Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Fatigue

Hey there, lately I've been feeling pretty fatigued lately and I've been wondering if it can have anything to do with PKD. Often I'll feel quite tired even after sleeping. It causes me to just have to go to sleep in the middle of the afternoon or go to sleep early some days which is getting a bit irritating really. Anyone else here with PKD having this issue? I'm seeing my nephrologist pretty soon so I'm going to try to remember to ask him about this when I do. Also I'm going to ask about the joint pain that I keep getting as well.

Replies

lovemyfive
lovemyfive

Yes to both. I've often wondered the same thing...
Chewitt
Chewitt

PKD, like other kidney diseases, is said not to really cause symptoms like fatigue until kidney function drops to 15%. That leaves the question why so many of us suffer from fatigue. I think that dealing with pain, the weight of enlarged organs, anxiety, nocturia, perhaps anaemia and disturbed sleep because of these issues, are the factors contributing to our diminished energy levels. Again, joint pain is not expected until function falls to quite a low level, so there's no satisfactory explanation for that. We have to remember that having PKD does not mean we will have no other health issues, which may explain some of our other symptoms. However, PKD is not just a kidney disease, but is now regarded as a ciliopathy and connective tissue disorder so I wonder how many other symptoms will come to be regarded as part of this disease in the years to come.
enigmaticloner
enigmaticloner

I saw my nephrologist earlier and asked him about some of the pains I've been getting and he said that it's probably not related to PKD at all because my kidney function is fine still. This leaves me wondering what the issue is really then.
Wrigs
Wrigs

I don't really get fatigue but do suffer a little with the sleep side of things which makes me tired at times.
nicky73
nicky73

Yes, here the same. Since 5 years I work out 3 hours a week on a crosstrainer and I was in good health but lately I noticeI am more fatigued, I don't have anemia. I think it's because my kidney function deteriorates. My bigges problem is my liver, it's 6 times as big as a normal liver. In a few months I will be on the waitinglist for a combined liver and kidney transplant. Very nervous about that. Especially because I have a young son. Just found out he has hypertension as well and visited a nephrologist with him a few weeks ago. I do suffer a lot of pain, especially my ribs.
kagancher
kagancher

Over the last few months I went from having enough energy to do everything I needed to, to struggling to get out of bed and make it to work. I'm wondering if anyone has found a supplement or other idea to alleviate this crushing fatigue. I'm a single mom with a young child and am starting to feel a bit desperate
Chewitt
Chewitt

Is your kidney function declining kagancher? My energy levels have dropped alongside kidney function. Have you been checked for anaemia? This can also cause extreme fatigue if untreated. I was found to have a folate deficiency recently, and taking a strong supplement has helped a little.
enigmaticloner
enigmaticloner

When I got my blood taken recently the results show that my hematocrit (I didn't even know what that was until I had searched on Google) is a little low. After looking it up it showed that that is basically a sign of anemia. Also I was told there's traces of blood in my urine (which I'm told all the time when I get blood taken it seems) which I assume has something to do with my blood being a bit low. I don't know if it necessarily has anything to do with my fatigue or my pain though.
Chewitt
Chewitt

Anaemia (low haemoglobin count) can cause fatigue. Blood in the urine can be a sign of infection which can cause pain and fatigue.
enigmaticloner
enigmaticloner

The blood in the urine has been a few years now for me for some reason. What area would the pain be that you're referring to?
Chewitt
Chewitt

Probably flank pain i.e. either side of your mid-back - that's where I've had pain with infections, and also with cyst ruptures. It can be horrible.
enigmaticloner
enigmaticloner

I see, my pain is pretty much in my knees, my back, and a lot of headaches and neck pain.
Chewitt
Chewitt

Hmm. Headaches and neck pain, even if severe, can be caused by tension. Some relaxation exercises or Mindfulness might help.
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