Editor’s note: Kayla contributes posts on her experiences as a patient with medullary sponge kidney, a condition that causes a large amount of kidney stones to form and which can cause chronic pain. Her experiences may therefore not represent those of all kidney stone patients.
In my previous post I touched on just how painful Medullary Sponge Kidney (MSK) can be. Sadly, much of the current research suggests that it’s not painful unless you are actively passing a kidney stone or have an infection. Myself, along with many other MSK patients, know that this is NOT true but no one can put their finger on why it’s so painful even if you aren’t having an episode.
There are a few theories out there that try to explain why we have pain for what seems like no reason at all, from calcification’s in the kidneys to embedded stones scraping and moving. Some patients find that they’re in pain when they exercise, walk too far, or even drive in a car. When it comes down to it, the pain we feel is not in our heads and we are not crazy for feeling it.
One of the hardest challenges of having MSK is getting adequate help. Most of the time, doctors only do a little research on this challenging disease or briefly remember it from their studies in medical school and take it at face value. When it says we shouldn’t have pain, they believe it. Many people are left to suffer because they are not believed or not taken seriously.
Since I was diagnosed in 2004, I’ve seen many different doctors… some good and some bad. Some are willing to help, and others have brushed me off. I’m very fortunate to be one of the few people I know that has a supportive care team. My internist prescribes me adequate pain medication to help me live a normal life, and while she doesn’t claim to know a lot about MSK she believes and wants to help me… which is why I value her so much. My urologist works with a nephrologist and a dietician to manage and prevent my stones. I’ve found it helpful to keep all my doctors in one care system so that they all have access to my medical and prescription records. When I DO need to go to the ER I go to a hospital that is affiliated with my doctors.
At this point, you may be thinking that with such awful and chronic pain a pain clinic would be beneficial. I’ve been down this road and it’s not for me. Personally, I was not willing to get numerous injections or try a myriad of different pills multiple times per day. However, I do know of others that love the care they get at their pain clinics. It’s something worth looking into… but please make sure you do your research on the clinic before.
Anyone with MSK will tell you that ending up in the emergency room is one of the most awful experiences you can have. Often times we don’t present the “classic” kidney stone symptoms of a high fever, bloody urine, elevated blood pressure, nausea and vomiting, and even knock-you-on-the-ground pain (this is not always the case though!). We’ve learned to live with a certain level of pain have usually have a high threshold for it. ER doctors don’t have the long-term relationships with their patients like urologists, nephrologists, and general practitioners do. With the high incidence of drug-seekers today, their skepticism is definitely warranted. Unfortunately for us we don’t always “fit” the template of what a traditional patient in pain from a kidney infection or a stone looks like and we are often treated like we are seeking pain medications. We’ve ALL had an experience like this, and there’s nothing you can do about it. Some people suggest bringing copies of CT scans, stones you’ve passed, or even research on MSK (the information on this site is fantastic to print and bring) with you. If nothing else, it will make you feel more confident.
Personally, I’ve found a good combination of medication that has kept me out of the ER since March (quite the feat for an MSKer). I’m on a daily antibiotic (Nitrofurantoin) to help keep infections away; and for the painful days I have Vicodin. For the EXTREMELY painful days I have Oxycodone. This may not be for you. I’ve talked with others who have found that Tramadol, Dilaudid, Morphine, Percocet, Toradol, Ibuprofen 800, or just plain Acetaminophen do the trick. It’s important to bring your pain concerns up with a doctor that you trust so that you can live the most normal life you can.
I’ve always been exploring other pain-reducing techniques such as different breathing techniques, mindfulness meditation, and biofeedback. My internist referred me to a health psychologist that works with me on them. Talk with your doctor about seeing a psychologist that can work with you. It can’t hurt.
The bottom line is you don’t need to be in pain every day. You need to live a normal life, and you need to be able to function. Your pain is real, and you are not faking it nor are you crazy for feeling it when everyone says you shouldn’t. Finding a doctor to help you takes trial and error and don’t feel discouraged if you strike out the first, or second, or third time with one. Stand up for how you feel and what you need. Be willing to try new ideas and give them time to work. If they don’t, move on. One day you’ll find the relief that you require if you are persistent.
Kayla
You made a good point that an MSK ultrasound system can help a lot in decreasing the likelihood of going to an emergency room. I’ve been thinking about getting such equipment for home use because my husband has been having a lot of problems with his body’s MSK system recently. Getting to detect what’s wrong when he feels some pain would be a huge help.
