DIagnosed with MSK and multiple stones

I am 23 yr old mother of two and through both of my pregnancies i was in and out of the hospital with infections and chronic pain and about 4 months ago was diagonsed with MSK in my right kidney. I was told there was a lil calsification in it as well but probably wasnt a stone well low and behold 3 weeks ago 1 am i am in so much pain i can barely breathe yet again i take a trip to the hospital and end up going for a ct to find out in my right kidney i have a 8 by 10 mm stone a 5 by 6 mm stone and four 1 mm stones and i also have a 2cm stone in my left kidney.. i go to have the 8 by 10mm removed because it is stuck in my ureter and the doctor is appauled at how young i am to be dealin with this chronic pain all the time?? what has helped any of you deal with the pain i want to be able to run around and go to the zoo with them take to the park and play and every time i do i have blood in my pee and flank pain for weeks afterwards!!

[USMCsilent_rank]

Oh my. Our situations are so similar. I am 24, a mother of one, pregnant with number 2, and I currently have 7 stones in my left kidney, and 5 in my right (and it could be more, those were just the ones they could see with an ultrasound, because I obviously cant have a CT or anything better) I also have had chronic pain since 2004 when I had my first stone. I have been treated like a drug seeker at the hospitals (even though they can see WHY im there for pain medication, but whatever) I have gone through so many doctors because they kinda just get to a point to where they just throw thier hands up in the air in defeat after a few trys at "fixing" my problem, I feel kinda helpless. The only things that have helped me with pain are Toradol (kinda like ibuprofin on steroids) and lots of water and REST. It does suck because every time you are active you have pain and bloody urine for weeks, but ive found its just a sacrifice I have to make, only doing one "major" outing maybe every 3-4 weeks. But, now that im pregnant, I cant take Toradol, so im kinda helpless again, and I end up in the hospital a LOT! Have you asked your doc about placing a stent? Its a lot easier (as far as pain) to deal with, and it makes it so stones dont hurt as much, they can pass easier, and makes sure they dont block your kidney up. That helped me a lot. It is very uncomfortable to have a stent in, but it might just make it more bearable. Also, I think some docs are wrong when they say stones "dont hurt" while they are in your kidney, because there have been times when I have had stones only in my kidney (none in my ureter or bladder) and I have been in horrible pain, but who knows for sure...but seriosuly, I'd ask about a stent....it really helped me A LOTTTT!!! ;]

[MSKshelly]

Sadly both of you are not alone.... that is what a lot of the info on this site is about.I have been doing a lot of research because of my own chronic pain with MSK.  There is an article under the healthpages and if you send me a private message with your e-mail address I can send you some more info on it. I have talked to 100's of MSKer's with the same issues and we have found some treatments to help with the pain issues. These are steps from least invasive to most invasive

Immediate treatments for pain:
heating pad, soaking in a warm bath
A Tens unit or electrical current machine helps with pain without drugs ask your doctor about using one in pregnancy.
Take a hand sized small river rock and soak it in hot water, have someone use massage oils and rub the rock over the kidney area.


Long term:
Have your Vit D levels check.  MOST if not all of us run low or really low in VIt D. Vit D helps you with pain and infection and can prevent stones as well.  The key is the right dosage so this must be monitored by your doctor since too much Vit D can cause more stones! THIS IS A HUGE ONE AND EVERYONE SHE BE CHECKED FIRST

Stay hydrated and decrease your meat intake to 6oz or less a day.

There are some natural antibiotics like Silverbiotics by American Biotech labs has helped some of us.  D-Mannose is the sugars in cranberry that help prevent infections without the acidity of cranberry.  If you don't have bladder symptoms. (which many of us do that is pain right above the pelvic bone and lower back pain etc) you can take cranberry or blueberry too.  Garlic is a natural antibiotics as is oregano etc.

We know that for many of us the reason for the pain maybe a biofilm or low level infection that sets up within the calcifications.  These infections do not show on standard tests or cultures.  There is a good article on this on the MOARK IC website,
I can give you the link.  Therefor long term antibiotic treatment does resolved the pain issues for many too.  The key is to take the lowest dose needed to keep the pain under control and give you quality of life.

Dr. Wolf has a surgery he wrote about for patients with chronic pain and MSK, I have the pdf article again is you give me your e-mail address.  I had this procedure done in 08' and it significantly helped me.

As a very last resort, some have had a kidney removed to deal with the pain issues.  One MSKer actually had a [procedure where they disconnect her kidney from the nerves and reconnected it in her body.  For her this has helped dramatically

Hang in there and I do hope you will share with us also as you learn more about
what helps you.  Just don't give up and keep trying to find treatments to give you some life back!

Shelly

[roulita]

Shelly can you explain the bladder problems you are talking about?
I suffer from low back pain that goes and comes.

[roulita]

Cont.  I had an MRI done on my lumbar spine and it shows a mild disk. But my pain does not seem to be associated with a disk. Docs say disc pain does not come and go in less than 24 hours. My pain will start in the lower back and radiate to my pelvic area and down to the front od my legs.

[roulita]

Sorry by the way msk of both kidneys. Have known about it for 3 years now. I am 35 mother of 2

[MSKshelly]

I have Interstitial cystitis and sadly many with MSK that I have talked to are later diagnosed with this.  It is a chronic inflammatory bladder disease that can cause the low back and pelvic pain.  There is info on this site as well as our MOARK IC site.

Shelly