I had a dear, sweet friend come over last night and wash dishes for me. Then we sat and chatted for a bit, and I did a tarot reading for her just before she left. One thing she asked in an effort to learn more about EDS is, “What does it feel like?”, meaning what are the actual physical sensations I get.

It’s hard to answer that question. For starters, there’s so much going on. Because EDS affects almost all the tissues within my body, everything is affected. Because it does different things to different tissues, and because it can cause different kinds of damage to each different kind of tissue, there are different kinds of pain.

Really, the best way I can put it is that I am now an expert on pain. If you can describe what you’re feeling, I can probably give you a pretty reliable suggestion on what it is and what kind of investigating or treatment might be helpful. No, I don’t mean to say I’m any sort of authority figure or medical professional. I just have experienced so much pain – so many different kinds of pain – that I’ve been through it already. My lifetime of pain has afforded me a much stronger connection to all parts of my body, and I’m able to differentiate between the body systems by what the sensation actually is and how it compares to other sensations (for example, knowing whether it’s a kidney stone or a subluxed rib; knowing if chest pain is heart, lung, rib, esophagus, or spine-sourced).

I’ll try to break it down a bit:

  1. You know the pain that happens after a good workout? The few days after increased activity when everything is sore and achy? Or maybe when you have the flu, and everything just ACHES from the inside out? That’s my baseline. Even on my best days, I still feel like I have the flu. Everything cries out for softness, comfort, rest, and pampering. Because my joints are so weak, my muscles work double what everyone else’s do just to hold me together. Then there’s the regular exertion of movement on top of that. Add the fact that I’m not breaking down and absorbing nutrients properly, and my muscles are also insufficiently fueled. So, there’s this permanent exhausted ache that runs through my entire body 100% of the time.
  2. You know when it’s so cold outside that it actually hurts to the bone? When it feels like you have a million tiny ice picks chipping away at you? Well, my veins are too weak to keep my circulation up in my extremities. So, not only do I get random mystery bruises from spontaneous venous rupture, which hurt like any bruise does, but when the blood flow is limited, my limb goes cold and stiff and won’t heat up without a heating pad or hot bath. Until I can do either of those, it actually feels like crystals are forming inside my soft tissues, and they’re scratching, tearing, ripping, shredding – just destroying everything from the inside out.
  3. If you’ve ever dislocated any joint, you can imagine that pain and then apply it to almost every joint in my body. There are only a few that don’t shift out of place. If you’ve never dislocated anything, … Well, to be honest, I’ve grown pretty numb to that pain over the years. It’s happened enough that I’ve been desensitized. It’s just a normal thing for my hip, knee, ankle, fingers, wrists, etc. to not be totally in proper alignment. I do still suffer with the bigger shifts, though. There’s typically a tearing sensation with some burning when it first happens, and then it feels like a nasty bruise all the way deep inside the joint, radiating outward. You know when you bruise bad enough that there’s a knot and then you push on the knot and wish you’d just punched yourself in the face instead? It’s like that. Only it doesn’t stop until some time (days, sometimes weeks, sometimes it’s incessant) after you get the joint back in place.
  4. Sometimes, like when the slip causes pressure or irritation of surrounding nerves, there’s shooting, stabbing pain that feels like a metal spike being driven through whatever bone is there. This is a resonating pain. Like an internal tuning fork, there’s an electric buzz to this sensation. Ever take your hand off of something you’ve been holding for a bit that was vibrating the whole time – lawnmower, electric shaver, massager – and feel like your hand was still vibrating for a while after? It’s sort of like that, only less vibrate-y and more hum-y, and the hum is angry and shrill – sort of like brain freeze.
  5. On bad days, beyond the exhausted ache and the joint pains, I’m so far beyond fatigue that I feel like the meat is melting and ready to just fall right off my bones. Everything is so weak and feels like it weighs about ten times what it normally does. These are days all I can do is lay down and cry.
  6. I also have dysfunction in several abdominal organs causing severe cramping (both intestinal and menstrual), gas, indigestion/reflux, ulcers, nausea, diarrhea, constipation, spasms; and I often get ripping sensations in my gut, most likely from actual tearing caused by adhesions and blockages.
  7. And then there’s the head pain. I have a constant headache that starts at the back of my head where it meets my neck. This is mostly a pressure sensation, like someone put a hot stone inside my skull right at the top of my spine, and it’s trying to expand and cause my head to explode. Sometimes, this stone grows spikes – or, rather, it becomes a porcupine throwing quills. I pop my ears constantly to try and relieve pressure, though it doesn’t really do anything for longer than a few seconds. If I move wrong (which happens a lot – several times a day), I get a pressure surge that develops a bit like a tsunami: there’s this weird micro-moment right after I feel something slip that’s like a pullback of sorts – like that moment right before a baby starts wailing when you see it coming on their face – then, BAM, my pain score jumps right to 10, and there’s so much pressure surging in my head, I have to close my eyes tightly to keep them from popping out. Imagine brain freeze times ten with mobility, swimming around inside your skull until it settles throughout. There’s a burning, ringing, resonating sensation to this, too, and it will run down my spine. This is due to a blockage of cerebrospinal fluid flow throughout the brain and spinal cord. It also triggers vision trouble, ear pain (like an ear infection), swallowing difficulties, worsening language and sensory processing issues, vertigo, migraine, pulstatile tinnitus (ringing and hearing pulse in ears), sore throat and what feels like bleeding running down the back of my throat, … And, since this means there’s more smashing of my brain stem, I usually wind up tachycardic, which becomes painful in my chest, neck, and left shoulder – a stabby ache kind of pain. Sometimes when this happens, I lose control of my breathing, which is quite scary.
  8. Often, I can’t use certain parts because it feels like any pressure on the bones within will cause them to crumble to oblivion. It’s like they’re made of cracked porcelain. On those days, I say I’m “made of jello and rust today” because that’s exactly how it feels – like I have no solid matter in me at all, and everything is ready to collapse into a pile of debris.
  9. And then the tooth and gum pain, the eyes and sinus burning from sensitivity and dryness, the frustration, the mania or anxiety caused by overproduction of adrenaline, the utter loss of mental faculties (no thoughts, no movements because I can’t make the thoughts required to start movements, inability to process stimuli), the anger and depression, the loneliness, the boredom when I physically can’t do anything to entertain myself (even holding my phone is too painful sometimes) and have to just lay there, the shattered pride when I’ve shit myself or lost control of my legs and have to grab on to something hastily to keep from collapsing, the moments of utter defeat, kidney stones and frequent UTIs, chest tightness, seizures and muscle spasms, muscle knots and frequent microtears in tendons and ligaments, …
  10. A lot of it gets distorted, too. Not everywhere, but in some places, the sensation I get is completely inaccurate. Gentle touch feels like I’m being hit or smashed, what should feel like pressure feels like cold/hot/wet instead, what should be really painful just feels like pressure, that kind of thing.

