Medullary Sponge Kidney Disease (MSK) Community
Chronic Kidney Pain
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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Chronic Kidney Pain

If you also suffer with reoccurring kidney pain whether you are passing stones or not...please respond as I am relieved to know I am not the only one.  Beginning to think that I would never find someone that can identify with me.  I would like to exchange information with another woman that has been experincing similiar symptoms.
Thanks for your time in advance.
12%
 (1) 
I have pain alot of the time too without relief.
37%
 (3) 
I have pain alot, treated with medication.
37%
 (3) 
I have pain alot, no one understands.
12%
 (1) 
I have pain only with passing of stones.
8 Members voted
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11 Comments Post a Comment
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489228_tn?1291535054
I would love to fill out your question however the chronic kidney pain issues for me are so much more complex then that.  Many of us, myself included do have kidney pain even when no stone shows in the ureter and no infection shows up on standard test.  Honestly I think that has been the over all theme for many of our lives.  I personally have spent the last 6 years researching this and am currently working on a research paper on this specific thing, it is 13 pages long with evidence, articles and explanation for the pain as well as treatment options that we at this point have found significantly helpful.  Though the article is not done yet we do have some great health pages here on this site, top right on this page.  I do also have many pdf articles etc. that I can
e-mail to you for your doctor if the info. below is not enough.

Here is the link to an article I put together on the chronic pain issues that we added to the healthpages here specifically to help patients:
Here is the links to a health pages I put together on the chronic pain etc. on Medhelp

http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185


http://www.medhelp.org/posts/show/565929

I believe the article I wrote in 07 for another patient explaining that we often also have a chronic infection that does not show on standard tests, I think it is also in the health pages but just in case it is not you can find it on our support site for IC patients, I also have a menu item for MSK as a place to put my MSK research. That site is www.moarkic.com the link directly to that article is below.

http://moarkic.com/content/view/68/56/

One of my favorite over all MSK articles is here, because it mentions the chronic pain issues;
http://www.emedicine.com/radio/topic433.htm

http://emedicine.medscape.com/article/242886-followup

The bottom line is this, there are many reasons that patients have this type pain.
We have found that treatment outcomes vary between patients.  We have also found
between us that a Vit D deficiency is common, on one of us tested so far in the normal range.  I personally was very low.  

Some have found pain relief by the Vit D alone others of us it is more complex.  I have a chronic biofilm infection that has set up within my calcifications.  The think with the Vit. D however is that it is not wise to just start taking it..., you need to be tested. The reason is that according to several researchers that work with MSK, for those of us that have metabolic issues esp. where we put too much calcium in the urine, too mmuch VIt D can increase the stones. So this should be done with your doctor closely watching your blood levels etc.

So not only is there a VIt D level issue,  many of us have a chronic infection that does not show on standard test, but there is also a procedure done by Dr. Wolf that he believes relieves the pressure that builds up in our collecting ducts.  For some of us again the surgery alone helped, others of us needed antibiotics treatment to follow up
but the procedure seems to have blasted back into the biofilm infection allowing the antibiotics to work better.  Even in the chronic infection arena some have found some
naturals including Silverbiotics by American Biotech Labs made a significant improvement in their infection pain level.  It does for me but I also have to live on 2 full strength antibiotics... I however am an extreme case!

Shelly

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Avatar_f_tn
Thanks for responding to me, I am relieved to learn of your efforts to help others with health issues such as your own.
I have had chronic infections and kidney pain that has gotten unbearable as of late.  I would have what I would describe as bouts of pain and infection.  I would barely get by when I would have these attacks, if I would go to the ER they would not believe me when I tell them of all the problems I am having if they could not find something with their silly dipstick urine test.
If you have time I would love if you could e-mail me with articles that I could take too my doctor.  I have went without a family doctor for so long and finally have one that has none of my old medical files.  I see a urologist but am considering asking for a referal to see a kidney specialist.
I am 40 now and have suffered from kidney stones regularly for over 15 years now.  It is consuming my life now.  I have felt isolated like no one understands but now I know that I am not the only one, but one of many.
Thanks for your time in advance.
Pauline
e-mail - ***@****
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1218312_tn?1266610807
I have sponge kidney too,i just found out yesterday, ive also spent many years trying to find what was wrong with me, i have a constant pain in my back due to the condition, there is no treatment other than pain meds and treating uti and stones.. im looking for a doctor that may have more about this, any ideas
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489228_tn?1291535054
Frances,
   Go to the links I listed above, read the healthpages and the article I wrote on MSK and pain, and pm me.. I can send you articles and info.  Together we are finding answers,
treatments and help. I am glad that you found us.  There is no where else to find the information and help we have found together here on medhelp!

