PKD - Feeling unwell

[Sportbilly]

Hello everybody. I am a 43 year old male with PKD. My last appointment with my specialist was 8 months ago and he said everything was good (bloods, tests etc) and no repeat appointment needed for 1 year.

However, despite me almost never having any pain I constantly feel tired, dizzy and just generally "unwell".

I eat well, do not smoke or drink alcohol, and exercise everyday. I should feel good which is why I am worried.

I have been to a normal GP who always tells me that all the tests (blood, stool, BP, urine) are fine and that I am healthy but I know when I am not feeling well.

Has anybody else had this feeling with PKD as currently not sure if it is PKD related or something completely different !

[Jane1061]

Hi,

Feeling the same! I am extremely tired and have been itching, had a rash on arms and was given steroid cream with an antibiotic combined, no water test ect. I'm waiting to hear from my consultant as my BP was very high so had to wear a monitor, this was 3 weeks ago! My tests were ok I presume as I heard nothing I'm like you in the fact I am unsure if kidney related or not.

I do find there is little support or understanding from GP's in relation to this disease (mine anyway).

Hope you're doing ok now.

[GP1964]

55 year old male here; know what you mean. Mine usually hits about 3 in the afternoon. It can help to make sure you drink plenty of water.

[bonneville in reply to GP1964]

Yes, thought it was in my head, im 53 and seems between 2 and 3 im dead tired, and unwell, now my pancreas is really acting up, they found cysts in there as well, lol they seriously thought i was an alcoholic, I don't even drink haha, apparently those are the same symptoms an alcoholic has, at least to fix theres all they have to do is quit drinking, We have to suck it up and live with the pain, only us PKD know the pain, I also get dizzy spells and went to emerg few times, and they don't know what it is, so i was told cause tests were good, once they asked if i was on street drugs lmao cause they get these symptoms, no I dont take drugs, i stay away from pills except BP pills, I think more doctors should learn about this PKD seriously,

[GP1964 in reply to bonneville]

I know what you mean about more doctors need to know. Had to have heart by pass surgery 4 months ago and had to go through it all again and again (having said that I have to go to two different hospitals) In the high dependency ward they though I was constipated!! Luckily not had to worry about any dizziness at present.

[bonneville in reply to GP1964]

The dizzy is not bad for the last few months, lucky me, but last year was awful, no idea why, I checked bp when I had dizzy spell but wasn’t out of whack so I tested my sugar with my husbands blood tester and was a bit low so I popped candies and went away, I do not have sugar diabetic but was drinking my water to much so maybe that dropped the level idk

[Rick234]

Hello, I’m 42, and feel exactly as you described. I sleep all night, still In the morning I’m already tired. At 1pm I feel like I’m going to die, and when I can I take a nap.

That started around five years ago, and I feel very guilty for that, ans there’s no official explanation for that, as my results are always ok too.

For what I’ve read, it’s probably something that comes with the disease.

Best wishes

Ricardo