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.

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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

[MSKshelly]

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

[FrancesFarmer]

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 - ***@****

[sorebackmomma]

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

[MSKshelly]

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