Fatigue

[lararva]

I'm curious to know how others deal/cope with their fatigue.  This is my third bout with kidney failure (I've been on dialysis twice and had two transplants). I'm still pre-dialysis, although I'm not sure how much longer I'll be pre since my creatinine just jumped to 5, dropping my gfr to 10. In my previous experiences though my decline was much quicker and I felt much worse. Other than the usual bone pain and itching, I feel ok other than this overwhelming fatigue. No nausea or weight loss. No edema. My hemoglobin stays fairly consistent at 9-10 and I take EPO when needed. I feel like I'm just not "sick" enough to be this exhausted or to be so close to dialysis.  I was so miserablely ill during my previous experiences.  Until this week I managed to keep working but my job is fairly strenuous. I'm an RN in a Pediatric ICU. Even with my lab values right in front of me I feel like I can maintain at this level for a while. I'm curious to know about other peoples experience with fatigue and working while sick and/or anything that was helpful in increasing their energy. I already do the more obvious things- healthy vegetarian diet, healthy weight, EPO, etc.

[MuddyGurl]

HI, I'm a newbie here too. I haven't been as ill as you,  no dialysis yet, and my creatinine just reentry  jumped and the eGFR nosedived. now I am in Stage 4 CKD.

I noticed some serious fatigue late last fall. I had no idea my eGFR was falling, and I was hauling huge bins of bark and doing a ton of yard work.

then I had major hip spasms. and after needing PT I just felt weaker. used to walk my dog daily with a brisk walk 40 minutes, no problem. and then I was so tired had to sit on a log and rest..this went on and into the new year.

I began a low carb diet, lost weight was feeling good but just too tired to do much of anything including keeping the house and yard up.

IS it like that for you?   I reentry went to a  vegetarian/with dairy diet, low in protein, and that helped. ( Glad to see it works if it has for you too!)

I was very itchy for a while in Feb. , and my feet  started burning and I freaked out I was diabetic. but actually I am certain I am deficient in Magnesium..and after using a spray oil transdermally, and now taking a supplement I DO FEEL better, and far less leg cramps AND more energy.

Magnesium is so critical, most women ~70% are deficient, and with your transplants you prolly can't just take OTC pills, so a spray oil may work, or foot baths to soak it thru the skin.

I'd like to keep chatting so I can learn more and am happy to share the research I'm doing to get my body as healthy to stall this kidney.

I have a 3rd renal panel next week..so I will now have 3 tests  over 3 months I hopeI have improved my last low number by all the changes I;ve made.

[tigtink]

For me, a hemoglobin level of 9-10 leads to overwhelming fatigue and weakness. I start really feeling it at about 10.5 and by the time it gets to 10 I am barely able to walk. My old nephrologist wanted to keep the level between 9 and 10, but my new doctor is using the EPO to keep it in the range of 11 to 12. It has made a major difference in the quality of my life. As long as we monitor it closely and do not use the EPO to raise it above 12, he thinks there is no additional risk for complications.

[KidneysR4Wimps]

I'm right about where you are, Creat hovering around 5, hemoglobin steady around 9-10, no edema, and really really tired. My labs show I'm 11% so my dr is prepping me for dialysis. But like you, I just don't feel sick enough. no nausea or vomiting, no change in appetite aside from a huge desire to put red pepper on everything so I can taste it. I don't even have any itching or bone pain like you mentioned. Part of me is wondering if I need a second opinion even though I trust my Neph completely. She does stress that we keep the feelings in consideration when treating, instead of just looking at numbers.

[MuddyGurl]

HI Kidney4w…Glad to see you posting here.  I just read your intro…wow..you are a resilient woman…but I bet you have an a+personality all your life with lots of enthusiasm and zest for life?   ..and THAT is the secret.

Just when you think..shessh, how much more is going to pop up and smack me..you get a break.  Others with more experience here will answer soon, I hope, many have had a prep for dialysis then not needed it to start for a while longer…so YOU being a position of control to decide WHAT happens not just being told when it will happen may be critical for positive transition.

I have zero idea until I talk to the Neph way later in June if I have to plan now..but getting all the  info I can and learning from others  on the same bridge and crossing it are my responsibility if I want any 'control' or semblance I have control.

