People very often don’t understand what it’s like to live with Fibromyalgia, and other invisible chronic illnesses that cause chronic pain. They’ve experienced regular pain in their lives- pretty much everyone has, in some way- but, they’ve never had to deal with long-lasting pain. I actually attempted to look up the “official” labels for the different types of pain I’ve felt with this condition, but couldn’t find a label with an adequate description for all of them. I found technical descriptions, and sometimes patient descriptions, but nothing that was completely accurate.
Chronic pain is very different from your average pain. It can range from mild to severe, but even the mildest chronic pain can be harder to handle long-term, than an acute, or short-lived, severe pain. It’s relentless- stalking you incessantly until you’re screaming, crying, and desperate for relief- making it a serious struggle to do even the simplest of tasks. Some days, we celebrate just making it from our bed to the couch because it’s really that hard to do that day. The pain likely made it impossible to get a restful sleep; and don’t forget all the other symptoms that go along with these illnesses.
Extreme fatigue, nausea, cognitive issues, migraines, sensitivity to light, sound, smells, touch, and motion- the list is a long one. The pain isn’t just one type of pain, either. I guess that would be too easy. No, the pain likes to take on many forms. Many times, multiple forms at the same time. It’s a blast…..please read that with as much sarcasm as you can muster, because it’s definitely not fun in any way.
From feeling my own pain, and from interviews with others with Fibromyalgia, the following types of pain seem to be common with our condition:
Musculoskeletal pain: Feels like a deep, achey, way-beyond-the-flu type feeling that crawls through my body and sets in, sometimes for weeks, or months, at a time.
Nerve pain: I’ve wrote it before, and I must again- nerve pain is the devil. It’s torturous, and can make you feel insane because you’ll swear your body is on fire. It’s the worst stabbing, itching, and burning pain you can imagine. Like burning yourself on a red hot piece of metal, but unable to do ANYTHING to soothe it. I always stare at whatever body part it’s happening to, trying to convince myself I’m NOT on fire, or melting. It’s kind of a mind trick.
Pressure pain: My own label because I’ve yet to find an adequate “official” label. It can come in two different forms. One type can be felt all over my body, feeling like I’m being sat on by a semi-truck, then run over a few times. You feel weighted down, almost unable to move, like your body is being held down. The second kind pops up randomly, seemingly wherever it wants, feeling like you’ve suddenly been pierced by an arrow. It’s usually in a 2”-4” round spot, and pulses with a deep, but sharp, throbbing pain for anywhere from 4 seconds to 20 minutes. It fades away after a bit, leaving a weird ache behind.
Joint pain: Many people are already familiar with this type of pain, either from general aging, or arthritis. It can feel like a sharp jab through your joint, or a deep ache in the bone of the joint.
Inflammation: I include this because it rarely doesn’t bring pain with it. It can make you swell, causing another type of pressure, making you feel like your body will explode. Many times, medication doesn’t seem to help, and stiffness sets in, making it difficult to walk without feeling like a stick figure. Also read Pet scan shows fibro patients have inflammation in brain.
Surgical procedures/medical treatment pain: Oh yes, the very things that are supposed to be helping us, can very often add to our pain, making things even more exhausting. There are so many different pains this can cause, it’s impossible to describe them all, but I’ll call it “healing pain.”
TMJ/jaw/face pain: It seems like we have this in common, too. Whether it’s caused by bad teeth from the conditions themselves, or medications to treat them; or inflammation in the connective tissues in the jaw, we can have sharp pain in our face. It can be excruciating, taking every bit of self-control I have not to scream. All those pains constantly bombarding us, along with that long list of other symptoms, make simple daily activities significantly harder for us than the average person.
In an attempt to really help explain the differences, I’ve compiled a list of a few normal activities that pretty much everyone has to do at some point. After each activity, I’ve described how it can feel to those of us with chronic pain.
- 1. Just taking a shower– can feel like we just ran a couple of miles at the end of a very long day, then jumped in the shower. We’re exhausted and barely able to move when it’s over.
- 2. Stepping outside in weather above 75°– instantly feels like we’ve actually spent 8 hours doing hard labor in 100°+ weather. It’s nearly impossible to stay conscious because the heat drains every ounce of energy in seconds.
- 3. When the temperature is under 40°– instantly feels like we’ve been plunged, naked, into an ice bath. The pain is sharp, severe, and to the bone.
- 4. After going out to a club or concert, NO drinking– feels like we just went on a bender during Spring Break and have just woken up on the first sober day.
- 5. Getting a bruise– feels like being shot by an arrow.
- 6. Two hours into the day– can feel like we’ve already been up for three days straight.
- 7. Doing an hours worth of light yard work– usually feels like we were digging holes for 8 hours.
- 8. Riding in a vehicle– feels like being in a demolition derby race that takes place on a boat, in the middle of a storm.
- 9. Attending a sports event as a spectator– feels like we played the game ourselves- and it was a contact sport.
- 10. Doing a few dishes– feels like you’ve just worked an 8 hour shift as a dish washer.
At least one of those things should give you an idea of the difference in the energy it takes, and pain it causes, for us to do things compared to the average person. I can actually remember a time when these things were much easier for me, too. Before. Before dealing with all the pain, symptoms, exhaustion, emotional struggles, and relationship issues caused by having an invisible chronic illness. Before it got impossible to live a normal, active life.
We don’t choose for it to be harder for us to make our bodies do what others can easily accomplish, so try to understand when we’re slower, or can’t go out, or cook dinner, or whatever else may be expected of us. For my fellow chronic pain sufferers- it is hard. It is real, and not at all just in your head. It’s exhausting, and tries to break us, but we’re stronger. We fight every day. We have value, strength, courage, and compassion. Keep fighting. Find something to give yourself purpose if you are feeling worthless. A career does not determine your value, just like your condition does not define you unless you allow it.