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Old 05-28-2010, 08:13 AM   #16
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Hi Eden,

I also suffer from chronic stones, although I don't have them nearly as often as you (I pass about one per year).

I don't understand how a doc could accuse you of lying. It's not possible to "fake" having a stone. They show up on scans. They cause bleeding that shows up in a simple urine test. It's very easy for a doctor to figure out if someone is lying about them. If tests are showing something and the docs are accusing you of exaggerating the pain then obviously they have never had a kidney stone themselves! It is one of the worst pains known to man. The only other explanation is that because of your age they are worried about narcotic abuse and so they are trying to make you feel guilty so they don't have to prescribe them. But that's simply unfair. It's totally unreasonable for a doctor to expect a person to control kidney stone pain with OTC drugs. I agree with others here that you should ask to be referred to a good urologist. They have experience dealing with kidney stones and know how severe the pain is.

My doctor is pretty narcotic-phobic himself yet he never hesistates to prescribe Percocet if I have a stone. All I need to do is go into his office and give him a urine sample and he knows I have a stone because of the blood that shows up.

I'm sorry you're having such a hard time with your docs. It almost seemes unethical the way you've been treated.

 
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Old 05-28-2010, 06:50 PM   #17
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Steve,

I am NOT saying you are doing this so please understand this is not aimed at you! But I have heard that people actually put blood in their urine to fake a stone to get pain meds. One of our local ER's even makes you give a urine sample through a cath so someone can't put blood in the sample. This really ticks me off because the last thing you need when passing a stone is have someone shove a cath up your uritor!! It's SO sad how far people go to abuse the meds and then how that affects those of us that are legit.

Edin,

The other thing I wanted to say is everybody has given great advice and you should definately try the things suggested. But if you have tried everything that the docs have asked you to, then that's when you need to look at a primary condition that is causing you to make stones. Because none of the things suggested will help,only getting that condition under control(if possible). But it's definately worth it to try the other things first.

 
Old 05-28-2010, 08:28 PM   #18
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Just to reiterate, taking a dose of thiazide diuretic each day has been shown to significantly reduce calcium kidney stone formation - given that it it is a well tried and safe drug, it would be well worth asking your doctor about.

 
Old 05-31-2010, 02:46 AM   #19
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

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Originally Posted by steve63 View Post
Hi Eden,

I also suffer from chronic stones, although I don't have them nearly as often as you (I pass about one per year).

I don't understand how a doc could accuse you of lying. It's not possible to "fake" having a stone. They show up on scans. They cause bleeding that shows up in a simple urine test. It's very easy for a doctor to figure out if someone is lying about them. If tests are showing something and the docs are accusing you of exaggerating the pain then obviously they have never had a kidney stone themselves! It is one of the worst pains known to man. The only other explanation is that because of your age they are worried about narcotic abuse and so they are trying to make you feel guilty so they don't have to prescribe them. But that's simply unfair. It's totally unreasonable for a doctor to expect a person to control kidney stone pain with OTC drugs. I agree with others here that you should ask to be referred to a good urologist. They have experience dealing with kidney stones and know how severe the pain is.

My doctor is pretty narcotic-phobic himself yet he never hesistates to prescribe Percocet if I have a stone. All I need to do is go into his office and give him a urine sample and he knows I have a stone because of the blood that shows up.

I'm sorry you're having such a hard time with your docs. It almost seemes unethical the way you've been treated.
Hello Steve,

Thanks for your reply, and sorry to hear about your chronic stones. I'm glad that at least you have a good doctor who is sympathetic to your pain.
You are TOTALLY right about the age bias, and guilt-tripping tendencies that so many docs seem to harbor. While it is somewhat unusual for young adults to have chronic kidney stones, it isn't unheard of, but so many ER docs have made it very clear that they don't believe I have kidney stones, and make a big production out of not giving me pain meds. Just because a patient is young does not mean that they cannot suffer from chronic pain.
That's really lucky that your doctor is willing to accept the hematuria as sufficient evidence of a kidney stone. I always test positive for blood in UAs, but it seems like so many doctors dismiss this as well. As Boxerluver said, some drug seekers poke themselves in the finger and squeeze a drop of blood into their urine, and ER docs usually collect a sample from me via catheter and make me undergo x-rays, and sometimes even CT scans (before I learned about their negative long-term effects), before they will write a prescription and believe me. Or, they ask me really ignorant questions, like "I see you have blood in your urine. Are you having your period?" As if I would not have mentioned that before my UA! Sorry about my ranting, it just feels like so many doctors are almost unethical because of their opiophobia
Even my urologist has told me that hematuria is not always indicative of a kidney stone, which is really frustrating. This may be true, but it's really irritating to hear when you're in crippling pain, and the same thing has happened many times before.
Best of luck with your stones, and thanks so much for your understanding

Last edited by Eden021251; 05-31-2010 at 03:19 AM. Reason: incorrect word choice

 
Old 05-31-2010, 02:51 AM   #20
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