I’m in tears reading this. All the responses too. I was diagnosed a little over a year ago with MSK. Took them 6 years to find. Hundreds of er visits, drs who don’t listen and tell me “kidney stones only hurt while passing.” Drs who blow you off then tell you after all these years not to be emotional at your doctors office. After 3 denied referrals to better care. I’ve had to quit my job of 10 years as a pharmacy technician, missed things with my kids and husband due to the pain caused by msk. I’m so flustered and at this point ready to give up. It’s been almost 8 years now since I first noticed the horrible pain. I’d rather give natural birth again. I quit going to the er for the pain because of the way I get treated by the drs and nurses. My pain management dr will only prescribe for my back. Ask for something for breakthrough pain and am told to go to a nephrologist. Yeah, if I could get an approved referral I gladly would. My biggest and most annoying problem with every dr I have been to in 8 years is that no one listens. They all just look at you like you’re crazy. And now when they drive you to your breaking point you can’t be emotional cause it’s annoying. Like seriously!?
I am living in Denmark and have had MSK during 11 years.
I take UrocitK (potassium citrate) to reduce the development of stones and an antibiotic by name Trimopan to reduce othervise constant pain. ‘
I have been operated several times for stones, but do not see it as a problem.
But now the constant pain is back and it looks as the antibiotic , Trimopan, no longer works.
I very much like to learn, what types of antibiotics you use in the US?
I am not on Facebook.
my daughter also has MSK she’s been treated since she was very young and is now 37 years old through all the different doctors urologist everybody she seemed mostly they push opiates this is caused my daughter to be addicted to even stronger things I’m so scared for her I wish there was some kind of help out there I could find for her it’s frustrating with so many people you would think these doctors would find something besides these terrible drugs to put these people on for pain and yes she is in pain all the time
my daughter also has MSK she’s been treated since she was very young and is now 37 years old through all the different doctors urologist everybody she seemed mostly they push opiates this is caused my daughter to be addicted to even stronger things I’m so scared for her I wish there was some kind of help out there I could find for her it’s frustrating with so many people you would think these doctors would find something besides these terrible drugs to put these people on for pain and yes she is in pain all the timecontent://media/external/file/11133
Sorry I was speaking into my phone
hi..this is awkward for me cause most of everyone doesnt believe the pain is real, or they just think of one or two stones..not 1000’s of them..i was always bein put in hospital as a child startin around 6-7 yrs old..the doctors couldnt find my problem and my mom and teachers thought i was faking..at 14 yrs old i had my first raging attack..the doctor just labeled it as a bad uti..problems here and there always..at 18 during my first pregnacy, i couldnt get rid of uti’s..no antibiotics helped..i was told to stop drinking caffiene..funny thing cause i only drank water n orange juice..same thing with my second pregnacy at 20..at 21 i was diagnosed with MSK in both kidneys..infections and pain became more and more present..in 2007 i had my first case of my left kidney goin septic..i was in and out of er for 2 weeks..was bein treated with all kinds of antibiotics..nothing was workin..my last trip to er, i finally got a dr who knew about MSK..he done emrgency surgery..placed a stent in..no antibiotics seemed to help..i am 37 now and thru the years i have had 19 surgeries in a single year with numerous of others to go with them..several stents for 6-8 weeks at a time, scooping with baskets, liptho every time following weeks in hospital with high potent antibiotics..i have had congestive kidney failure 3 times together in each kidney and at this time now my 4th failure in my left kidney..doctors have called me a druggie wanting pain meds, to being a liar..furious it makes me..i dont take pills period..ive been told MSK doesnt hurt, to stop faking for attention..several techs doin sonograms have showed me my kidneys in shock of what they look like..then showed me theirs so i could see a normal kidney..looked nothing the same..i was told in 2010 that i had over 100 cysts with over 1000’s of stones in each cyst in each kidney..each cyst holds massive amounts of infection in them..when doin surgeries ,they have to be extremely careful not to rupture any cyst due to high amounts of infection..in 2014 i was told only an eighth of kidney was clear and functioning..i stated earlier i am now dealing with 4th time failure of left kidney..when the doctor went to do surgery, he couldnt remove the 7 and half mm stone blocking me..he could only place stent..the infection is overly rated high and the removal would have released a great amount more..bein placed in hospital, giving top quality antibiotics by iv and oral antibiotics tryin to get infection down for surgery..i was released with an appointment for 4 days after..at my appointment the doctor was hoping to blast and