I’m sure I’ve left things out. There is so much going on in my body it’s easy to forget things, but I think this paints a clear picture. My baseline pain score – meaning, the pain I’m in every second – doesn’t drop below a 3/10. Most days, I spend a lot of time in the 5-7/10 range, and I’d say at least half a dozen times a week, I’m incapacitated with a 9 or 10. When I tell you I’m stuck being horizontal, it’s because my pain has jumped beyond a 7, and being upright – even sitting – brings on a 10 in seconds.

Don’t let anyone tell you EDS is just being “double jointed”. It is quite literally the most pain-inducing condition. Not because it automatically causes pain – there are many zebras who live pain-free – but because of all the conditions it creates (or exacerbates) in addition: dislocations, tears, ruptures, prolapses, IBS, sensitivities and Mast Cell “allergies”, migraines and headaches, chiari and other spinal complications, organ dysfunction, kidney stones, endometriosis, interstitial cystitis, hernias, fistulas, neuropathies, …

This is why we zebras tend to take lots of meds. Me, I’m allergic to most prescription pain treatments, so I just tough it out and treat with heat and rest as best I can. Cannabis helps, but local law enforcement is doing everything they can to keep citizens from gaining access to it. It’s the only thing that helps, actually. Well, aside from surgical anesthetics, but I’m not about to start living on that hardcore stuff.

How do I manage? How have I not killed myself by now? How can I stay so positive, helpful, and supportive to others when I’m suffering so badly?

One second at a time. In each second, I choose to focus either on the suck or on the possibilities. What CAN I do? What options for improvement are available right now? A friend? Help from Hubby? A Xanax nap? I can wallow in it and bemoan everything, or I can just accept what the situation is and find something that will help me move past it. Mindfulness and meditation are key for me, as are heat, yoga, and massage. And braces. Lots of braces.


#itstheonlythingthathelps #legalizeit #decriminalizeit #medicalmarijuana