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Pain management for chronic kidney stones and related pain? Any advice would be greatly appreciated!
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HollyMarie111151 posted:
Hi,

I am new to the Pain Management Community and was hoping for some advice, or suggestions from anyone who has experienced a similar problem. I am a 19 y/o female with chronic kidney stones. I developed my first kidney stone when I was 17, was stone-free for about a year, and in the past 6 months, I started to develop about 3 kidney stones every month. I have tried everything in terms of dietary modifications, supplements, yoga, acupuncture, etc, and am currently taking medication to prevent the formation of new stones, although it does not appear to be working.
While I am in severe, level 9-10 pain 50% of the time, the other half of the time I have constant spasms and aches in my upper right side, lower back, and groin. I have consulted with several urologists and nephrologists who usually are hesitant to prescribe opiod analgesics, although I've tried multiple alternative treatments without success. I think it is a primary concern to isolate the cause of my chronic kidney stones, but in the meantime, pain management is also necessary, although most doctors seem to neglect this aspect of my treatment.
When I am passing a kidney stone, the only drug that has been helpful is intravenous Dilaudid and some Toradol, or a high dosage of oxycodone, either in IR form or Oxycontin. At the ER, most doctors assume I'm a drug seeker because of my young age, and are never willing to prescribe more than 15-20 Percocets, which last me less than a week. When the Percocet runs out, my PCP is usually willing to write me an Rx for 20 more, but I'm so sick of having to visit the ER 2-3 times every month, and then beg my PCP nearly every other week to write me another Rx, which isn't even very helpful. I'd love to be able to go to a pain management specialist, and get a steady month's supply of pain medication, which would also eliminate the numerous and inefficient visits to the ER. Has anyone here been to a pain management specialist for chronic kidney stones?
I forgot to mention this, but my urologist thinks that the spasms and chronic aching in both my left and right flanks, lower back, and groin could possibly be due to severe, chronic musculoskeletal pain, or neuropathic muscle memory from my previous kidney stones.

Thanks for your help
Reply
 
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greg8846 responded:
Hi Holly;
And thank you for being here on the pain board with us. You know doctors sometimes discount the fact that some
folks do have problems with Kidney Stones being a Chronic
Pain problem, but it is and it needs to be treated as one also.
You know Oxycontin ER Extended release and Oxy IR immediate release might be a good combination for you.
Make sure when you go to pain management that you have
as much and as many records to show and prove your problem.. The four types of kidney stones are;

1. Calicum Stones;

Prevention can be just increasing your intake of fluids. But for the Calcium type stones a Thiazide diruretic can be helpful
Phosphate prepartions can also help to by decreasing the amount of calcium in your blood and your urine.

2. Uric Acid Stones

A couple types of medications can be helpful. Zyloprim and aloprim. These reduce the amount of uric acid levels in your blood and in your urine. It strives to keep your urine alkaline.
Allopurinol and a alklinizing agent may help to dissolve the acid stone.

3. Struvit Stones:

Long term antibiotics may help in a low dose to keep the amount of bacteria down in your urine.

4. Cystine Stones:

These are kind of hard to treat drinking lots of fluids like water and Gatorade can help you to keep the urine going and help clean out your kidneys. 8-14 glasses of water a day is good to. Well good luck if i can help you again please let me know.
Greg Armstrong
 
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HollyMarie111151 replied to greg8846's response:
Thank you so much for your reply greg! It is absolutely wonderful to find someone who can sympathize with my pain and immediately judge me as a drug-seeking liar. I've only found one doctor who was willing to prescribe me OxyContin ER, and unfortunately, she is no longer practicing medicine in my state. However, the OxyContin worked wonderfully, and it seems as though it actually has less side effects than the weaker painkillers, such as Vicodin, Percocet, etc. Hopefully, I will be able to find a pain management doc who is willing to prescribe this medication, but my state has the most repressive, opiophobic laws in the entire country regarding the prescriptions for painkillers. Also, my GP, urologist, and nephrologist are all unwilling to give me a referral to a pain management clinic, but hopefully they will if I complain persistently enough.
I usually produce calcium oxalate stones, and have been taking a thiazide diuretic daily for the past 18 months, although it does not seem to be working. It's also really strange that I have stones, because I have always been a really enthusiastic water-drinker, and am drinking about 2 liters daily now!
Thanks you so much for taking the time to help me with this problem, and I really appreciate your understanding and effort. You seem very well-informed about kidney stones, do you suffer from them as well?
 