As for fatigue I have the choice to sleep/nap anytime as long as I want..mostly I aim for 4-5 for an hour..then get 5 more house of basic energy before a 12-1 am bedtime..of if I sleep at 8-9pm I may  just change to jambes, and back to bed to read, or get up and to bed >1am…..but I dont have a schedule to keep like you.

Your PD choice sounds exactly what I might want, although  I still dont know enough  yet, nocturnal D if it is done at home seems ideal. but I guess it is all in a clinic setting..getting up to go home at 4am to me would be  a challenge to my keeping a smile on my face...

[KidneysR4Wimps]

Hi Muddy, thanks for the welcome!

Yes my life is a bit crazy although I just finished the semester and I'm taking the summer off so I can figure this whole dialysis stuff out. After seeing the surgeon this week, I called my neph to make sure this is what she wanted me to do because like I said, aside from being tired, I just don't feel that sick. She said she just wants me to get the cath "burried" so that when my function hits 10% it'll be ready to go and they'll just have to cut it out from under my skin. So essentially, 2 procedures. I really don't want to have 2 procedures, so I'm going to have another discussion with her about this next week.

This week has been my off week since school for me is out and the kids are still in school. So my husband has been taking them to and from while I sleep the day away. I could really get used to this! lol Your schedule sounds like exactly what I need!

You can do PD at home while you sleep. That's what I'm planning to do. You hook up for 9-10 hours at night and the cycler does everything for you. The challenge for me will be making myself sit down at night to do it. Going to bed for me usually includes so much other stuff like getting the kids clothes ready for the next day so by the time I actually get IN the bed I only have about 6 or 7 hours left to sleep. lol

[MuddyGurl]

That does sound ideal for someone like me..to sleep and have PD at home.  I had my Neph appt switched once to June 18, and may be switched to a Televideo appt to save me a 7 hour  bus trip and overnight stay in SF    …so I am gathering my questions for the Neph.

( I admit I sit on my arse during the day and am in front of the Mac for hours, so dialysis at home during the day might be a better choice than at a center..period.)

and My eGFR went up to 29,  and I am feeling better,  less fatigue over last 2 weeks..an I have an idea why.

I mentioned I am creating a lower protein, amino acid supplemented diet,??    All vegetarian, yet STILL Low Carb and High Fat..so I get butter, full fat dairy, coconut oil.  and I discovered Hemp Seed protein which is PERFECT for me..high in Magnesium which I was deficit in ( most women are low low)

Magnesium is the 4th needed mineral after iron, we MUST have it, used to get it in foods like spinach,almonds, pumpkin seeds, and dark green veggie.BUT factory farms ruined that, so buying from a local farmer who rotates and amends the soil is best.  another reason to go organic.

OK..Hulled hemp seeds are imported raw from Canada, organic, taste like walnut meat, and easy to add to ANYTING..from steamed veggies to salads, smoothies, toast, eat by hand, and add to cream cheese to make "cookie dough balls"  a great snack!!  They are EXACTLY providing same essential amino acids like MEAT..but don't strain the kidney with oxidative waste as does all meat for CKD patients.

For dialysis patients who NEED more protein and balanced over the day it may be an ideal food too, and save you from eating added egg whites!

When I learned I could get all my RDA of Magnesium in JUST 6 tbl of hemp seeds, and 20+ gr of pure, complete protein I was thrilled. and it costs less than quality grass fed meat too. Locally butcherd meat, a Tbone steak is $17.00 a pound..yikes.   A  2 lb bag of hemp seed is under $12.00 [look up "Just Hemp" brand  on Amazon]

After 3 weeks of the NEW veggie diet with hemp seed, eggs, and all the rest with added magnesium oil transdermal  ( skin massage) I am getting Mg safely ( CKD can't just take OTC Mg Pills..a lot is wasted via the gut, and not absorbed)  the FAILSAFE for  'too much' of any MG oil, food, pills is a laxative effect..meaning it relieves  constapation, which can be a good thing. If you take pain meds you ARE constipated, and if water is rationed then Mg helps relax the bowels for easier going.  see how critical it is???