remove stone(s) and possibly stent..nothing could be done..the infection is growing off the charts with antibiotics 3 times a day..so i was scheduled for surgery today..need i say as i write this nothing could be done once more..so i go next week hoping surgery can be done..i was showed my exrays of my kidneys on tuesday and i have only hair lines running thru both that are clear..i have cyst in my main arteries running into my legs ,, my lower back is full of them,, i even have a few that formed in top of back of my head in 2013..they alll feel like beebees under my skin..i suffer from chronic severe pain daily,, from no energy,, nasua and vomiting almost every day..no appetite for most days..fever some days but not often like u would think..ive tried changing my diet..i dont drink any carbonated or caffienated drinks,, none with caramel in them either..i dont drink or eat red dyes..and follow the no’s and no-no’s for most of it..i drink alot of orange juice, pineapple juice, water and herbal decaffienated tea..i eat alot of actric foods and fruits..but nothing i do seems to be helping..i cant hold a job due to pain and sickness all the time..but cant get my disability due to doctors saying MSK isnt painful and we MSKers can live normal lives like people who dont have it..i have had urologist tell me they couldnt be my dr anymore for not knowing how to treat my kidneys and there was nothing further he could help me with..so how is that living normal like nonMSKers?? looking for relief somewhere and some how fast…cant take this crap anymore..drs get mad at me when im either allergic too or certian meds dont help..and they have to give me double amounts to control pain..i tell them to fix them and i wouldnt need the pain meds..not knowin what to do or where to turn…bein drivin over edge by MSK!!!!! does anybody know any information to help me…my kidneys are failing from MSK, (when drs say thats not possible) and the surgeries cant be done due to infection level that would only help them fail…im tired of hurting and being miserable!!! so unless ur doctors have MSK, they have no right to say it doesnt hurt..thats their opinion and it doesnt concern us patients..they need to stop bein judgemental on us cause they dont know our pain and try to help figure out what will help us….angry as hell at unknowing but judging doctors!!!!
I understand what everyone is saying. I was diagnosed 4 years while pregnant with my son. I have been hospitalized about 60 time for infection and stones. And I lived in South florida I had a amazing nephron. who was head nephron. at UM. He didn’t really believe chronic MSK pain but he believed in me. He referred me to a PM doctor who wanted me on pain patches at that time I was ready to live on pain meds. Fast forward 4 years and my condition has gotten worse two months I had lithotripsy by the biggest ahole urologist who ever met who probable could spell medullary sponge kidney let alone treat but I moved 4 hours from my good doctors so in this tiny county I told he was great. Great for what a trained monkey. I litho was not successful and he left a 6mm stone. I ended up in the ER from the pain and a horrible pylo infection he admitted and from all the hospital I have no veins so they decide to put a picc line in I stayed about week at first he and his partner wanted to do a cysto then decided no. so they pull th epic and I go home. while at home my arm swells up and turns purple my husbands quickly rushes me back to the er and its a DVT (blood) the picc caused a blood clot. So now another week in the hospital shot of blood thinners in my stomach and pills. Did my urologist come to see me nope. I am still in so much pain I go back after discharge and he is like oh so your not in pain right the stone is in ur kidney. he gave lame potassium citrate script. Now my PCP belives in my pain but says he isn’t the right person for long term pain management but will get me a referrel and send my med records so I guess I am finally gonna suck and go that route cause the pain is preventing from having a life.
Dr. Giovanni Gambaro at Columbus Hospital in Rome is organizing a study investigating the association between Medullary Sponge Kidney and pain. We would like to broadcast the link for the project’s website, where there is a questionnaire that participants will fill out and which we will use to determine whether they are suitable participants. Anyone with a diagnosis of MSK is welcome and encouraged to participate! We are trying to reach as many MSK patients as we can in order to elucidate this currently inexplicable link between pain and MSK.
Please find the questionnaire and information about the project at: https://www.msknetwork.it/
I have been scanning through the comments and saw a mention of a support group, I can’t seem to find a link anywhere though. I would love to join if anyone has information. I am in the beginning stages of being diagnosed. I already had two lithotripsy procedures done to clear multiple stones from both kidneys, but I am still in pain even though most stones and fragments have passed. I don’t have an official diagnosis yet (all x-rays have been non contrast for the purpose of finding the stones only. I know I’ll eventually need a contrast x-ray for an official diagnosis, but with this many stones, my Dr. is pretty confident that it’s MSK.)
