So tired of constant stones

[Howmuchlongerwillthislast]

I’ve had kidney stones for years, I can go months without and then get lots for months at a time. I have lots at the moment and just feel so exhausted all the time and like I’m just trying to get through each day and not living life. I want to have energy and not be in pain.
I went to a specialist years ago but he only recommended to take more magnesium, which I’m slightly low in…I take supplements each day, these stones always return though.

I've not had stones but have had chronic recurrent UTIs and know how debilitating they are, so can certainly sympathise on how much worse stones must be.

Have you seen a specialist more recently? If not I'd ask to be referred to one, as the condition you have is affecting your day to day life. Try and find a specialist in this field that has a good track record and you feel would help you and ask about how to be referred.

I've never had kidney stones but I've had salivary gland stones. Tiny little buggers that block the salivary glands and so your face swells up on one side everytime you eat. It is incredibly painful. They generally pass on their own but I had one that lasted for weeks and ended up at the hospital as it got infected. I try to drink lots of water now which seems to help. I sympathise with you. Wish I could help more.

Have they checked your parathyroid levels ? They can be linked to repetitive kidney stones due to elevated calcium

@mrsbyers Im not sure if they checked that specifically, although I had lots of tests and all ok aside from slightly low magnesium

@fridaytwattery Yes, I think I definitely need to go back, I’m having a bad attack of them every couple of weeks at the moment, I have to miss some work days and so many social events for my Dd, it’s so awful

Drink orange juice when you get one, it makes you automatically suck slightly due to the acidity and help draw them out. This was my mums GP’s advice.

Thanks for that. I also have to suck on fizzy sweets because they make you produce more saliva. Then I have to sit there and massage my face. All good fun.😵‍💫

I take it you are drinking alot? I've had then 3 or 4 times and doctor said I need to drink 3 litres of water a day, which in the winter in hard. But kidney stones are the most horrendous pain so I try my best.

Have you heard of a herb called chanca piedra? Aka stone breaker. You can get it as a tea, a tincture or in capsules. You can find it on Amazon and read the reviews.

@comeondover Thank you, I literally just received some yesterday after ordering on Amazon, took one last night and wee’d lots (sorry tmi) Had another this morning and I can feel all the stones low down, so I’m hoping they’re working and pushing them out 🤷🏻‍♀️So bloody painful, then I start get nausea/vomit and then fall asleep, it’s a horrendous cycle. Just praying these work

@Chocchip11 I try my very best at this, literally have to force myself to drink extra, but I’m also thirsty a lot 🤷🏻‍♀️I’m trying to drink as much as possible. Can’t carry on like this anymore, it’s really affecting my life now

Haven't you been offered any treatment? When I had mine I had lithotripsy, it was very painful, but not as bad as a kidney stone attack, & it did break most of them down. I did have to have one large stubborn one removed surgically. At the beginning they gave me a drug they give to men with prostrate problems, it opened up the urethra a bit to help the stone pass through.

@HelpIcantfindaname Never, I always manage to flush them out myself eventually and take paracetamol, it’s not enough though. I often start to feel tired-exhausted tired, then I can feel them, the pain kicks in and sometimes I fall asleep, then if I do start being sick, I’m in bed for a day or two being sick and trying to pass them, it’s awful

I’ve had kidney stones 3 times, and it’s the most pain I’ve ever been in (and I’ve had spinal surgeries!)
i had lithotripsy the last time, as one wouldn’t move, and my kidney was all swollen. It was painful, but not as
painful as getting one stuck. I was told to present to A&E if one was stuck; and they gave me morphine and admitted me.
its horrendous, and so debilitating. You have my sympathies and good wishes.

oh, and a renal consultant once said to me that some people ‘just make stones’. Unfortunately it sounds like we fall into that category.

@HollaHolla Thank you, yes it’s so painful isn’t it 😩yes they can’t seem to find a reason 🤷🏻‍♀️

I have been a stone maker. Aside from that and totally unconnected, I lost the use of one kidney due to an infection. As I now have only one kidney, I worried about getting another stone as they have always been symptomless until they move and get stuck (which is to be avoided if you have only one kidney). I got referred to a dedicated stones clinic at a London teaching hospital, where I am screened regularly so stones will be detected and dealt with before they cause trouble. More importantly, I got a lot of information about how to avoid them. They/you need to know what sort of stones you make. Luckily, I found this out when I was still with the previous local urologist and so asked them to send the stone they planned to remove for pathology to find out. I make calcium oxalate stones, so I need to avoid/have only rarely foods high in oxalate. There is a huge list of these but mainly tomatoes, spinach, rhubarb, tea, coffee, some fruits, lots of fibrous vegetables, bran (rules out lots of cereals), nuts etc etc. Google oxalate containinhg foods for more (if you find that is what yours are) The good news was that if you consume together with them with a good calcium containing food - weirdly as otherwise I should avoid calcium - (glass of milk or big yoghurt), the oxalate binds to the calcium and passes out of you without going through the kidneys. More important is to DRINK AT LEAST 3 LITRES of clear fluid every day - water or watery drinks are best. I have had no more stones since I started doing all this (9 years so far). If you pass a stone, try to keep it in a clean jar and get the GP or consultant to send it for analysis as this will help them to advise you on what to do for the best. Ask your GP to refer you to a stone clinic (mine is at University College Hospital).

@mrsjoyfulprizeforraffiawork Thank you 🙏 how do I catch a stone? With what and where do I get this from?

Every time you pee, don't flush until you have checked the pan for a stone. They sink to the bottom of the water. You can pick it out by hand and put it in a jamjar or something similar. As you know they are sometimes just like small pieces of grit but that should do too. If you can't pass one out as you usually do and you know you have got one stuck, I would go to a&e as it doesn't do to wait too long - you don't want to get an infection. If you do end up having to get one removed through hospital, get them to send stone(s) for analysis and make sure you chase them for the result when it is due. (Path results often don't get passed on to the patient these days as doctors are rushing around so much).

@mrsjoyfulprizeforraffiawork Thank you so much, much appreciated 🙏

I've no advice but lots of sympathy. I had kidney stones last year and it was horrific pain.

When I passed them they were the size of a grain of sand - I was expecting something at least crème egg sized.