So for ME..my structured diet includes Mg as my food, and added supplements , and the ENERGY, and LACK of leg cramps has been a blessing. I used to collapse at 5-7pm and need a nap..now, I am hesitant to admit I am feeling better all day, and some days I can skip a nap and not oversleep the next day…so Its a WIN WIN all around.

Forgive the EXTRA CHATTY  POST, but I am so pleased with  finding SOME solutions to my sickly kidney that I had to share!  Dr. Fung, Canadian Nephrologist  told me that getting Mg via food is ideal, and he uses Epson Salt baths and Milk of magnesia  for his kidney patents too.

[kristina]

I'm curious to know how others deal/cope with their fatigue.  This is my third bout with kidney failure (I've been on dialysis twice and had two transplants). I'm still pre-dialysis, although I'm not sure how much longer I'll be pre since my creatinine just jumped to 5, dropping my gfr to 10. In my previous experiences though my decline was much quicker and I felt much worse. Other than the usual bone pain and itching, I feel ok other than this overwhelming fatigue. No nausea or weight loss. No edema. My hemoglobin stays fairly consistent at 9-10 and I take EPO when needed. I feel like I'm just not "sick" enough to be this exhausted or to be so close to dialysis.  I was so miserablely ill during my previous experiences.  Until this week I managed to keep working but my job is fairly strenuous. I'm an RN in a Pediatric ICU. Even with my lab values right in front of me I feel like I can maintain at this level for a while. I'm curious to know about other peoples experience with fatigue and working while sick and/or anything that was helpful in increasing their energy. I already do the more obvious things- healthy vegetarian diet, healthy weight, EPO, etc.

Hello lararva,
Fatique seems to be one of the "curses" of kidney-disease... Ever since my kidneys first failed in 1971
and their eventual continuation to function a little until December 2014, I have regularly struggled with this terrible fatique
and to my knowledge there is nothing that can be done about it...
In my case, whenever this fatique "hits" me again, I "park myself" on the sofa and either read a book or watch a "silly" film on youtube...
With "silly" film I mean a very lightheated film, which does not challenge my "grey cells" too much at the time,
because on these fatique-occassions it is not only my body that feels terribly fatiqued ...
... Many years ago I stopped to get upset about these fatique-occassions, because there is nothing that can be done about it anyway
and because of that I feel that I just have to "sit it out" until I feel a little better and more energetic again...
Fortunately in my case this "complete fatique" (as I call it) usually "only" takes one or two days and then I feel a little better again...
I send you my sympathetic good wishes and all the best,
Kristina.

[Charlie B53]

Other than labs, how can you tell that your body is low in Mg?

Itching and tiredness seem to go hand in hand with CKD, so where is the line when Mag gets low?

I have to admit that my diet is seriously lacking.  I eat what I 'feel' like.  No planning.  I browse through the refrig, cupboard, store, until I find something that appeals to me at that time.

Usually my labs are fine.  I don't pay enough attention to the actual numbers, my Dietician and PD Nurse are quick to tell me if anything isn't up to my normal, even if it is still within the acceptablel range but maybe nearing the low side of that range, they tell me and suggest foods that can improve it.

I'm just tired and itchy all the time.  Otherwise I don't think of myself as 'sick' at all.

[MuddyGurl]

HI CHARLIE

 - I wrote a big post and it froze up..sigh.

will reply directly to you.. are you CKD or in dialysis??

I will send you specific Mg info on testing, as normal labs the doc orders are not the right one to tell.

[KidneysR4Wimps]

Please be very careful with magnesium. I had gastric bypass surgery and so my stomach doesn't absorb like everyone else's so I have to take vitamins daily. I worked closely with my neph on this because the kidneys don't process all vitamins the same, especially when they're damaged. Magnesium is the main one that she said I don't need the extra boost from because it's so hard on the kidneys. As a result, she said even  a regular otc multivitamin has too much mg for the kidneys. Please check with your Dr before changing your diet.

Muddy I'm glad to hear you're feeling better and found a way to get through this! I'm going to talk to my Dr about the hemp since protein is definitely something I'm in need of and I'm not a big fan of beef or pork.