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Old 05-21-2010, 02:25 PM   #1
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Pain Management for Chronic Kidney Stones? Need Advice Please!

Hi everyone,

Thanks so much in advance for your help with my problem. I have some chronic pain issues that I need to address, and I was wondering if anyone else has had a similar experience to mine.

I am an 18 year-old girl who has been developing excruciating kidney stones for almost two years. Lately, Iíve started forming them about twice a month. Overall, Iím in pain for at least 75% of the time, and itís making it difficult to keep up with my responsibilities. Iíve tried to prevent their formation using every natural remedy, OTC painkiller and nutritional supplement, all with no success. The only way Iíve ever been able to alleviate my kidney stone pain is with IV Dilaudid, OxyContin, or just the immediate-release oxycodone tablets.

However, itís EXTREMELY hard for me to convince my primary care doctor or the ER physician to give me anything other than Toradol and two daysí worth of Vicodin. In addition, I feel as though my entire health care team immediately characterizes me as a liar and drug-seeker, as itís uncommon for adolescents to form kidney stones. My mother and I have told them numerous times that the current medications are ineffective, but nearly all of the physicians who have treated me share an unreasonable phobia of prescribing stronger narcotics.

As a result of the negative experiences Iíve had at my old HMO, I am considering treatment with a pain management specialist. Although it appears that most pain clinics are more accustomed to treating pain caused by arthritis, fibromyalgia, and musculoskeletal injuries, I am hoping to find a pain management physician that is familiar with kidney stone pain and amenable to my requests as a patient. Out of curiosity, have you or anyone you know gone to a pain specialist for kidney stones?

Since Iíve never been treated by a pain management physician, Iíd love to hear about othersí experiences, and what kind of evaluation/treatment to expect on my initial visit. In addition, it would be wonderful if anyone happens to know of an understanding and cooperative pain specialist in CA, OR, or WA. Feel free to PM me.


Thanks!

 
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Old 05-21-2010, 06:31 PM   #2
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Have you tried taking an antispasmodic with your Toradol? Donnatal, Atropine Probanthine and many other brands are avaliable, and they can give very good relief if taken along with a pain killer. They are safe and nin addictive, so would certainly be worth a try.

 
Old 05-21-2010, 06:32 PM   #3
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

The other issue is what is causing you to form so many stones - are you under any sort of treatment for that?

 
Old 05-21-2010, 07:14 PM   #4
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

My sister had a horrible time with kidney stones in the past. They finally diagnosed her as having an extremely high calcium level. They removed her parathyroid and she has been "stone free" ever since. You really need to get to the bottom of what is causing the stones. Are you under the care of a good urologist?? I wish you luck sweetie, but doctors around here don't tend to treat that type of disorder with chronic pain management. They need to get those stones out asap and don't want to expose anyone to strong narcotics on an ongoing basis. Good luck

bullymom

 
Old 05-24-2010, 04:29 PM   #5
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Thanks so much for your helpful replies, jonnstar and bullymom. It's great to find someone else who has experience with this particular problem.
I recall being given atropine one or two times when I was in the hospital although I don't remember it as being really helpful or anything, but I will definitely inquire about the other ones you mentioned. Ever since I had my first stone, I have been taking Urocit-K daily to prevent the formation of new stones, although it does not seem to have helped much. I'm not really sure why I have chronic kidney stones, as I've always been an enthusiastic water-drinker, and follow a diet low in oxalate. However, I do have a family history of kidney stones, though I am the worst case in my family. For the past year or so, I've been seeing both a urologist and a nephrologist, and both have conducted a variety of tests and labs on me. My urologist and primary care physician told me that I should continue to moderate my diet and drink lots of water, but ultimately, there are just certain individuals who are prone to kidney stones, despite their efforts.
bullymom, it was really interesting to hear about the conection between your sister's parathyroid and her kidney stones. I'm glad to hear that she's doing better, and hopefully she never experiences another stone . As a 7 year-old, I was diagnosed with hypothyroidism, but it has been under complete control with a synthetic thyroxine medication for 10+ years. Did your sister suffer from thyroid problems as well?

