The Truth About Living With Chronic Pain

Chronic pain is something people hear about all the time. It's all over the news, the internet and basically anywhere you look. But what is it like to actually be the one to live with chronic pain? Do you ever think about the actual person behind that title? Do you ever think about how a person who lives with chronic pain has changed? Sure you hear about all the opioid issues, and overdoses. But did you know that the majority of people who live with chronic pain don’t overdose or abuse the system? Did you know that many people who live with chronic pain suffer EVERY SINGLE day because they can’t get a doctor to listen to them and actually prescribe meds to treat their pain? I am going to go out on a limb and say you probably haven't.

Let me just share some statistics with you . According to a study done by Boston University there are 1.5 BILLION people worldwide who suffer with chronic pain. That equals out to be about ONE in FIVE people who live with chronic pain. If you break it down there are ONE HUNDRED MILLION Americans who suffer from chronic pain. That being said 20% of those living with chronic pain have had to go on disability, solely because the daily pain is so much and so hard to deal with that the pain actually prevents them from being able to work. Okay so now you know how many people live with chronic pain but what kind of pain are we talking about? 27% of all chronic pain is reported as low back pain, 15% migraine headaches, 15% neck pain and 4% facial pain. Chronic pain has led to 36 MILLION Americans to miss work annually. However, these statistics do not usually include the millions who live with chronic pain causing conditions like Lupus, Fibromyalgia, Endometriosis, Rheumatoid Arthritis, or the hundreds of other conditions that cause severe pain.

If you were to take a minute to think about those closest to you, and think about who if any have told you about the pain they live with daily. Go ahead…...think about it. Can you think of anyone? Based on statistics alone, chances are pretty high that you have at least one person in your immediate family, or circle of friends, who lives with chronic pain, and you probably don’t know. But why? Why wouldn’t you know? Well, that's a pretty simple answer. Due to all that's been talked about on the news and all over the internet many people are simply afraid to share that they live with chronic pain. Or even embarrassed or scared to share because they don’t want to be looked down upon. Or they are afraid that people will automatically assume that they are drug seeking. Especially if they take some form of pain medication for said pain.

Since the 2018 report from the CDC came out discussing the number of deaths due to misuse of opioids,  life has gotten harder for many who live with chronic pain. I wish I had statistics to share but sadly no one is publishing them. Dr. Kline is one of the few who has published pieces with statistics. In 2018 he posted a piece that contained a list of suicides due to forced tapers/forced stopping of Opioids, and he names FORTY ONE individuals who chose to end their life because they couldn’t deal with the pain. This should not be happening. Doctors should not be allowed to completely cut people off the pain medicine that has kept them functioning for many years. Sadly, one of the main reasons that you may not be seeing the stats regarding these suicides is due to the fact that many coroners code the deaths as a death due to overdose since they had opioids in their system. When the real reason they died is because their doctors got scared and decided that they would force their patients to taper their pain medication down to a level that left them in excruciating pain, or they just refused to prescribe them at all. That left thousands of patients to try to live with pain that no one should be forced to live with. Sadly, they felt their only way to deal with the pain would be to end their life.

I have showed you how many people suffer from chronic pain, and what kinds of pain people deal with. But what does it actually look like to live with chronic pain? I’ll be completely honest it SUCKS. There isn’t a day when something doesn’t hurt. It is at the point of crying uncle everyday? No. But that doesn’t mean it's easy to live with. Between the migraines, Endometriosis, Lupus, Fibro,  IBS, Bertolotti's Syndrome, and Interstitial Cystitis, and the ones I won’t bore you with, literally there isn’t a day that goes by that I don’t hurt. I, like many others who live with some kind of chronic pain, wake up in the morning and start assessing the pain. I start moving my extremities and moving around to see what hurts. Because there is always something causing me pain. I know you are probably thinking, “Ya, so you have a little pain, what's the big deal?” I can’t tell you the number of times I’ve heard someone say to me that “everyone hurts” and I should just buck up and just deal with the pain. But chronic pain is different. It’s not like spraining an ankle and having it hurt for a few days and then the pain is gone. This is pain that I will live with EVERYDAY for the REST of my life.

The honest truth is that at least three days (and sometimes more) out of most weeks, the pain I wake up in the morning with is unbearable. There is no amount of yoga, stretching or deep breathing that will make this pain go away. If a Tylenol or Ibuprofen would take the pain away you can bet I would start there. But it's VERY RARE that something over the counter will help.if it’s available for treatment of pain over the counter you can bet I’ve tried it. From every kind of spray, lotion or rub, patches or medication, I’ve literally tried it all.