I also have MSK and as of lately I have been in chronic pain. The doctors that I’ve seen keep telling me I shouldn’t be in pain, my stones (multiple in both kidneys) aren’t obstructing, blah, blah, blah. It’s comforting to know that others with MSK have had similar experiences, although I wish we could know more about our disease and ultimately find a better way to cope. I’m from northern MN and many of the doctors up here haven’t even heard of MSK and treat me like I’m just seeking medications. I have finally been referred to a nephrologist, and am looking forward to them (hopefully) having some knowledge of this disease.
Melissa, have you joined our support group? I am from MN too and know some people from Northern MN with great luck at the doctor’s.
Kayla I am also in MN and would love some names of dr’s who could help me.
Sorry I didn’t read before posting. Dilladid not dialysis. If we have to have so much pain I wish we could at least pass precious stones…
For crying out loud…predictive text kills me…that should be MSK!!
Hi everyone. I had had MAL for 27 years since I was 35.. My first stone was 12 x 12 mm and was so painful I thought I would die. Also, my dad had just passed away from kidney cancer so I always worry about that. I have had lithotripsy about 25 times, laser surgery, stone grabbing with the basket and it is all horribly painful. My doctor makes me keep dialysis (so) for the pain which helps but sometimes it makes my skin itch & then I have to take benedryl. My doctor says I will have this till I die. The stress & anxiety waiting for the next stone to fall is killing me :(:( It seems nothing helps. I was given 100mg of hydrochloride to keep the crystals from forming too big to pass but in April had to have a stone surgically removed as it crowned my ureter & the rest embedded in my tube. PAIN was so bad even after surgery I was out of work for 2 weeks. I have been to a nephologist & gone to Shands hospital with no results. You are all right…people who never experienced this pain have no idea how awful it is. WISH WE HAD A STONE FAIRY TO WAVE A WAND & make our stones disappear!!
LOL gotta love autocorrect! I do pray for a spongie stone fairy to take away my pain and stones everyday. Luckily this summer hasn’t been as bad for me I hope the same for you! Have you joined the MSK support group page Hun?
No. I signed the petition & donated but I’m not a Facebook person!
Where is the support group located? Please send me the link! I have had a rough summer in fact since my last surgery in April. It seems the older I get & the more stressed I am more stones fall. It is very depressing having so much pain .
I have passed over 200 stones since 2001. I am almost always in pain. I am going to talk to my urologist at my next appt June 18th about msk. I can’t hold a job and my husband and two oldest kids have to take care of me and the small kids a lot. I am in a lot of pain right now and Vicodin was not helping so my doctor who thankfully believes me has prescribed dilaudid. It helps sometimes. I can’t take this. It’s pure torture.
One thing that Kayla did not mention when discussing different types of medication for pain pain relief are the possible dangers of toradol. It can be life threatening to a person with kidney disease. Nsaid in general are not an ideal choice for anyone with chronic kidney disease as they are filtered through the kidneys. We have a mutual friend who suffered kidney failure after being administered toradol in the hospital. Feel free to join us at the Medullary Sponge Kidney Online Support Group on facebook. We all need support and research to battle this disease together.
Yes. This post was done a long time ago and prior to anyone’s adverse events. But if you are interested in learning about the dangers of Toradol and experiences, here is the link to the MSK Facebook group:https://www.facebook.com/groups/Spongelife/
Perhaps updating the post to reflect that would be a good idea – considering people can still come to read it, and if they don’t choose to read the comments, not see the correction. Just a thought.
C,
That is an excellent idea. Post should be updated to reflect new information. Most certainly when the information posted may not have been thoroughly researched and could cause harm. One patients experience could be completely different than another patient…but I agree better safe than sorry! Always great to have input. We spongies need to stick together and all thoughts are appreciated.
It’s important to note that this is MY PERSONAL experience and that is mentioned by Kidney Stoners at the top of the post. Everyone is different and reacts to medications differently. I have never had an issue with torodol myself at all but I have had issues with sulfa drugs! Someone may be completely opposite of that. This post is to show that you don’t need to be in pain, and to keep trying to find what personally works for you!
I was just in for my second surgery today to remove another stone due to this “condition” I have been complaining for awhile and they just kept treating me for random things and nothing helped. I finally seen an on call Dr that ordered an emergency ct where they found both kidneys filled with stones! I had one 4 jour surgery in which they only broke one up and I had to go back today for another. I have had a patent in for over a month and that’s almost worse then the stones. I have had trips to the er in massive pain. I am new to this all I have tried no diet change yet but I am on 8 different meds right now and would like to be on less so looking into all options. I am afraid to even ask for different pain meds because the one time I did I was told that that my pain is not bad enough! Um sorry but some days it feels like I am in labor! Kayla I am also a Minnesota girl and where I am its limited on the Dr for kidneys. Would you suggest looking outside my area?