 
Old 05-24-2010, 04:53 PM   #6
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

I am in pain management for my back (3 levels of disc herniations and spinal stenosis, DDD, plus more. Currently I take 100mg of Ms Contin three times a day and 30mg of Roxicodone 4-5 times a day. I also have become a kidney stone manufacturer. On election day 2008 I had the stones broken up and had a agent inserted in my penis for one week. I lived in the bathroom for that week. Then, at the end of April this year, I had to go through the whole thing again because of three Staghorn Calculi I developed. This time went more smoothly because I knew what to expect. Problem is, since the operation I have had infections and have become incontinent. I also have anemia which is mild on the blood work up, but requires me to wear 3 sweat jackets in 90 degree south Florida air.

Try to get an appointment with pain management

 
Old 05-25-2010, 10:08 AM   #7
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Quote:
Originally Posted by Eden021251 View Post
Thanks so much for your helpful replies, jonnstar and bullymom. It's great to find someone else who has experience with this particular problem.
I recall being given atropine one or two times when I was in the hospital although I don't remember it as being really helpful
bullymom, it was really interesting to hear about the conection between your sister's parathyroid and her kidney stones. I'm glad to hear that she's doing better, and hopefully she never experiences another stone . As a 7 year-old, I was diagnosed with hypothyroidism, but it has been under complete control with a synthetic thyroxine medication for 10+ years. Did your sister suffer from thyroid problems as well?
Eden, did you mean you were given morphine rather than atropine? If it was atropine, I would imagine you did not get any type of relief.

Also, I don't remember my sis having any problems with her thyroid. I'm so glad to hear you're under the care of both a urologist and nephrologist. I truly hope they can find a reason for your recurrent problems. Kidney stones are so painful. Best of luck with everything.

Bullymom

 
Old 05-25-2010, 05:53 PM   #8
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

The pain of kidney stones can be releived by atropine or other antispasmodics - not because they have any pain relieving effect, but because their antispasmodic action relieves the cause of the pain.

They are very commonly used in Europe for this purpose, along with an analgesic.

In English speaking countries, less so, for reasons of habit I think.

I know in Australia that there is a move towards using suppositories of Voltaren or Indocid (both potent NSAID's) instead of narcotics

 
Old 05-25-2010, 05:58 PM   #9
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Maybe ask the urologist or nephrologist if they see some type of pain management as an option so you aren't ending up in the ER multiple times when it's a pain issue that just needs pain treatment at that time. They may have PM doctors that they can recommend.

My PM doctor's practice does everything from arthritis, cancer, fibromyalgia, injury, and other illnesses. It may mean getting a few names and calling each one to interview them to see if they meet your needs.
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Old 05-25-2010, 06:04 PM   #10
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

There is also evidence that taking a thiazide diuretic each day (for example, hydrochlorothiazide) can help prevent calcium oxylate kidney stones - might be one to ask your doctor about?

 
Old 05-25-2010, 07:26 PM   #11
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

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.

 
Old 05-26-2010, 01:51 AM   #12
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Ouch! erfan, i'm sorry for all of the pain you've had to deal with. good luck and thanks for your advice

Last edited by Eden021251; 05-26-2010 at 01:52 AM. Reason: forgot to include detail

 
Old 05-27-2010, 01:50 AM   #13
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Thank you so much for your valuable advice and kind wishes of encouragement. Your suggestions have been very helpful, and I hope you all are able to find pain management therapy.

 
Old 05-27-2010, 01:55 AM   #14
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

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.
Thank you SO MUCH for your advice Boxerluver, it is comforting to know that you are not the only one with a rare health condition, and that there are options to treat it. I am currently trying to find a pain doc that is familiar with the treatment of chronic kidney stones, as it seems most of them deal with back back and whatnot. I'll definitely bring up the possibility of Sarcoidosis to my doctor, and fentanyl as a treatment option. Thanks again.

 
Old 05-27-2010, 02:17 AM   #15
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Re: Pain Management for Chronic Kidney Stones? Need Advice Please!

Try n remember to ask your doc about a thiazide diruetic - they seem to be pretty useful at reducing the amount of calcium in the urine, so there is less to preciptiate out and form stones.

Very best of luck

 
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