Let’s Talk About PAIN

Did you know that you don’t need a “pain management“ doctor exclusively to deal with your pain? I’ve been held hostage by pain most of my life (lupus), then my kidneys started to fail and the bone pain that comes with ESRD is yet another layer.

I’ve been literally-crying to my doctors (who thought I was drug seeking) about this pain that was becoming unbearable. Their solution? Send me to PT. I had a nurse coming to my house and I had ”pulmonary rehab” twice a week. I lasted 3 days. By then, my anemia made me too weak to do anything and the pain from the first 2 days almost crippled me. The entire time the nurse was patronizing me and telling me that he had similar issues. I kept doing it in the hopes that someone would SEE & REPORT back to my referring physician so I could get some pain management (massages, hydrotherapy, etc) …NOPE. They left me crippled and frustrated.

A Physiatrist

I then called my (rheumatologist) and BEGGED him to refer me to a doctor to manage the pain in my hips that I developed after doing PT for 3 days. (Now the funny part about this is the side that was hurting was the hip that was replaced!) He sent me for X-rays and I saw a PHYSIATRIST today (what?!). Apparently these are whole body docs who look at YOU (medical doctors who go into the specialty field of physical medicine & rehabilitation), Who knew?

Today I got up and the pain was so bad I hobbled the whole day and thought to myself “they’re going to think I’m being dramatic…I CAN’T go today, I’m in too much pain to even move…I have no walker/rolling thingy…How am I going to do THIS?” I went. I hobbled. People looked at me funny. I didn’t care. I was in pain.

The doctor walks in and his bedside manner was AMAZING! He asked where it hurt today. I showed him and he said “I know EXACTLY what you have, I saw it on the X-ray,“ and then proceeded to show me! He was kind. He offered hope.

I am scheduled for a shot (nerve block) next week and he prescribed me Tramadol in the interim. Now, I am reticent about the Tramadol as it’s NEVER worked on me. I asked him if it was a controlled substance, he said yes. I said I don’t like the idea of being “doped up” and usually use marijuana oils and hemp products for pain as I like to be mentally clear. He said he was prescribing one pill a day just to help me with pain and we’ll go from there.

I’m still iffy, but the pain is actually dominating my life right now and I will try anything. I don’t know how many of you have had a conversation about pain but it CAN go hand in hand with ESRD/dialysis. So now you have a new type of doc to look for in case you don’t have pain management already. I’ve had a pain management doc for years but it’s gotten BAD lately and I feel like they’re out of their depth with my multitude of illnesses.

I know this doesn’t seem “dialysis related” to some, but, try sitting in a VERY uncomfortable dialysis chair for hours WITH lower back, hip or spine pain without pain meds. On dialysis we are limited in what we can take because the usual advice is NSAIDS (Motrin, Aleve, etc.)—which we cannot take. What’s our solution now that the pain meds have been exploited to a point that NO DOCTOR is willing to prescribe them unless you’re on your deathbed?

Our quality of life becomes so affected that we are not good company anymore and barely leave our homes or get anything done. We need options. We need a real FOCUS on pain management from kidney advocates, programs, centers, because pain IS the number one reason people discontinue dialysis. It needs to stop being ignored and it needs to be addressed EVERY SINGLE MONTHLY check in with our team.

I am not ashamed to say I have had suicidal thoughts because of chronic pain (stomach) and sought help from my team. They wonderfully set me up with pain management, therapeutic services where I could talk about my issues, and changed my dialysis prescription accordingly. We are our best advocates and if you feel you are not being addressed you need to speak up. I felt “seen” today and am hopeful that a pain-free or at least pain-relieved future is ahead.