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To the Doctors Treating Patients With MSK, Please Believe Our Pain

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I am writing not only for myself, but on the behalf of a couple of thousand patients from all over the world. That doesn’t sound like many affected compared to other diseases, and it’s true, we are scattered. Considering that our disease is rare and it’s taken several years for them to find our group and share our experiences, our numbers are actually a pretty big deal. We’ve been trying to raise awareness in the last several years, and we have continued to grow.

Most of the medical professionals I’ve come across haven’t heard of medullary sponge kidney (MSK), and that’s the story I get from other patients as well. Some have been accused of making it up. In my experience, when you mention MSK to doctors, they immediately think musculoskeletal. That isn’t what this is. Out of all the doctors I’ve seen over the years, only a few had heard of it. Some of them didn’t know exactly what it meant. If you look it up on PubMed, you’ll find articles written by some doctors and researchers that have studied it in the past.

The older information doesn’t truly reflect what we as patients are actually going through. While it lists symptoms, it doesn’t paint a picture of how truly horrible it is to live with on a daily basis. Some of the more recent publications acknowledge that we have pain, although there aren’t many because there seem to be very few doctors interested in MSK.

It’s true that some patients with MSK never have any symptoms or complications. However, that isn’t our reality despite what the literature says, and we shouldn’t be compared to those patients because we are individuals and our stories are completely different. We should be treated as individuals. This is about those of us who do have major issues. We are the symptomatic ones.

We are probably one of the most complicated patients that will ever walk through your door. We don’t want to be, this is just the hand we were dealt, and we are trying to find ways to manage our symptoms so we can live our lives. We would much rather be in the other category.

Our journey is difficult and we look to you for support, guidance, understanding, and most of all – help. A large majority of us aren’t getting that because a large majority of you don’t even know what our disease is and don’t understand how problematic it is. I know most of you hate Dr. Google, but when you don’t have any answers about our disease, it’s up to us to try to find them by researching online and talking to others that have it. We are the ones that have to live with it after all, so we need those answers.

We aren’t typical kidney stone patients, although we are currently treated as such because those are the only options available. Our side of the story hasn’t been studied in depth yet. If more medical professionals took an interest, we could work together to change that. We need to change it.

Our number one complaint and the most difficult thing for us to deal with is chronic pain, even without obstructing stones or stones in the process of passing. Our kidneys hurt every second of every day. That is a fact. They ache, we have sharp, stabbing pains, and we have kidney spasms. Some of the spasms aren’t too bad, but some are excruciating. The more active we are, the more it hurts and some of us urinate more blood than usual as a result. Other symptoms ramp up too. The vast majority of you refuse to accept we have pain with non-obstructing stones. The biggest hurdle we face is getting you to understand that we do. It’s real and it’s completely debilitating for many of us.

It takes over every aspect of our lives. It causes marriages, relationships, and friendships to collapse. It causes some to lose their jobs and homes. It affects our kids. It leaves a lot of us bedridden and without any hope at all. There are at least a couple thousand people all over the world that all complain of the same thing. We are not all making it up just to get pain medication. It is not all inside our heads, and we haven’t all just pulled a muscle. Our pain is real.

Kidney stones are in the “Top 10” most painful medical conditions for a reason. They are compared to childbirth for a reason. They are foreign objects in our kidneys that aren’t supposed to be there – most of us have hundreds of them embedded and they are sharp and jagged. They are slowly shredding our kidneys from the inside out and we will live with them for the rest of our lives.

We live with pain every day, so when we come to you and say our pain has gotten much worse, you need to understand that we know our bodies and we know when something is really wrong. Just because you can’t see it on imaging at the time, doesn’t mean it isn’t there and we are faking. Many of us have had nothing show up on imaging, only to pass stones or have an obstruction just a few hours or days later.

I’ve just touched on one topic of several that relates to us. Every one of us has stacks of medical files dating back for years that chronicle our history. The proof is there if you can just take the time to look at it. New interest and research would definitely help too. I believe there are better treatments out there somewhere; we just need professionals willing to listen to us. We need your help.

Originally published: August 22, 2016
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