A personal experience of living with persistent long-term pain
I’m aware of pain every moment. A kind of pain that without medication is absolutely unbearable. A kind of pain that is hard to describe. It’s persistent, invasive and all-encompassing. It isn’t only muscle or joint pain, but feels like every cell in my body hurts and is crying out pain. Sometimes I feel like I’m on fire from the inside out.
Sometimes breathing feels like I have broken ribs and knives are sticking in my heart and lungs. This kind of pain scares me. Doctors believe it’s the tissue around my chest cavity that causes this particular pain, which they say is due to fibromyalgia.
I live with pain that the doctors say may very well continue the rest of my life. I’m only forty-six. I have severe fibromyalgia and Chronic Fatigue Syndrome. I also have other conditions that cause pain, but in comparison are easily managed.
I’ve lived with severe pain every day for about seven years. I’ve lived with intermittent pain from various conditions throughout my life, but fibromyalgia pain is the worst, both because of the intensity and chronicity.
I wake up every morning to pain, usually a moderate level, other times severe. I always have some level of pain. Sometimes the pain has been so severe that after taking enough pain medication to manage it, I’ve been left in a state of mental shock from the experience of intense widespread pain.
Sometimes I wake up crying. Other times it’s the first thing I do. I’ve cried myself to sleep plenty of nights. It’s not only the pain that I cry over, but also the ongoing battle to manage and accept it. I cry because pain intrudes upon every area of who I am and how I live my life. Most of the time crying helps. A good cry can be a positive experience.
Sometimes I have severe muscle spasms that take over my days, my nights and my life until they go away. Hurting that bad wears me out physically, mentally and emotionally. I can’t take muscle relaxers and narcotics don’t help spasms. Spasms are completely debilitating. They started a couple of years ago and each time they’ve been worse. With a neck spasm I can’t move my head and the pain is off the scales – emergency room pain.
Sometimes I think about what doesn’t hurt. My nose doesn’t usually hurt.
I don’t think I could live with the kind of pain I’ve experienced without medication. I once seriously thought that I would have to tell my family it was not humane to expect me to live anymore. I had decided during an excruciatingly painful camping trip that I could not take the kind of pain I was in and had been living with. I had sat up all night in my tent thinking about it.
I was with my two dogs on top of a beautiful mountain. I thought of my son and my mother. My family. I cried and sat there until sunrise, experiencing and feeling the enormous pain.
Fortunately, when I returned home I went to a doctor who began treating my pain. That was five years ago.
It may be that pain will drive you crazy after a while if you don’t have a way to treat it.
Pain and managing it is as much a part of me and my life as is anything and feels like it may be the most important part. I feel sure I’d go into shock and possibly have a heart-attack without pain medication. That scares me.
For the most part I’m able to manage pain with medication. I’m deeply grateful to have medication. I’m normally able to keep the level of pain around a three on a scale of one to ten when my medication is working well, which includes not being groggy. A level three or four is well-managed pain.
As a result of pain medication, I don’t have as many episodes as I used to of the kind of pain that feels like I can’t breathe or that I’ll have to go to the ER. Sometimes I miss a dose and fall asleep. That’s usually when I wake up with my entire body on fire and my chest cavity feeling like a mule kicked it.
I get scared of losing my doctor. I’m afraid I would get a new doctor who wouldn’t understand how severe my pain is, like five years ago when many doctors didn’t believe in fibromyalgia. They didn’t know what fibromyalgia was and would often blame it on psychological factors, such as stress or depression or they called it a, “trash-can diagnosis.”
I’ve tried nearly every non-narcotic pain reliever; including most of the antidepressants used to treat pain, along with the anti-seizure drugs Neurontin and Lyrica, but absolutely could not tolerate the side-effects. I eventually began treatment with a tried and true pain reliever, which treats the pain with relatively few side-effects.
Several months ago stress increased in my life and so did the pain. Any type of stress directly, and these days immediately, causes fibromyalgia pain to get worse.
I also went on another camping trip that physically set me back. I lifted logs to have a fire. Big heavy wonderful logs of Locust wood that I kept burning for four nights and five days right up ‘til the last few hours of packing to leave. I did plenty I shouldn’t have done. I hadn’t been camping since that one trip almost five years ago.
Being able to camp is something fibromyalgia has taken from me but evidently, I rebelled. It didn’t work out too well.
As a result of high levels of stress and the killer camping trip, I recently had to increase my dosage of pain medication. I thought the aftermath of pain from camping, which was almost four months ago would go away, but it never did.
Pain is depressing. Knowing that I might have to take pain medication for the rest of my life is scary. I get scared of getting old because I wonder how an older body will tolerate this pain or the side-effects of medications. I wonder how many times in my life I will have to increase the dose of pain medication. There are only so many times a person can do this in one lifetime. It’s all scary.
Personally one of the most difficult aspects of living with fibromyalgia pain is that it’s invisible. The same is true with medical fatigue. People will question and some will outright attack your character. Some people question your intelligence and your honesty, along with your motivation to seek out disability benefits when the pain and fatigue is severe.
Personally, it has been my blood relatives who have hurt me the most. I’m not sure what their intentions have been or what they gain from not believing that I have pain that requires treatment. They certainly don’t understand what Chronic Fatigue Syndrome entails.
I don’t know where the silver lining in the cloud is. I’d rather not have pain than to learn the lessons pain teaches, if that’s where the silver lining is.
Pain is humbling. It teaches that the human body is what it is –human.
Pain begs me to take better care of myself and to care more about myself.
I grew up hearing the saying, “What doesn’t kill you makes you stronger.” I wonder. I’m darn tired and worn out. I think I would be stronger if I hadn’t had ongoing experiences that felt like they might kill me.
I’m not too good at finding the silver lining in a cloud of pain.
I’m better at finding ways to cope. Little things that make me feel better like hanging out with my dogs. I love to rub the silky coat my young dog has. She’s the softest animal I’ve ever touched. She’s my tender heart.
My other dog is really my son’s dog but lives with me. He and I have always had a strong connection so we’re pretty close pals nowadays. I feel like his grandma. He’s a stoic fellow, but once in a while he’ll decide to give me one little kiss, just one and it’s always a surprise, like when I come home after having been out for a while.
My dogs give me joy and really do comfort my heart when all else seems lost or out of control. Dogs rule. They never argue and certainly never are they mean, at least mine aren’t. Dogs love you unconditionally, as long as you feed them, so that’s pretty cool with me.
Intentionally experiencing gratitude helps me ease anxiety or depression.
I think about the basic necessities in life –shelter, clothing, food, and sometimes little luxuries too. I think about things I’m grateful for because it actually does make a little difference in the way I feel. Some days it makes a huge difference.
As I write, the worst part of chronic pain is that it hurts today and I know it will tomorrow. The best part of having to live with chronic pain is that I have access to good medical care and medication to treat it.
Maybe one day I won’t have such severe pain. Maybe one day I won’t have fibromyalgia. Maybe I’ll discover new or different ways of treatment that works. One can hope because anything is possible. Well, most anything.