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Originally Posted by jonnstar View Post
Just to reiterate, taking a dose of thiazide diuretic each day has been shown to significantly reduce calcium kidney stone formation - given that it it is a well tried and safe drug, it would be well worth asking your doctor about.
Thanks for your advice about the thiazide diuretic, jonnstar. I mentioned this to my urologist, and he told me that he didn't advocate this particular treatment plan for me, as they apparently tend to eliminate potassium (which I am lacking) in addition to excess calcium. But I really appreciate your suggestions, and thank you for your help

 
Old 05-31-2010, 03:00 AM   #21
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Quote:
Originally Posted by Boxerluver View Post
Steve,

I am NOT saying you are doing this so please understand this is not aimed at you! But I have heard that people actually put blood in their urine to fake a stone to get pain meds. One of our local ER's even makes you give a urine sample through a cath so someone can't put blood in the sample. This really ticks me off because the last thing you need when passing a stone is have someone shove a cath up your uritor!! It's SO sad how far people go to abuse the meds and then how that affects those of us that are legit.

Edin,

The other thing I wanted to say is everybody has given great advice and you should definately try the things suggested. But if you have tried everything that the docs have asked you to, then that's when you need to look at a primary condition that is causing you to make stones. Because none of the things suggested will help,only getting that condition under control(if possible). But it's definately worth it to try the other things first.
I definitely agree with you about determining the primary cause of my kidney stone formation, and looking into different methods of prevention first. Ideally, I would like to eliminate the cause of the stones entirely, and hopefully I will be able to do so sometime in the near future. While most doctors agree with me on this, they just seem to neglect the fact that I'm in severe pain at present time, and aren't helpful in finding pain management solutions while simultaneously trying to determine the underlying cause.

 
Old 05-31-2010, 03:57 AM   #22
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Did you ask about antisdpasmodic drugs to help releive the pain? Taking a dose of antispasmodic ith a strong NSAID is the most commonly used treatment in Europe for the pain of a kidney stone. Not saying its better than a narcotic, but it must be reasonable effective, and the docs would be more comfortable with prescribing it.

Re the thiazide, there is a combination drug called "Moduretic" which is a thiazide, but which actualy conserves body potassium - might be worth mentioning to the doc?

 
Old 05-31-2010, 08:40 PM   #23
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Eden,

Yeah trust me, after years of passing hundreds of stones I was infuriated once I was diagnosed and read that chronic kidney stones was possible. I mean couldn't they have figured it out, look at the conditions that cause kidney stones and see if I have one of them? Especially after being on all the meds like hydrochlorothyazide and that stuff you mix in a ginger ale,sorry can't remember the name of it. Nothing I did was stopping the stones and over 20 years from the time I was 19 until what now I'm 39. Like you said, you're there doubled over in pain and they act like it's nothing. I am blessed to have a great Urologist though, he won't leave you suffering.

I hope you can figure out what's causing them!!

 
Old 06-01-2010, 04:30 PM   #24
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Somthing that might help prevent midnight dashes to the ER is Stadol Nasal Spray. Its a strong analgesic, but it works a lot quicker than pills, because it is adsorbed quickly through the nasal mucous memberanes. That means you dont have half an hour of agony waiting for the pills to kick in. Just a thought.

Also, I seriusly suggest you ask your doc for a script for Bentyl, an antispasmodic. One or two of these taken along with your Toradol could offer realy good relief there are no guarantees of course, but it is a safe, nan addictive drug, so I'd say its well worth a try.

Very best of luck, both you and boxlover have my sympathy for what must be an awful condition. I hope they hit on somthing to help prevent these stones forming

Last edited by jonnstar; 06-01-2010 at 04:34 PM.

 
Old 06-04-2010, 02:08 PM   #25
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Quote:
Originally Posted by jonnstar View Post
Somthing that might help prevent midnight dashes to the ER is Stadol Nasal Spray. Its a strong analgesic, but it works a lot quicker than pills, because it is adsorbed quickly through the nasal mucous memberanes. That means you dont have half an hour of agony waiting for the pills to kick in. Just a thought.

Also, I seriusly suggest you ask your doc for a script for Bentyl, an antispasmodic. One or two of these taken along with your Toradol could offer realy good relief there are no guarantees of course, but it is a safe, nan addictive drug, so I'd say its well worth a try.

Very best of luck, both you and boxlover have my sympathy for what must be an awful condition. I hope they hit on somthing to help prevent these stones forming
Thank you so much for all your suggestions and research jonnstar. I really appreciate your time and effort, plus research I asked my GP about antispasmodics, and she said they might be worth a try if I don't respond to other treatments, as she is somewhat unfamiliar with this class of drugs. From what I know, antispasmodics are not widely used in the U.S., except for IBS and other GI conditions. As for Stadol, I am somewhat familiar with it, as my mom takes it for migraines, although it was recently discontinued in the U.S., though I believe the generic version might still be available. I discussed this option with my doctor and she said that this drug isn't really used for anything other than migraine pain relief, and labor/postpartum pain.