Of the days I am dealing with pain, many, I can’t even due the normal day to day things. Getting dressed, putting on makeup, brushing my hair and teeth all HURT. Yes, the really do hurt. They hurt and because of that everything takes SO much longer. Things I used to be able to do all in fail swoop, now take me three or four times as long because I have to rest in between steps due to the pain and the fatigue that comes with the pain. When every joint and muscle is inflamed from a flare with Lupus &/or Fibromyalgia, every single activity you want to do hurt like you will never believe. On those days I usually end up staying in bed or my big lounge chair and working from my phone. What’s really hard are the days and nights on end when you can’t sleep because there is absolutely no position that is comfortable. When that happens not only are you dealing with a bad pain and flare up, but the fact that you are exhausted and running on no sleep. Which in turn makes the pain worse. So it’s like a vicious cycle that you can’t seem to end.

I wish I could give you a good example of what it feels like to live in my body on a high pain day. I guess the best I can do is this. Take a moment and remember a time when you had the flu. remember how bad you felt when your ENTIRE body ached. Do you remember? Okay, now think about the pain you experience after the first couple workouts you do after you’ve been away from the gym for awhile. Like the days that you are so sore that you can hardly walk, laugh, or lift your arms because they hurt from that workout. Do you remember that pain? Okay now combine the two. And add in pain in just about every joint you have. That's how I feel a LOT. Unlike you with the flu, or after a workout, I don’t know that it will go away in a day or so, and there is nothing I can do to make the pain any better. Just some food for thought.

Trust me, I’ve tried that has been suggested over the years. I’ve tried every NSAID you can imagine. I've tried acupuncture, massage, chiropractic adjustments, cupping, supplements and all the ice and heating pads you can imagine. Some gave me temporary relief. But most of the time I got no relief. I really wish I had because I enjoyed some of these options, but due to the cost it wasn’t a possibility to continue trying things that were not giving me any more than a few hours to maybe a day of relief. I hate to admit it, because I can only imagine the hate I will get for this, but one of the only things I have found that actually helps my pain in any long term way is medication. Whether it be the IUD for endo (not exactly a med I guess), or the medications I am prescribed for my joint and muscle pain, the pain and spasms in my bladder, or the medications I take to help with my severe migraines. Do I use these medications every day? ABSOLUTELY NOT. All the medications I am prescribed are just used when needed. Some days I need them, and some I don’t.

But honestly, the worst part of living with chronic pain is the way you are treated by many medical professional. Many providers see a chronic pain condition or see that you have some kind of pain medication on your profile, and they often assume you are seeking care for your pain to just get meds. And God forbid you ever end up in the ER. The ER is the absolute worst place anyone with any condition that causes chronic pain. Those providers simply do not understand those conditions and automatically just assume that you are drug seeking. Sadly, I have experienced that more than once as I have had to go to the ER to be admitted for severe intractable migraines on multiple occasions. Sadly, on many of those visits they basically accused me of drug seeking. In one visit I was told by THREE different providers that I would not be getting any kind of narcotics for my headaches. Note the fact that I had never mentioned any kind of narcotic as what I wanted. In fact they are the last thing I want for headache, but they didn’t take the time to get to know me or ask me what had worked in the past. They just assumed. I will attach the blog here that details that awful hospital trip if you want to read it. I will also be linking Amy’s recent battle for medication.

In closing, I don’t share any of this so you feel sorry for me. I share this simply because it needs to shared. There are so many assumptions around chronic pain, and walls that need to be broken down. Most people don’t understand what it is truly like to live with a condition that causes life changing chronic pain. I’m not pointing fingers or anything of that nature. I will be honest, in my 10 years of working as an RN, I didn’t have a good understanding of what living with chronic pain was like for my patients. Sure, I had patients over the years who said they had chronic pain but I didn’t have a clue what that really meant. I didn’t understand that it can be LIFE CHANGING. I had no idea that pain can interfere in literally every single aspect of your life, but it can, and often does.  I had no idea that chronic pain could come between people and break up relationships, but it can. These are things I have learned from living with multiple chronic pain causing conditions. Life is just different when every aspect of your life is determined by how much pain you are in. It’s sad, but true. Life changes after chronic pain begins.

With Love,

Amber