Redefining the Pain Scale

Chronic pain patients across the board are constantly fighting the feeling of being misunderstood. We feel like friends, family, and doctors won’t understand us when we try and communicate our reality with chronic pain. Most of us don’t even try and communicate this very real and very difficult part of our lives.

When the time comes, and we have to attempt to explain to the outside world what is going on inside of our bodies, we are given poorly put together work sheets related to general pain. General pain, not chronic pain. Somehow the only tool we have been given to communicate our chronic pain to our medical care providers, doesn’t adequately represent us, specifically.

With that being said, I do believe it is time for a change. We need to separate chronic pain from the emergency room standard pain scale. Hopefully with enough backing we can do so! I have learned an efficient way to communicate to my doctors what is my chronic pain. My chronic pain scale looks something like this: We still keep a standard 1-10 scale but this time we split it in half. Pain levels 1-5 are functioning pain levels, meaning if you’re at a 5 you are in a significant amount of pain, but because we have chronic pain, we are still able to continue on through our routine. Anything above the 5 means that your pain is now interfering with how you function in your day to day life. If you are at a 10, this will tell the doctor that you are severely limited in what you are able to. I want us to be able to properly and efficiently communicate with our doctors. So many patients I have spoken with are frustrated with how vague the standard pain scale is in terms of chronic pain. I believe that by redefining the pain scale, we can better communicate where we are in our pain management and treatments and not feel so lost.

If you feel strongly about this issue, I would encourage you to share this article and even print it out to take with you to your doctors appointments. We may not be able to redefine the pain scale across the board, but we can help ourselves by at least starting out locally!

Why Chronic Pain is an Evil Necessity

I think that it’s safe to say that no one likes their chronic pain; if you do please track me down and explain it to me because I couldn’t imagine. Anyone who suffers from chronic pain most likely has some form of anxiety and/or depression. Chronic pain is no joke and it takes a serious toll on a person emotionally and physically. This kind of pain is a joy taker and a life stopper and it’s one of the toughest pills I’ve had to swallow. So why would I say that chronic pain, or even any pain at all, is necessary? People that don’t even suffer from chronic pain pray pain away. Chronic pain is amplified because it will trigger deep emotions. It will remind you to think about how you can’t physically function like you maybe once did, and remind you how one day you may never function as well as you do now. Chronic pain is a reminder. The very raw reality is that chronic pain is important for those of us with chronic illnesses. Imagine having Ehlers-Danlos Syndrome and not feeling pain at all. You wouldn’t know when to slow down to give your already sick body a break. We would literally run our limited bodies into the ground. When a healthy and normal person dislocates their shoulder, that is an abrupt signal to them to stop what they’re doing immediately before any further damage happens. That’s the exact same with people with chronic illnesses, it’s just that our bodies truly are limited in what we can physically do. Our bodies are constantly sending signals to us that we cannot push ourselves any further and that is why it is important for us to listen. We cannot listen to anyone outside of our own body because they simply do not feel what we feel, therefore cannot tell us what our own limits are. They cannot tell us what our own limits are. That doesn’t mean that they don’t try. I forever have people trying to think for me when in reality they just can’t. Even doctors can’t tell you what your own limits are when it comes to chronic pain. It’s all about learning to balance your physical capabilities and how far your willing to push your limits to accomplish tasks. Pain is a direct message to you straight from your own body, so don’t let anyone else try to interpret it for you.

Why the Zebra is Significant to EDS

For those who aren’t quite familiar with Ehlers-Danlos Syndrome, you might wonder why we use the zebra to represent us..

If you see a zebra-print ribbon or hear an EDS patient keep referring to their love for all things zebra, there is a very good reason for that. That is our beloved mascot! In 1940, Dr. Theodore Woodward said to his interns “When you hear hoof beats, think horses, not zebras.”, in other words, “Don’t go looking for the most far-fetched diagnosis out there.”. That term is still used by doctors to this day. In the medical field they have been trained to look for the most basic and “logical” diagnosis. Since Ehlers-Danlos Syndrome is a fairly new discovery (when I say new, I mean it is just now being mentioned to this upcoming generation of doctors in medical school) they consider it to be rare. Most EDS patients believe that rare and under-diagnosed are two completely different things. It is widely believed that Ehlers-Danlos Syndrome is not in fact rare, but underdiagnosed due to the wide variety of symptoms. Doctors look at hypermobility as an independent diagnosis and don’t consider the other signs and symptoms to come up with a deeper diagnosis. Other symptoms being chronic pain, brain fog, gastrointestinal issues, velvety smooth and stretchy skin, eye problems, easy bruising, anxiety, etc.

With that being said, we have taken to the zebra as our “mascot” because of the famous quote from Dr. Theodore Woodward. In my opinion, nothing could represent us better.

