I am 26. I have had kidney stones for the past 10 years. I spent 14 days in the hospital for stones and was diagnosed with MSK. I still get the run around with doctors and told that I shouldn't feel pain. To get any relief from pain I have to go to the ER, If threre is any suggestions, please let me know. Thanks.
I am sorry you have had to go through this....YOU ARE NOT ALONE...
I AM GOING TO REPOST, MY ANSWER AGAIN... for those of you who tire of me doing so I apologize yet, many of us suffer from chronic pain. Below is the post that at least out lines the current steps we have...., I hope to have my research article out soon, and stumbled onto some new info as well... so keep yours eyes open.
BUT IN THE MEANTIME HERE IS MY WHAT TO DO ABOUT THE PAIN POST!
There are several options to try for treating the constant pain, and yes there are several of use who have constant kidney pain even when there is no sign of a stone or infefction.
There are two articles listed on here... One is an e-medicine article about Medullary Spong kidney, the other one is listed as new procedure for MSK calcifications. Both of theses are on the lowere right corner of this page. (If that is not the right e-medicine article let me know.)
There are several therories for the pain and honestly the pain may have mulitple causes. One is that there is pressure that builds up in the tubes. The article below about a procedure by Dr. Wolf is mainly for this type of pain. The other reason that many of us suffer from chronic pain is a biofilm infection actually sets up within the many calcifications. Because a biofilm infection does not allow enough of the bacteria to slough off in the urine to showup on typical test for infection, these infections do not always show up on a urine disptick at the office or a culture. I can send you many articles about this if you would n like to pm me... also check under the health pages here.. they have done a great job of listing articles I am just not sure if they have my list of them for biofilms but we will work on that.
I have also written and article that is on my website for IC under MSK that explains this theory too. My website if mainly for IC)Interstitial Cystitis Patients in Missouri and Arkansas. However I put a link on the site just for MSK to post my research etc.
This article really needs to be update but I have just been working desperately to get the site information done etc, our support group is called MOARK IC and can also be googled.
The treatment options for the chronic pain appear to be as follows.
1. Increase your fluids and do not allow you kidney to get empty, since this increase pain,
2. decrease your meat intake to about 6oz a day. the pain level does seem to increase if our kidneys have to process a lot of protein from meat.
3. Ask you physician about trying a long term antibiotics... if you are on antibiotics for a long period of time does the pain go away?
Along that lines many of us have found so relief of help through a natural antibiotics by American Biotech labs, called Silverbiotics. You can google the title and their website will come up.
4. More recently we are learning that Vit D can play a role in increase pain, infection and stones. Ask your doctor to test your vitamin D levels,
it should be treated if it is too high or too low!
5> Going for massage for the muscles around the kidney etc. seems to help too, though many of us can not tolerate eve having our kidneys touched. The muscles seem to try to protect the kidney and actually knot up around it. Going to a good massage therapist they can keep these muscles relaxed, I go to on through my local hospitial and they are really really reasonable.
6. Last of all is the procedure by Dr. Wolf below. Though this is not a cure, it is a treatment. Some patients get relief dramatic relief by the procedure itself.
For those of us with chronic biofilm infections, the procedure seems to kinda knock the top layer of calcifications off, allowing the antibiotics to penetrate deeper into the kidney and therefore gives us a remission. My understanding from Dr. Wolf is that on average this procedure last about 2 years but can be repeated.
7. My doctor talked to a physician, who wrote an article in MS Consult entitled the Complicated Urinary Track infection, great article but this physician has had some antidotal success with patients with MSK who have chronic infection. I can not list the info here since at this point there is no research on whether or not this will work. We are trying it, I am better but that may be more from having the procedure and my upping my dose of Silverbiotics.
I hope this gives you so hope and direction. More then anything it will give you confirmation that your pain is real and you are not alone. Taking this into your doctor can help you to get better treatment since truthfully most of them just do not know and it goes against what they are being taught in medical school. There is some research etc, on the website below, I also do have several pdf of articles that we can not legally post the whole article here etc. Also the CL of this board has a really neat website she has put together on MSK..., (Nancy) it is also worth checking out and I think it is listed in a thread and if not in the health pages.
Hope this encourages you!!
Director of MOARK Interstitial Cystitis
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28
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