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I Am Having Kidney Stone Challenges. I Seem To Make Them Quickly And The Kidney Doctor Is Not Sure Why. Does Anyone Else Have This?

A MyFibroTeam Member asked a question 💭
Le Roy, NY
September 13, 2015
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Answer Summary

Members connected over the painful and often mysterious experience of recurrent kidney stones, with many sharing stories of multiple episodes,... Read more

Members connected over the painful and often mysterious experience of recurrent kidney stones, with many sharing stories of multiple episodes, emergency room visits, surgeries, and the frustration of doctors not always having clear answers about why stones keep forming. Several members offered practical strategies that have worked for them, including drinking at least two liters of water daily, taking prescription potassium citrate to prevent recurrence, having stones tested to determine their type (such as calcium or uric acid), and avoiding high-oxalate foods like dark leafy greens, nuts, and certain vegetables. A recurring theme was the importance of ruling out underlying conditions like medullary sponge kidney or parathyroid issues, staying persistent with medical teams, and finding solidarity in a shared struggle that can feel isolating and overwhelming.

A MyFibroTeam Member

Sounds like you folks may have medullary sponge kidneys which is a disease which affect the renal tubuals. They remain dialated so paticulates like calcium and oxylates are moe likely to forma sludge and stones, so diuretics and allopuinol are ordered to increase flow. It is a good idea to increase fluids to to liters daily and adding lemon to your water is recommended. If your stones pass you may find that you may get urinary tract infections too. It is also a good idea to rule out trouble with your parathyroid causing increased urinary calcium levels. It is not ususally expected that people will decrease dietary calcium, but supplementation is not a good idea. There are foods high in oxylates that may me avoided too which may be googled. Not all docs are familiar with these things. My kids are also stone formers and had their first episodes in middle school. When You are a woman and you have a kidney stone stuck at that junction right between your bladder and your ureter you may not know whether it is your appendix, an ecctopic, an ovarian cyst, or a stone, with boys you have a smaller differential diagosis list especially if you know that this can run in your family.

September 15, 2015
A MyFibroTeam Member

You can have the stones tested to find out what kind they are. I have 2 different types. Calcium (most cimmon) and uric acid. I'm taking a pill to keep my uric acid down.

September 14, 2015
A MyFibroTeam Member

You poor thing! I recently suffered through my first ever episode of kidney stone, wound up in ER, was told stone to big to pass, had lithotripsy, spent the last two and a half weeks passing stone fragments and in intense pain. I can't imagine going through this more than once.

September 13, 2015
A MyFibroTeam Member

All those dark leafy green kale, spinach, beets, almost all vegetables, all nuts and peanuts, legumes and beans, no wheat, soy, or shellfish. Limited white bread, white rice, no potatoes. Whole fats, no margarines. I am also dealing with type 2 diabetes at the same time and with several orthopedic injuries that didn't heal right makes life interest-ing. Luckily the VA has provided me with a 💺 and the lift to haul it around.

December 10, 2023
A MyFibroTeam Member

Yes ma’am. Constantly have kidney stones since 1998. Many surgeries and also had a massive stag horn that engulfed my kidney, chronic pylenephritis and continued hell. Doctor doesn’t know why I’m always having stones. One more issue to deal with. You’re not alone xo

February 28, 2022

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