The Love-Hate Relationship a Person With Ehlers-Danlos Syndrome Has With Their Bed

When you have a chronic illness and you think of comfort, one of the first things you think of is most likely going to be your bed. Rest is very important when dealing with any illness, so why would there be a love-hate relationship with your own bed? It all depends on the illness!

The illness I am facing is Ehlers-Danlos Syndrome (EDS). EDS is a chronic condition that has to do with collagen. The collagen in my body is faulty and doesn’t do what it is supposed to and it wreaks havoc. Collagen is a protein found in connective tissue — it’s what holds our bodies together. Our tendons and ligaments do not hold our bodies together very well at all. Ehlers-Danlos patients are prone to chronic subluxations and dislocations and each patient is as different as a fingerprint. I struggle with full-shoulder, clavicle, rib, and hip dislocations and subluxations as well as craniocervical instability (CCI). The running joke in my family when it comes to the CCI is that my head isn’t screwed on straight. That is the best way I can explain CCI to someone who isn’t familiar with medical terminology. I use that joke to lighten the mood so people are most likely to hear me out.

Now that you understand a little better the basics of not only EDS, but my EDS, let me paint you a picture of sorts.

You’ve been going all day long and you have really pushed your body past its limits. You have been looking forward to the moment you can come home and crash and give yourself an actual break. You shower before bed and that takes a good bit of energy out of you, but it had to be done. You go to change into some comfy PJ’s and while you’re trying to put on the bottoms, your hip subluxes just enough for you to really lose your balance and you hit the ground. Bam, you dislocate your shoulder and hit a nerve. No big deal, I’m pretty much used to the pain by now so I just laugh it off as I head for bed.

I go to climb into my bed and as I’m trying to get comfortable, the weight of the blankets is almost too much for me to stand. Pulling myself into the sheets sends my hips and ribs into a panic. One hip subluxes and a couple of ribs dislocate just from the simple task of getting into bed. Now I’m struggling to breathe from the excruciating pain of dislocated ribs. I take a break from trying to get comfortable and just lay there and wait for my body to calm down.

Once everything has calmed down I begin again. I have a lot of pillows because I position them in ways where I’m less likely to dislocate something in my sleep. Usually by pulling one pillow between my legs and wrapping my arms around another pillow. The movement of simply dragging those pillows into position is yet a struggle. This time my shoulders are falling out of the socket and my clavicles are subluxing. I fight through it all even though it feels like I am made of jelly and my bones are moving freely as they wish throughout my body. I fight to get comfortable.

I lay there in what I assume is the position in which am going to fall asleep in, I realize this is not at all comfortable and I need to roll over. The clothes on my body are suffocating me with every move because my joints are too weak to fight the friction that is my pajamas against the sheets and comforter. Finally, I physically fight my way into a comfortable position and doze off for a couple of minutes, only to wake up to a pinched nerve. When your body relaxes, so do the muscles. When my muscles relaxed, my shoulder dislocated and a nerve got hit. Now my entire arm feels like it has been struck by lightning and is now on fire accompanied by a tingling sensation. I’m wide awake wrestling the sheets and clothes trying to get comfortable, yes, again.

This time I find that “sweet spot.” I am thanking the good Lord that the fight is over… and now I have to use the restroom. You have got to be kidding me. I fight the sheets off of me and I climb the mountain that is my pillows to get up and go to the bathroom. I am beyond exhausted at this point. I get back into bed, and you might as well reread everything you just read. This is my life when it comes to sleep. But you see, I rarely, if ever, truly get comfortable. Not just when it comes to sleep, I mean in general. My body is so off balance with the constant subluxations, I always feel like something isn’t quite right. That feeling is always accompanied with pain so that’s why you will find me wiggling and moving to try and put something back in place. It is a constant battle between mind and body.

My Ehlers-Danlos people are the real fighters.

2 Types of Pain Ehlers-Danlos Syndrome Causes on a Daily Basis

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Ehlers-Danlos Syndrome is widely known for the chronic dislocations and subluxations as well as chronic pain. People hear that first part, but unless you’re experiencing it firsthand, no one really thinks about the snowball of symptoms that comes with simple instability. When your tendons and ligaments aren’t doing their jobs, something has to in place of them. I mean, you’re still standing, right? Yes! I call that the “compensation pain.” It is chronic and I also refer to it as the baseline pain. Ehlers-Danlos people experience many different types of pain, and usually all at once.

Compensation pain is when your tendons and ligaments are like “shredded bubblegum” (no elasticity) so your muscles have to work way overtime just to hold your body together. Think about that pain when you’re holding something so heavy for a while and it gets uncomfortable so you want to put it down, but you can’t. You keep holding it waiting for the sweet relief of dropping the weight but you can’t just quit yet. You start shaking and it gets a little embarrassing because you look and feel weak. The weight of this item is really wearing you down and you’re really not sure how much more you can take.

