Looking For Information and Support

[PaigeyPaigeForLife]

I have been living with this disease since 1993, presently experiencing severe fatigue, is anyone else dealing with this? I also suffer with nausea and pain with is common with this disease. I take 2 Gabapentin 300mg 3 times a day, I also take Lisinopril 2.5mg 1 a day, I check my BP daily as well.

[PKDC-Admin Partner]

2 in 3 people with PKD experience pain, which can be hard to treat unfortunately. Have you spoken to your doctor about your nausea? It may be a side effect of medication.

[PaigeyPaigeForLife in reply to PKDC-Admin]

Yes, I take meds, it doesn't always help. Thanks

[bonneville]

I have the same thing, very tired from moment i get up, i also get the feel sick to stomach, and dizzy spells, i was told i have PKD when i was 20, im 53 now, last year when i seen my kidney specialist i told him all this, I got nothing for any symtom he said his hands were ied till my kidney function is down to 15 percent, im at 20 percent, guess there is really no pill they can give us since most are bad for kidneys

[PaigeyPaigeForLife]

Sorry to hear, this disease is terrible are you seeing a Nephrologist? My Nephrologist has really helped me, thanks to her i saw a pain management specialist, I had two cyst drained which lessen my pain. So maybe you need to get a second opinion and don't be afraid to ask questions.

[bonneville]

Yes I have a Nephrologist, see him yearly, next app is April so hoping for some answers

[PaigeyPaigeForLife in reply to bonneville]

Happy Friday! I hope you get answers. 🙏🏽💚