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Fishfolk replied to HollyMarie111151's response:
Hollymarie,

I have passed hundreds of stones and currently have more. I started making stones around age 19 so I understand about the age thing and docs being leary of prescribing strong meds. Mine to are calcium oxylate and are hard to break up. I have tried every diet and every med to try and stop or slow down the stones. The doctors had no idea why I was producing them. Well in 2003 I was diagnosed with an auto-immune disease and one of the conditions from it is chronic kidney stones. I say this to tell you if you have tried all the options out there and nothing is working you might want to look into an underlying condition as to why you have so many. I was vry angry that they couldn't figure this out but my auto-immune disease is somewhat rare so I guess that's why they couldn't figure it out.

I have been very blessed with a great Uro. He does not let his patients suffer and is aggresive with the pain meds. Once I was diagnosed I was referred to pain management and put on meds every day. But if I am passing a big stone or it's too big to pass I end up admitted to the hospital on a pain pump.

As long as you have the records to show the docs, they should prescribe for you. I think it's terrible that you are having trouble. Kidney stone pain is the worst! I have literally been writhing on the floor begging for the pain to stop.

I hope you can get some relief!!
 
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HollyMarie111151 replied to Fishfolk's response:
Fishfolk,

Thanks so much for your reply! It was REALLY helpful to hear about the link between your auto-immune disease and chronic kidney stones. I also have had an auto-immune disease (Henoch-Schonlein purpura) since childhood, but I had considered it to be unrelated since it had not manifested itself with the typical symptoms for quite some time, and I thought the two were completely unrelated. As it turns out, HSP causes renal problems/pain in many cases. I only made this connection EXTREMELY recently, and thanks so much for helping me to realize this
Also, if you do not mind me asking, what particular auto-immune disease do you suffer from?

Thanks again, and best of luck,

Holly
 
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vodin responded:
First...ill answer as to anyone

1-get a urologist
2-get a nephrologist
3-see a pain management doctor

If you are passing more than 1 or 2 stones in a lifetime you may have kidney disease like i do and need to know what kind and what can be done to reduce the stones.

If you are like me and create and pass as many as 10 a month then you must be on meds for pain or eventually you will kill yourself...trust me been there almost done that.

-now my short story-

My mother had 2 forms of kidney disease (renal tubular acidosis and medullary sponge kidney) and they are both 99.99% of the time female related BUT thanks mom as myself and my brother both got them and very bad.

ive passed to many to count and have had prob 30 removed surgicly...one the size of a golf ball...eventually ill have to have a transplant.

Things that will help-

-reduce salt intake
-exersize helps move stones and keep them from growing in the kidney (stones dont grow but they will attach to one another slowly gaining in size)...exersize/car rides (vibration) help move em and pass em BUT cause more pain
-pain is ok really because if you are passing a stone it means no hospital
winter is bad for me cause im a hermit (canada winters) but summer i walk alot and it helps
-eat good and try and have extra reserves for those times you may have to have a surgury

I am currently on 150mg long acting morphine 2x a day 5mg fast acting for breakthru...but i am at the point that ui may have to increase

Reality is if you are on opiate pain meds daily YOU WILL BE ADDICTED just the same as a heroin addict and if you run out before your refill the withdrawl is a biatch...just cause a doc gives it to you doesnt mean there isnt drawbacks...i hate meds but i have no choice


all i can think of for now
 
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ctbeth replied to vodin's response:
Hello, and thank you for all the info,

First, this discussion is about three years old. In this case, it can be better to start a new discussion, lest your posting can get lost among the older replies.

Second, physical tolerance and dependance are NOT the same thing as addiction. I'm not going to elaborate on this now, but there is much written on this site regarding this same topic.

