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.