Pain Management and MSK: A Patient’s Perspective

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

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26 Responses to Pain Management and MSK: A Patient’s Perspective

  1. 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/

  2. Lindsey says:

    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.)

  3. Melissa says:

    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.

  4. JENNIFER GREGORY says:

    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…

  5. JENNIFER GREGORY says:

    For crying out loud…predictive text kills me…that should be MSK!!

  6. JENNIFER GREGORY says:

    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!!

    • Kayla says:

      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?

      • Jennifer Gregory says:

        No. I signed the petition & donated but I’m not a Facebook person!

      • Jennifer Gregory says:

        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 .

  7. Vanessa says:

    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.

  8. Stephanie Hojnowski says:

    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.

    • Kayla says:

      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/

      • C says:

        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.

        • Stephanie says:

          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.

          • Kayla says:

            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!

  9. Amanda says:

    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?

  10. Susan says:

    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!

  11. Paula says:

    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!!!!!

  12. Lou says:

    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.

  13. Early says:

    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.

    • Kayla says:

      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.

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