Pain has been with me for most of my life. I used to think that this is just what life is. Of course, then I started asking others about their experiences and realized that it’s not normal for someone my age to feel this much pain.
It’s interesting to me, though, how many different kinds of pain there are. I’ve decided to document some of them here:
Subluxation pain -- pretty simple, when a joint is out of place, I feel at best a discomfort and at worst a sharp pain with throbbing/sore tissue around it
Aching joints -- I used to think this was from subluxation, but it’s actually from MCAS! Eating certain foods, being out in the sun too long, etc. can make all of my joints, and some muscles, ache and become tender.
Swelling pain -- this one I’ve only recently been able to pinpoint. I often get swelling in my extremities as part of EDS/POTS. If a part of my body gets too warm, it swells. For example, if I get cold and throw a snuggly blanket over my legs… within 15 minutes or so I’m likely to have achy/swollen/red legs. When this swelling occurs, the skin feels tight and super tender. My partner likes to “camel bite” people -- that’s when you sharply grab them above the knee. Unfortunately blood often pools right above my knee, causing me to yelp especially loudly when camel bitten.
Flu-like aches -- I’m guessing this is from MCAS, but who knows? You know when you have the flu and everything hurts? You feel like your insides are chilled and achy? And your skin is so tender that showering hurts? I’ve heard it described as feeling like you’ve been hit by a truck… Yeah, that happens to me at least once a month, often more. And pretty much anytime I get “real people sick” (you know, like a cold), I get these aches.
Neck and back pain -- my spine gets pretty loose at times, usually during hormonal changes. My muscles then overcompensate by becoming incredibly stiff. Think of the worst stiff neck you’ve had from sleeping at a weird angle, and then drag that out for a full week. Plus, horrible knots on both sides of my spine, all the way down my back.
Rib movement -- slightly different that other joint subluxations; when my ribs move, it causes sharp stabbing pains, as if someone has shoved a needle between my ribs. My PT says it’s not fully understood, but very common with EDS. It's probably nerves, already over-sensitized by all-too-mobile ribs, getting pinched. I’ve often startled people by yelping in pain for no apparent reason.
Scoliosis/rotated vertebrae -- I have minor rotoscoliosis in my lumbar spine, meaning that my bottom vertebrae are naturally rotated slightly clockwise. On top of this, vertebrae all the way up and down my spine can rotate in any direction at any given moment. Sometimes two will rotate in opposite directions. Obviously a full misalignment anywhere in my spine is extremely painful, but thankfully pretty rare for me. Whenever these joints are slightly off, though, it feels like a dull ache in that general area, punctuated by the feeling of sharp bones stabbing the insides of my back muscles when they move. Also, this often throws my SIJ slightly out, which creates a dull low-back pain plus weakness in my hips.
Hand pain -- my fingers get super tender, so accidentally hitting one, even lightly, can shoot pretty bad pain. I also get hand cramps a lot. I know it’s normal to get cramps after writing for long periods of time, but I get it after just a few sentences.
Spine pain -- yes, I already talked about my spine. There are two other types of pain I feel here. One is when I sit in a chair that doesn’t fully support my back. This stretches out the ligaments at “hang points” along my back, causing lasting tenderness between the vertebrae, as well as sharper pain in spots that my PT calls “kissing vertebrae.”
The other type of spine pain is still a mystery to me. I’ve wondered if it’s a form of central sensitization. I also know that the dura mater, the strongest membrane around the spinal column, is made of collagen. So maybe it’s the nerves in my spinal cord responding to all of my spinal mayhem, plus lack of protection from a poorly-constructed dura. Whatever the cause, it is a terrible burning sensation the full length of my spine. It feels inside of my vertebrae, rather than the other spine-related pains that feel like the ligaments around the vertebrae or muscle spasms as a result. It can also be accompanied by changes in mood, fatigue, and an unexplained full-body twitch that shoots down my neck and back. **Note: Jen Brea describes this burning spine sensation when her ME/CFS symptoms are flaring, so it seems I’m not alone, although the cause is still unknown.
TOS/nerve pain -- I likely have Thoracic Outlet Syndrome (TOS), which is when the nerves and vessels in your torso get pinched as they go into your arm through the thoracic outlet. This probably has something to do with my shoulders slipping in and out, since it’s much worse on my left side, and my left shoulder is out of its socket 90% of the time. This is a shooting pain from my shoulder to my fingers.
Numbness/tingling -- I often lose feeling in my extremities, especially at night when I’m trying to sleep. Numbness and tingling aren’t really pain, but they are often followed by pretty nasty pain, whether pins/needles or burning.
TMJ -- pretty straightforward, my jaw gets a little locked at times, and when I eat foods like bagels or steak (which, let’s face it, I haven’t had in forever), the muscles in my jaw hurt.
Eyes -- I have pretty bad dry eye which can escalate to abrasions on my corneas and burning or stabbing pains.
Headaches -- I’ve had so many different types of headaches, but I’ll lump them all together here.
Chest pain -- much better since getting my POTS under control! Often accompanied by difficulty breathing and tachycardia.
Ovarian cysts -- the cysts themselves just feel like short, stabbing pains in my ovaries. When they rupture, though, it can be pretty terrible. The first time it happened I literally jumped out of my chair (at my desk at work) and shouted pretty loudly, clutching my abdomen. For a few hours, it feels like periodic horrible stabbing pains and then aches reverberating through my pelvis and back. Then it throbs and aches for a day or two. It also hurts if I lay down with legs flat, which just adds another contributing factor to the challenge of sleeping.
Hemorrhoids -- thankfully my hemorrhoids only flare up on rare occasions. It can range from just an annoying twinge when I try to poop (followed by blood in my stool) to pretty nasty pain that makes me cry out and have difficulty getting my muscles to actually poop. Twice I’ve had it get so bad that I couldn’t sit, and once I couldn’t even stand, but had to lie down.
Intestinal pain -- this is definitely my least favorite. It’s usually just normal cramps, which aren't too bad. But when I’m having bad intestinal paresis or an MCAS flare, it feels like my insides are being shredded by shards of glass and then acid is poured through it all. It is rare for me to actually cry from pain, but almost all of those moments were intestinal pain. I’ve multiple times started to lose consciousness during bad gut flares, I think because the pain was so bad.
I know it can be hard to really wrap your head around what it would mean to have constant pain. But try to remember that many of us with chronic pain don’t even think anything of it when we experience one or two or three types of pain. When we’re speaking up about our pain, it’s because we’ve had four types all day and now a fifth and sixth have decided to join the party. So again, please remember that just because we’re smiling and choosing to join in the activities of the day doesn’t mean we are pain-free. We’re just being tough because that’s the only way to have a good life.
One last thought -- my mom once told me that pain is inevitable, but suffering is avoidable. I hated hearing that in the moment, but as an adult I think about it a lot. Often the difference, for me, between a good day and a terrible day is not the amount of pain, but rather how I respond to that pain. For more on this, click here.