couch in the evening. I have a sit-down job and it's often hard to stay focused. I don't know if it's because my job is starting to bore me or if this is just how it is now. When I get home from work, I'm often disgusted at myself for having wasted time on the internet instead of being productive. I have a lot of opportunities at work to do interesting, fun(?) things, but I can't seem to makey myself take advantage of them.

I am a little bit anemic and my neph told me to start taking iron tablets. I started out at two/day and she said my iron level is better and suggested I try to take three a day. Now if I could just remember to take that third tablet! I think it has helped a bit though. Even though you said your hemoglobin is still ok, maybe you could talk to your neph about beefing it up anyway?

[Sunny]

I know exactly what your feeling regarding the exhaustion issues. My creatinine has been pretty stable at 2.8 which I'm very happy about, but I still feel very exhausted all the time. My renal doctor explains it to me by saying my body functions at about 1/3 capacity of a normal persons.This is often how I explain it to others so they will understand why I can't do as many things as they in social settings ( if they ever bother to ask). I have lived with this condition for 7 yrs but noticed excessive exhaustion two separate times and each time my renal doctor thought it might be my high blood pressure medicine contributing to my problems. Thus I have tried a few different HBP meds to counteract it.What I learned from my first HBP med is that Propronalal in high doses causes depression, lethargy, and memory loss. My second HBP med, Catapres TTS, acts on the central nervous system and in turn can also cause depression and lethargy. Right now I am working on trying a third HBP med to ease symtoms described. You learn to live with the tired feeling regarding kidney disease, but just thought you should know some medicines can contribute to the problem. Hope things are goind well.