Medullary Sponge Kidney Disease (MSK) Community
why am i in so much pain all the time?
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why am i in so much pain all the time?

i am 17 years old. i have been dealing with this since i was nine. they finally researched and found out i have MSK. the doctors say i should not be in pain. but i am, all the time. im in so much pain i soemtimes cant walk. i take pain medication when it gets bad but...my doctors said i shouldnt be in pain and they arent giving me anymore. what do you guys do for pain? is there any surgery i can have to help this? what should i be eating...i need help. im young and alone and this is just putting my life on hold  i miss having fun. it didnt bother me until last year when i was hospitalized for a month, i pass 2-5 kidney stones every month. i am in the hospital for pain about twice a month and i need someone to talk to that knows what i am feeling.
Tags: WHY, MSK
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168348_tn?1379360675
Hi,

Welcome to our community.  So so sorry to hear of your pain ..pain is just awful and sometimes only those on this community can really feel/know what you are experiencing.

Here is our health page area where there's tons of info put together by our members.  Maybe this will help with some info for you:

http://www.medhelp.org/health_pages/list?cid=185

Please keep posting .. many here can help you.

C~
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Avatar_f_tn
I'm so sorry to hear of your pain and how difficult it is for you. My 14 year old son was diagnosed this week. We were told low sodium diet helps- no fast food, no restaurants, all homemade and lots of water. I'm really hoping those things work and I truly hope you are able to find something that works for you so you can begin living a happy pain free life.
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Avatar_f_tn
Hello,
Sorry to hear you are feeling so bad.  Although I do not have MSK, my daughter does, so I feel for what you are going through.  I'm glad to hear that you got a diagnosis.  It took close to 10 years for a urologist to finally say what he thought my daughter's issue was. She was like you in that she started having issues very young.  Knowledge is power and the more you know about your condition, the better off you will be.  If you see a doctor who doesn't work toward helping you feel better, then find another one!   You didn't mention if you have urinary tract infections along with your kidney stones.  If you do, then it is important that you make sure your doctors are treating them aggressively because people with MSK sometimes have trouble getting rid of the urinary tract infections.  If you don't get infections, you want to try and keep it that way!   It is also important to try to determine what type of stone you have so that you can make proper dietary changes.  I know my daughter's doctor did a study called Litholink, you could ask your doctor about that.  Also, please read all you can about MSK.  This site has a lot of good resources.  Try to eat healthy, watch your sodium, drink lots of water, avoid soda and drinks that contain a lot of salt--that is some advice we got.  Please take care and let us know how you are doing.
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1531898_tn?1292259805
I have MSK, Im 26 and I was diagnosed almost 2 years ago upon all the research I have done I know now that not all doctors understand MSK to the fullest. Most think that you should only experience pain when you are passing a stone. I am in chronic pain most of the time, good days and bad days. I am sorry you have to go through this so young :( Just know that you are not crazy and it does in fact hurt! even when you are not passing a stone. You may very well have a uti and sometimes they do not show up so make sure you continue to push your doctor to do regular uti testing and also ask for some pain medication. I currently take tylenol 2 it doesnt help much but at least it is something for those days when you cant take it anymore. Also to sleep I find they help as well as a heating pad <3 Goodluck

Amanda
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Avatar_m_tn
hey, im 17 too and the doctors have just told me i may have Msk too. i was diagnosed with nephrocalcinosis when i was 13, and since then iv had 6 operations to remove stones and constant kidney infections. iv been at a top children hospital until a month ago, was moved to kidney specialists and have now been told this is what they think i have. i have bouts of excruciating pain for no apparent reason other than the fact the my kidneys are full of stones. i have just managed to get off morphine, which i have been on since my last operation last November, as i had unbearable pain constantly. at the moment,touch wood, im doing ok. i still take painkillers everyday, but not what i would call alot, and its enough for me to be able to get on with life. i use heating pads to sleep with which helps with the pain at night. nice to hopefully have a name for what iv got!
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489228_tn?1291535054
I just want you to know that I speak with 100;s of MSK'ers each year that have the same symptoms etc you do.  The problem or one big problem is that  a biofilm infection sets up within the nephrocalcinosis,  Since a chronic low level or biofilm infection does not show on standard test, and most docs are not educated about BIOFILMS. I have written an article on this and do have some research articles that can help your docs under stand. For more info and artilcle feel free to send me a message,
also read this article in the healthpages!

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