Now imagine that being your own limbs. You don’t get to just put it down. Imagine having to hold your arms in their sockets or having to stand just right so your hips don’t give out. Imagine having to physically keep your head held up and what kind of pain it is on a daily basis to have to bear the weight of your own limbs because your tendons and ligaments are on some permanent vacation. That is what this is. I physically start shaking because of how hard my muscles have to work just for me to exist. My muscles stay in knots, and those knots have knots. Ehlers-Danlos patients are fighters.

Sometimes, we relax our muscles without thinking about it. When EDSers relax, we are almost guaranteed to dislocate something. It’s quite possibly one of the trickiest invisible illnesses out here. When my muscles are working to hold me together, I can function pretty normally for the most part. I’ll use small children for this example: We physically prepare ourselves to pick up a small kid and we have no problem whatsoever doing so because we subconsciously braced ourselves, physically. We have time to really tighten our muscles to lock everything into place before we go to pick that child up and all is well, no problems. Now, it’s a few minutes later and I’m on the phone with my back to the kid while he’s playing with his friends. My guards are down, shoulders are relaxed and I’m not prepared for any physical contact. The kid runs up to me and grabs my arm and pulls with all his might. Shoulder dislocates immediately. I didn’t have a chance. My muscles were not consciously prepared to protect what my tendons and ligaments should have been there to protect involuntarily. When my muscles relax, it leaves my joints and nerves vulnerable. It is a lose-lose.

When a nerve gets hit, that’s an incredible type of pain. With Ehlers-Danlos patients, it’s just a part of our everyday life. I watch people hit nerves and scream and cry. I can’t help but wonder what it’d look like for them to spend a day in a body with EDS. Nerve pain has different feelings and sometimes the feelings are jumbled all together at once. It can feel like you’re being electrocuted or like you’re being set on fire at first, but what gets me is the pins and needles sensation, or the muscle weakness where you feel like you may collapse when you’re not even standing. When it’s really bad, you experience a limb being temporarily paralyzed. There are mornings when when I wake up and I can no longer move my arm because I slept on a dislocated shoulder on accident and a nerve got pinched. It is the scariest feeling, waiting on your arm to function again.

Those two basic types of pain are the ones I experience on a daily basis. There are many different types of pain that we go through, but those two are the ones that I would have to say consume my thoughts daily. Ehlers-Danlos syndrome no doubt is a true invisible illness. When I fight, no one knows the first thing about what is going on in my body. Hopefully this gives a little more insight for those who could never understand, and gives reassurance to those that know very well about what I am doing my best to explain right here. We are EDS strong.

Introduction to Ehlers-Danlos Syndrome

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Hello Everyone!

I’d like to start my blog off with a quick explanation of what Ehlers-Danlos Syndrome is, so from here on out you will be more familiarized with what I will mostly be writing on. I am very grateful for the love and support I’ve been given from not only friends and family, but my EDS family as well. When I write, I’m not only speaking for myself. There is a whole community of people out there that are fighting alongside me.

 

Ehlers-Danlos Syndrome (EDS) is a genetic chronic illness that involves faulty collagen. Since the collagen in an Ehlers-Danlos patient is faulty, anything in the body that has to do with collagen is fair game for the illness. Collagen is the most abundant protein and it is what holds us together. Your bones, muscles, skin, tendons, and ligaments have collagen in them, as well as your corneas, intervertebral disks, blood vessels, gut, and teeth. Fun, right? Keep that in mind when speaking with an “EDSer” because I like to compare Ehlers-Danlos patients to finger prints, each one is different. Where my shoulders, ribs, clavicles, and hips are what I am currently struggling with, you may meet someone tomorrow that has EDS with a completely new set of signs and symptoms. Not only do you have to learn each one of us personally to truly understand our problems, but our issues can also worsen over time and we will most likely slowly progress downward. There are 3 basic type of Ehlers-Danlos Syndrome and they are Classical, Vascular, and Hypermobile. The classical and vascular can be confirmed by genetic testing however the hypermobility type cannot. Hypermobility type Ehlers-Danlos is diagnosed using what is called the Beighton Scale. Ehlers-Danlos patients have a wide range of really weird signs and symptoms which make it difficult for doctors to diagnose when they haven’t been trained to look for it. The biggest signs of EDS would be the chronic dislocations as well as subluxations, and a wide range of motion. The symptom list is very long, but for me, chronic pain is at the top.

I believe that this new generation of doctors, though, is learning about the illness and will know to at least look for the signs in their patients. That is a BIG deal and I believe we are coming a long way. There is no cure for us. Doctors can only treat the symptoms we face. Although I do also believe that there will one day be better treatment plans available which is why I fight every day.

I truly appreciate your interest in this illness. My main goal is to spread awareness of not only the illness, but the symptoms that you simply cannot see. You never know what someone is battling until you take time to know them.