More later!

Shelly
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168348_tn?1379360675
Hi,

It's been awhile since many on this post have posted .. how is everyone doing?  Would love to hear updates a few years later!

C~
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Avatar_f_tn
I to suffer from MSK. I was 17 when I found out, I am 28 now. My first time passing stones was when I was 17 and I had passed 10 stones at one time. The pain was so unbearable i passed out. My kidneys are full of 20-30 stones at all times.  The form of MSK i have is extremely rare. They have no treatment yet. It really ***** being in pain 24 hrs a day.
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Avatar_m_tn
I am new to this website and have found it so incredible how many people have went through the same experiences with this disease that I have.  I am 39 and was given the official diagnosis about 5 years ago. I started passing stones at 13 and have passed somewhere in the range of 30+ stones, although its hard to say exactly because I passed an unknown amount of stones with lithotripsy.  I am no longer monitoring my stone load that I have now so Im really unsure how many I have at this time.  My nephrologist told me that I can no longer get any more CT scans as my radiation exposure is so high that its not safe to do and figures that the treatment will not change by knowing. Since I started going to my nephrologist and getting medication (potassium and water pills) I have found that I have alot more good days than I used to. My past experience with urologists has made me decide that they are only a last resort for treatment.  As I have read so many times through this forum, I was also told that there is no reason that I should be having chronic  pain unless a stone is passing, its really unfortunate that the doctors are not listening to all the people that have this disease and realize how much daily or almost daily pain that we all go through.  I have finally been relieved of the infections and only get 1 to 2 a year now but unfortuantely the permanent damage is done to my bladder from the continuous past ones which makes me feel like I have a chronic bladder infection when in fact I dont. I have just decided to come to the realization that this chronic pain is going to be something I just have to live with along with the irritability, exhaustion, and pain meds that comes with that.
I was not aware that there is different forms of MSK until I read your post. I would love it if you could explain the different forms if you wouldnt mind.  As with alot of others, I was never given any explanation or information from any of my doctors about this disease, everything that I know has came from the internet and reading other peoples experiences with it.. thats really unfortunate.  I wish you the best of luck and want you to know you are not alone with this hidious disease.
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Avatar_f_tn
I have msk, I am 18 and have been passing stones since I was 8 years old. I have fibromyalgia aswell, I have severe kidney and bladder pain but no signs of uti or stone so it goes untreated and I have to just lay there and hope to God I fall asleep so I can get some relief.  I just passed a stone ttoday, plus having fibromyalgia pain on top of that I feel hopeless.  My doctor wont up my prescription so that I can get relief more than once a day and so I can take it more than half a month he gives me 56 (5mg) oxycodone knowing that I can't take anti inflammatories and have tried every non narcotic pain reliever out there, knowing I take 15-20 mg so there's 3-4 pills if I wanna be out of pain :( he said that msk doesn't cause pain and he doesn't see a stone or infection so I'm forced to just deal, when I'm in pain from two diseases, two chronic painful diseases.  He says I need to exercise, but I can barely get out of bed most days :( I have been to many doctors, and specialist most of them told me to drink fluids and tell me I'm not in pain. The one that told me I have msk was nice and helped me get on pain management and now pain management isn't doing crap to manage my pain :( they work with my doctor but they don't want me taking narcotics but I've tried everything on there 15 page list for pain :( my doctor just keeps saying it's not kidney pain its fibromyalgia ...but I know the difference! I'm so frustrated that my doctors wanna treat me like I'm too young for pain! I had to quit my job I can't even do dishes!  Does anyone have trouble with exercises, or have severe kidney pain when you have to poop?  I just need someone else to help me!
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168348_tn?1379360675
Hi .. you may want to repost in a separate post so that it gets better visibility.  WELCOME to our communty.

Feel so bad for you ... MSK is not easy and can be very painful.

C~
MSK w/stones
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Avatar_m_tn
I have MSK and I am going crazy. All the drs say that the chronic pain is in my head and my body is craving pain medicine. I am so happy to read all your posts. I am not crazy. IT IS REAL
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168348_tn?1379360675
There are so many that don't know enough about MSK to be able to fully understand it.  Also, so many of us have gravel or sand passing and it can really hurt from start to end .. yet .. nothing ever shows up on ultrasound, xray or CT Scan.

It is Real for so many of us .

Here is a great  piece in our health pages written by a member:
http://www.medhelp.org/health_pages/Urology/Why-Does-it-Hurt-so-Much--yet-No-Stone/show/383?cid=185

Why does it hurt yet no stone?

C~
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