Cynsturina patient

[Bigdawg1]

I am new here and I have been battling cynsturina and calcium stones.please give ways to cope with pain

[curleytop1]

Hello Bigdawg1, please see my reply to your first post. Good luck - Curleytop1.

[Bigdawg1 in reply to curleytop1]

Look up cystiene kidney stones

[curleytop1 in reply to Bigdawg1]

Thank you, Bigdawg1.

[Bigdawg1 in reply to curleytop1]

No problem curleytop1 thank u for trying to understand this rare kidney disease

[Bigdawg1 in reply to Bigdawg1]

I tried to ask for help but no doctors where i live don't know anything about the disease so I have reached out to the best doctors in the world Dr Fredrick Coe Chicago university and Dr David Goldfarb.so I am under the Nord organization and there is about 20000 of us in the world

[JMST]

I've had this for 23yrs & have passed thousands of stones. I drink non-stop water but bottled or filtered & they r all not the same. I can taste a salty taste in some brands & tap is the worst. 2yrs ago started on cbd oil soft gel capsules taking each day twice a day & xtras when pain is worse. It doesn't work like taking a pain pill where u feel some relief instantly. It's hard to tell its working until u stop it for a few days then realize how much it really does help. I also use cbd oil hemp balm. It helps w/ muscle pain, cramping in muscles in back, leg aches, even put it on neck muscles for head aches. Both r expensive but when u have so much pain w/ several diseases u find away to afford it. I do still take some opiods which r hell on kidneys especially w/ kidney disease but bcuz of cbd im on low low doses of opiods & only take them when stones r obstructing. That obstruction pain is worse than anything including giving birth & nothing helps until obstruction releases on own or w/ stents. Just passing stones w/ no obstructions has become a routine now & I use cbd, meditation(music is my meditation), finding anything to do where ur not consintrating on pain, drinking so much water, stretching muscles every day, & exercise. I was offended when told i needed any type excercise each day bcuz I couldn't get how to do anything when I'm slumped over in pain most each day. But doing just simple walking & stretching back, legs, & core muscles actually helps. Doing it on reg basis strengthens muscles & helps w/ effects passing stones can cause. U get less tired, less back & leg cramps, & ur body just over all recoupes better during & after. They call my stones"jack" stones bcuz they have pointy prongs all around....like a game I grew up playing called Jacks. Its not the official medical term but they cause stones to rip tare & get stuck constantly. So one stone can take along time to pass & reek havoc on body, creating so many other symptoms & getting body ready for that is the best defense we can do. I'm in no way saying start running & doing vigerous excersise. Walking while getting groceries & shopping isn't the same as finding a time to just walk while breathing & focusing on it but still movemmt. If raining or to cold out then walk inside around ur house. Just don't find urself laying in bed or on couch day after day all day or ull find that passing stones gets harder & u become so tired constantly. I can't take any meds to help like Urocet K or Polycitrate K & others but if u can than do it. Some will help so not as many stones. And I'm sure the docs have had u change what u eat too. Some foods they say to eat for stone prob can effect those of us w/ kidney disease too so it can b hard to figure out. See a dietician to help. I now bcuz of cbd can get through hrs of obstructions which is bad on kidney disease. B checked regularly for ckd bcuz passing major amounts of stones causes high blood pressure & damage to kidneys & ckd can happen. Have heart checked too bcuz it all effects heart also. Talk to Drs about CBD & ThC stuff. Im supose to start on THC oils so I can stop opiods all together but again the costs r high. Insurance will pay for opiods which destroy the kidneys but not for natural stuff like CBD & THC oils that won't do the damage that others meds do. CBD has no tired effects or any side effects whereas THC can. I have tried THC oils while passing stones & it helps alot like opiods do. CBD helps but like I said it's not instant relief. Do not buy just any cbd espscially over internet bcuz fillers r used in many that can cause problems. Use trusted tested brands from healthfood/vitamin stores. Drops r different too & tastes nasty. That's why I use capsules & have it built up in system. Sorry I go on & on about this stuff & know I over talk. If nephrologist or urologist says ok but doesn't know much about cbd or thc then ask a D.O. dr. & legitimate healthfood stores will know all about the product & tests brands. I know & understand the hell we go through with this horrid disease. Hang in there & find anything positive to focus on. Laughter is how I get through it all. God bless.