Third, opiate medicines should always be taken exactly as prescribed my the MD who prescribed them. There should be enough med to last the entire month, or time period for which it is prescribed.

No one has to run out before the refill, or new prescription, is due.

No one wants to have pain and have to take opiate pain meds. We are prescribed them because they are among the best treatments for chronic, intractable pain.

We all take them because our pain warrants their judicious use.

I hope that you'll start a new discussion; you have valuable information to share

Addiction and physiological dependance are not the same thing.

Dependance is a bio-physical phenomenon; addiction is a psychological disorder.

Happy Easter,

CTB
 
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An_251285 replied to ctbeth's response:
Hello!

Thank you for the information! While I am in agreement for the most part I must say that some of us that suffer from this terrible disease such as myself, find ourselves just blindly searching the web and looking for any soul out there that is dealing with the same issue. I personally have MSK and Chronic Kidney Stone Disease and I am 44 years old and have been suffering with this terrible disease since I was 13 years of age. I now have been producing for the past 2 years stones everyday at the rate of 5-10 stones which range fro 2mm-5mm, (yes that is correct 5mm and I have each one documented with my Nephrologist). Now I too have been placed on daily pain medication and jump through all the hoops that are in place now to procure these much needed medications. Thanks to the people out there that abuse these medications we that are afflicted with such intense pain must endure constant scrutiny, endless repetitive questions and a constant need to defend our need for this medication that ruins our lives for the most part yet provides slight relief from the pain which at times is so intense we just as soon die than to deal with it another hour. And that is just scraping the surface! In addition I have to deal with the relationship aspects of being a father of two beautiful baby girls and a new husband to a beautiful and caring woman who because of the medication I am on has to most nights go to bed alone because of my insomnia and decreased or non-existent sex drive! So all that being said while I agree with your comment about not running out of medications prior to their renewal I must protest slightly and interject that some of us in the throws of such mind numbing pain may take additional medication that is right there rather than wake our spouse and dress our babies at 3 am and drive 50 miles to the nearest Emergency Room only to have the Doctor give us a double dose of what we already have at home. Now of course no one should ever self medicate outside of a Doctors order however when I have had this happen to me I have taken the path of least resistance and been much more comfortable than the alternative which seems burdensome to everyone else just to deal with my pain! Now of course some of us just get beyond medication and stop the pain permanently which is what my Father did six years ago at 3 am in the morning when he was writhing in pain and decided that it was selfish to ask someone to drive him to an ER so he gave in and took his own life rather than deal with one more hour of pain, ( He also was an MSK sufferer with Chronic Stone Disease). So I guess I have learned that I wont pass judgments anymore as I used to when it comes to what I would do if I was in someone else shoes. We are not Doctors this is true but we are human and sometimes we may take more medications because of pain, unless someone else has ever passed 10 stones in a day and can tell me different! If there is an alternative out there besides these medications I would be first in line! I hope someone comes up with a better way for us to cope with this, but until then I may take an additional pill from time to time when I am pacing the floor and pulling my hair out, unless of course you know a Doctor that will make a house call or even answer their phone at 3am?
 
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annette030 replied to An_251285's response:
Talk to your doctor before you get in trouble with pain, have a plan ready so you can avoid the ER as much as possible. I have not walked in your shoes. I do have chronic pain and migraine headaches, but have avoided the ER for many years, thanks to my doctor and careful planning ahead.

I am sorry your dad's choice was suicide, it must be very difficult for his family.

Take care, Annette
 
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ctbeth replied to An_251285's response:
Dear Anon,

If I was not coping with pain, I would not be a member of this community.

You can click on my name or "mug shot" and read my "About Me". If you'd like, you can post about you and your history on your profile page and write an "About Me" soothers can have a brief info about you and your pain syndrome.

The problem with taking more-than prescribed it not a moral issue to me. I make mention because then you're left with un-medicated pain and withdrawal.

If your MD is not allowing you for an additional short-acting med for breakthrough (when the pain gets out of control), then please make mention of this.

Please tell your MD exactly what you have told us- perhaps print out your above post.

This is not about my making judgement; it is about your being left with no meds and having withdrawal added to the misery.


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