Hi Amanda!! Where in MN are you? I’m in MPLS! Who do you see? I’m gonna give you my e-mail, and you can e-mail me if you want to ok? Kayblinky@gmail.com
Hi, I am located in Duluth so about 2.5 hours north of the cities. I sent you an email. Thanks so much
Today I was finally diagnosed with MSK. I too was told that my kidney stones shouldn’t be causing me pain, and the DR.s had no idea why I was in such pain. HA…. I am not crazy!! I am though, rather sick of hearing me say “my back hurts”. Well I will take the advice and print out all MSK symptoms and finally get some pain management started. I am a mother of four boys and my youngest has special needs and there are mornings where I literally can’t get out of bed. As glad as I am to have a diagnoses I am also rather sad to have to live with this pain forever. I will continue to pray every day for pain relief and one day a cure. God Bless all of you and keep your head up, there is always worse!
Whoever told you kidney stones are not painful is an idiot!
I was diagnosed 7 years ago with MSK. I have had many peocedures done to rid my kidney (right only) of stones. I have many stones i have passed on my own at home of all different sizes. On 3/8/13, i had an uretoscopy done (1 of many). Stent removed on 3/13 and was rushed to ER on 3/16 for emergency surgery. When stent was removed, 5 stones formed a bond and were lodged between my kidney and bladder. Because of this, my kidney was becoming septic. Surgery could not be completed because of this serious condition. On 3/22 had surgery (infection gone from high dose antibiotics) and feeling good! This might last me 6 months till next KUB (ultrasound). I just want to say being a MSK sufferer is physically, mentally and emotionally exhausting!!!!!
Hi from across the pond,
I have been suffering kidney problems for a long time, but was only diagnosed with MSK last month at 26 years old. I used to get a lot of “unexplained” flank pain as a child and my sister recalls that whenever we would play fight if she ever squeezed above my hips, below my ribs, i would yelp in pain. I had renal failure when i was about 20, treated with fluid drip and again about two years ago, was never established why i had gone into renal failure other than “probably dehydration”.
Flank pain has been getting worse over the last few years and the aching and stabbing is a daily thing, i’ve passed six lots of stones this year and the pain with that seems to get worse every time. The last lot (last month) I went to bed with a fluey feeling and a bruised sensation in my groin area, I awoke at about 3 am in horrendous pain, lower right abdominal, radiating to groin, i thought it was my appendix and knew i needed a doctor. I realised the pain was coming in waves so when it ebbed off a little I called the emergency doctor, he came out and called and ambulance, also suspecting appendicitis. I was admitted to the surgical assessment unit, dosed up on tramadol, diclofenic, paracetamol and morphine, blood tests confirmed it was not appendicitis.
After four nights in there, an ultrasound and a CT scan the consultant informs me of MSK, she says she wanted me to be admitted to the renal ward but they had said as long as my pain was under control and i could be seen by nephologist within a couple of weeks then i can go home (stones had passed by this point) so off i’m sent with a truck load of pain meds.
After a month I had still not received an appointment, i call nephology who say my referral was rejected and i need to speak to my GP about it. I call the GP he tells me basically it was rejected because there is nothing nephology can do about it, he says I just need my blood pressure done once a year along with a blood test, and if i get any infections to see him. That is how i have been left, I think i currently have a stone on the move as i have been real unwell for the last 4 days, bad stabbing and constant aches along with vomiting, i attended a nurse led clinic to check for infections, that was negative just blood in my urine, they said i got classic signs of a stone (like I didn’t already know!).
I’m not really sure what to do next, obviously its different healthcare here in the UK, but not sure if i should go back to my GP.. feel as though I just have to “get on with it” buts its really affecting my life and getting me down.
Thanks
PS I have just joined the facebook group.
I was diagnosed 5 or so years ago and have been treated horribly. I have had the same issue with doctors telling me I can’t be in pain if the stone is not moving. I would really like to find a doctor. If there is a trial I would greatly appreciate any info you might have.
As in a clinical trial? There is no research being done for MSK right now… sadly. Where do you live? Have you joined the Facebook group? We have a section on helpful doctors by area.