Thanks for your well-wishes, and research as well!

 
Old 06-04-2010, 02:23 PM   #26
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Auto-immune diseases and kidney stones

Quote:
Originally Posted by Boxerluver View Post
Eden,

I was your age when I started producing stones, I have had hundreds. Have some now actually. They could never find the reson why I was making all these stones and I took all the meds they recommended and followed all the diets and nothing helped because mine were from an auto-immune disease called Sarcoidosis. It's fairly rare and affects primarily the lungs, but if you have systemic like I do it can affect any organ.

As far as controlling the pain from the stones regardless of whether you have a disease or are just prone to producing them. I am on fentenyl and it helps tremendously. Although when one is passing or too big to pass I end up in the ER on I.V. Dilaudid. I would definately go see a PM doc and as long as you have the scans that shows the stones, they shouldn't have trouble giving you the meds. Everybody knows stones are one of the most painful things to have.
Boxerluver,

I'm so grateful that you brought up the relationship between kidney stones and auto-immune diseases. In addition, to my chronic stones, I also have an auto-immune disease (Henoch-Schonlein purpura) that's been present throughout childhood and adolescence, but the symptoms tend to manifest themselves in episodes, although the disease it self is chronic. Also, it is closely linked with renal failure and other kidney difficulties. As I have not experienced an extremely obvious episode in the past couple of years, I did not make the connection until you mentioned your auto-immune disease, and I did not realize this until a few hours ago! Also, because I had switched doctors a few years back, none of my current physicians knew about this.

Thank you SO much, I'm really happy I've finally got some idea of what the primary cause may be, and will hopefully not be turned away by PM doctors, as it is a chronic condition.

 
Old 06-04-2010, 04:16 PM   #27
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Eden,

I'm so glad you have found out what's causing the stones. I know before I was diagnosed I felt the docs were like are you trying the things we suggested? I swear I've been on every med and diet that is supposed to help kidney stones and I just kept getting them.

Yes, the pain docs should help you out. I am on strong pain meds(fentanyl) for my disease and it still doesn't cover the pain when I am passing stones. Plus I think when you have had so many like we have our uritors are shot and it makes it even worse. I know even "graveling" hurt like crazy. Recently my stones have been to big to pass and I have had to have lithotripsy. The problem is my stones don't break up like they are supposed to. Normally with litho, it turns the stones to sand and you can't feel it passing. All mine do is break up into tons of small stones that I have to pass and it's agony. I am usually in the hospital hooked up to a pain pump!!

There is no pain like kidney stone pain. It has had me crawling on the floor begging for the pain to stop.

I hope your pain doc will give adequate meds to cover the pain. I have to laugh when they try and give something like vicodin. If I am passing at home I would get Demerol before they put me on the fentanyl. My Uro is great, will not let you suffer. I love him!!

Again I am glad you found the reason!!

 
Old 06-04-2010, 05:06 PM   #28
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Hiya again Eeden..... just for info, Stadol Nasal Spray is approved by the FDA for all types of severe pain, not just migraine - it might be worth a try if you can convince your doctor to give you a script. It generaly works within 10 minutes, which is a lot quicker than oral drugs like Percodan

Bentyl has been in use for over 50 years, it is a safe and well established drug, again, if your doctor is willing to go out on a limb and give you a trial script for even a few tablets, you could find out of it offers meaningful releif - it may not of course, in which case you never bother with it again, but it just might.

Last edited by jonnstar; 06-04-2010 at 05:07 PM.

 
Old 06-10-2010, 12:24 AM   #29
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Finally!!! Yes!!

After 2 visits to the ER in the last four days due to possibly the worst kidney stone pain I've ever experienced, I finally was placed on long term pain management therapy! Luckily, my urologist was also on call tonight, and he agreed with the ER doc that I should be placed on a chronic pain management program. I did not even need to be referred to a PM doctor, as the urologist said he would treat this as a chronic pain condition. Right now, I have just been prescribed MS Contin twice daily and Roxicodone for breakthrough pain. My urologist also informed me that if these did not work, I could try a different strong opioid, like Fentanyl or Opana.
Thanks so much everyone for all your help, I REALLY appreciate it, and wish everyone luck with their pain in the future

 
Old 06-10-2010, 03:48 AM   #30
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

If it doesn't work ask about MS Contin 3x a day. From what I've heard it lasts 8-12 hours so if taken 3x a day you get LA coverage continuously.

Opana ER was great and only 2x per day. But had to be taken,each time, one hour before eating and 2 hours after your last meal. I tend to snack lightly thru the day and I'd often be unable to find a good zone in PM to take the med.

MS Contin sedated me a little the first few weeks but I've adjusted and this isn't really an issue in mu daily life.
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