Chronic Pain Stinks – Lessons Learned from 18 months of Pain and Dysfunction

Chronic pain stinks.

Whether it’s fibromyalgia, IBS, migraines, plantar fasciitis or back pain, if you’ve experienced the unrelenting nature of chronic pain, you understand.

I’ve been dealing with 18 months of chronic back and hip pain for the first time in my life.  Some days I can’t walk. Some nights I can’t sleep. I had to give up golf. I’m on hiatus from the gym.  Some days I feel great and then…. BOOM, it’s back.  I’m losing my mind.  But I’m lucky.  Unlike many people with chronic pain, I have lots of resources. I’m a trainer.  I know a great group of PT’s, MD’s, strength coaches, massage therapists, chiropractors and acupuncturists. They are all here to help.  I have the financial means that allows me to try lots of things. And yet, I am still here, 18 months after my injury, trying to sort out the pieces.

My injury occurred from an extended period of sitting on vacation. Sitting at the beach. Sitting in a convertible. Sitting in a hotel room where there was no table and chairs. I stretched and exercised every day and, yet, I returned from vacation with some familiar back pain. After vacation, I went back to my regular workouts, but at a lower level, because I had been on vacation. Within 2 weeks, my “mild” back pain became severe hip pain. I could not walk stairs. I could not do any lower body exercises. I could not sleep.

Since my injury, I’m a walking target for comments and advice. People see me limping and say to me, “Wow, you’re a trainer, why did you get hurt?” “You’d think that wouldn’t happen?”

Really?  I’m a trainer, not Superman!!! And even Superman had kryptonite. My kryptonite is sitting. (PS- It’s yours too)

I also heard “Oh you must’ve been exercising too hard.” No…… this came from sitting. ( Kathy rolls eyes….thought bubble… “give me a little more credit than that”)

I’ve gotten more “great” advice from people who know absolutely nothing about me or my injury or even general back pain or hip injuries. #1 tip- I should start swimming! It’s the most common advice. Hmmmm… really? Swim how? Doggie paddle?  Back stroke? 200m butterfly?  Swim with pool noodles in a senior water aerobics class at the local Y?  What exactly are they wanting me to do? I guess maybe swimming is good….. except if you have extension based back pain or sacroiliac dysfunction, and, in that case, you will increase your pain and hurt yourself.

In the past 18 months, I was told that I was not exercising hard enough.  Or, I was exercising too hard. I needed more massage. I needed less massage.  I should stretch more. I should stretch less. It’s your diet. It’s your genetics. It’s all in your head. Don’t think about it.  Meditate. Follow my protocol X-Y-Z, t’s the only way to reduce pain. Take this pill. Get this shot. It’s your hip. It’s not your hip. It’s your back, It’s not your back. It’s arthritis. It’s your fascia. Don’t ever do X. Always do X.

It gets confusing…even when everyone means so well.

Over the last several months, I’ve spoken to many many people who have told me about their journey of pain, and it’s the same as mine. Between their stories and my own, I thought I’d share a few things that I have learned from my own journey, as well as the journeys of my friends and clients.

 Pain is a mind body experience.  How we experience pain and how we cope with pain is complex and individual.  Your individual experiences in life; how you think, how you approach life, what kind of trauma you have experienced, what kinds of emotions you store inside, all have an impact on your pain.  As Deepak Chopra explains: One common way you may experience this interaction of belief and physical sensations is when dealing with chronic pain. In essence, pain is a combination of the physical sensations you experience, the emotions you feel, and the meaning of the pain has for you. Emotional suffering, physical pain, and other sensations share similarities in their neural pathways. For example, feelings of anger or insecurity can disrupt the regular beating of the heart and the calm flow of the breath. This further activates the sympathetic nervous system in the same way that occurs when you are facing a threat, creating an even greater sense of unease and pain”. 

If you are having challenges coping with your pain, I highly suggest you seek counseling to add important tools to your “pain tolerance” toolbox. It’s important to get support and to know that your pain is not YOU. It is a small part of you, and you can find ways to make sure the pain does not take over your mental and spiritual health.

Western medicine is completely ill equipped to deal with chronic pain. (and especially if it is not 100% black and white).  Sure, if you fall and break your leg, they do a great job dealing with that kind of obvious issue.  But if your pain is chronic, or nuanced, or multi-faceted, my experience has been that they are unable to help with any critical “out of the box” thinking or solutions. And, since everyone is a specialist, no one is willing to do the hard work of differential diagnosis. No one overviews anything. Your PCP should do it, but often, they are just too busy. Unless you have a phenomenal PCP, You will be left alone for the most part to figure out this complicated puzzle. This leads me to my next point.

If the only tool you have is a hammer, everything looks like a nail. As I said above, there is no one medical professional who is really good at taking an overview approach. This is because doctors and other health care professionals see everything through their own rose colored glasses. Orthopedists want to do surgery or give you a cortisone shot. Neurologists see you as a big bundle of nerves. Physical therapists may advise exercise as a solution. It’s possible that none of these interventions are right FOR YOU.   Imaging studies like xrays and MRI’s rarely provide a simple answer, even though they are necessary. Don’t put too much hope in these exams.  Just because you have arthritis or a misplaced disc, does not mean that your pain is solely from that structural fault.  Soft tissue problems NOT seen on xrays or MRI’s can be horrifically painful. This is what happened to me. I have a little bit of arthritis everywhere but not pain everywhere. But no one could definitively tell me the cause of my pain. It was sooooo frustrating.

You should seriously consider alternative therapies.  Traditional medical practitioners are not taught enough about the complex nature of pain.  Most of their training is in medication and testing. This is one reason why we have an opiate epidemic right now.  While western medical tools MAY help you, they might not.  They didn’t help me.

Don’t give up. Keep looking for help and keep looking for answers.  What I found, that was best for me, was an integrative approach.  I found several PT’s and massage therapists that did holistic integration of soft tissue, structural and neuro-vascular issues. Osteopathy and bodywork gave me the best pain relief. Several clients and friends of mine had the same experience. There are some amazing bodyworkers out there. Find one. Commit to her forever.  Be engaged in preventing another pain incident, not just treating it.

You must be consistent and follow advice. I have many physical therapy friends, and what they all tell me, and what I see in my experience, is that people don’t follow the advice they are given by the PT. They go to PT, they feel great, they go home and think they are all set. They do not continue the exercises or other therapies that were recommended. This is ALL ON YOU.  Don’t say PT doesn’t work, if you don’t do the after care.  If your MD recommends a particular medicine or treatment, DO IT.  Be consistent.   This is the easy part. Following instructions. But, what is harder to do, is to change the things you do on a daily basis that are contributing to your pain.  For example, I can not sit on my couch and do work on my lap top anymore. I have to sit in a firm chair. Excessive driving causes my pain.  I had to limit my driving to decrease my pain. I added a lumbar support in all my chairs and seats, and use heat or ice to help with my pain. Is there anything you do on a daily basis that might be contributing to your current pain?

If the pain keeps coming back, time to step back and re-evaluate. If you are seeing a practitioner and the pain keeps coming back, you do not need to tolerate that. As I said above, DO be consistent. DON’T practitioner hop. But don’t tolerate therapies that aren’t working, merely because you like the therapist.  I am a big fan of tracking and logging your pain. I don’t mean to obsess about it. I mean keep a record of when pain strikes. Track how you sleep, what daily activities you engage in, whether you are experiencing any emotions or trauma, what medications you take for pain, and any other issues that may impact your pain.  I discovered through tracking that sitting and driving are my kryptonite. I discovered that my pain was rarely immediately after sitting or exercising, but was often delayed.  I discovered that long periods of sitting then set off my pain and then caused pain during exercise.   I discovered that ibuprofen, Feldine and gabapentin were not working, so I stopped taking them.

Follow your intuition, but be aware of doubt and insecurity around decision making. One of the biggest challenges with chronic pain is figuring out who to believe and who not to believe. This can hold us back from a timely diagnosis and treatment.  I was guilty of this myself. I went to an orthopedist, who told me a cortisone shot might work. But I wasn’t sure, so I went for a second opinion in Boston. (Second opinions are always a good idea!) She told me the opposite of the first orthopedist. Who to believe? It’s hard to know.  Are you willing to be in pain for a longer time while you make your decision? Then take your time. If pain is severe and debilitating, you don’t have as much leeway.  Take action. Pain disrupts the healthy function of the body. The longer you are in pain, the more dysfunction you will suffer. But DO listen to your inner voice. What makes sense for you, as an individual?

I am still on my journey. I am still seeking answers. And I don’t feel alone. There are so many people who have shared their pain journeys with me, and we are community.  And as I said previously, I am lucky. I have so many talented people helping me. Hope spring eternal. My biggest piece of advice- find a support team for yourself and be consistent with your healthy coping mechanisms.

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