8 Metaphors That Explain the Different Types of Ehlers-Danlos Syndrome Pain

When you tell someone Ehlers-Danlos syndrome causes a lot of pain, you might feel like they’re nodding along but not really understanding the kind of pain you’re talking about. To someone without EDS or any chronic illnesses, their frame of reference for pain might be a mild ache or temporary discomfort — nothing like the various painful sensations you feel on a daily basis. And it can be really difficult finding the words to describe what it feels like so other people understand how much you’re really impacted by EDS, even if they can’t “see” it.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

To find out some ways to describe what EDS pain feels like, we asked our Mighty community to share the type of pain they experience, and explain what it’s like. If you’ve ever struggled to find a way to explain what you feel, perhaps you’ll want to share these descriptions. And perhaps you’ll relate to your fellow EDS warriors’ experiences.

Here’s what our Mighty community shared with us:

1. Electric Pain

“Electric. Whenever my SI joint is slipped forward/tilted to one side, it causes an ‘electric’ type feeling in my lower back, like it’s being electrocuted.” — Michelle D.

“Shocks that stab. Random lightning bolt feelings go down my spine into my arms and legs. They stop me for a few seconds.” — Shelby S.

“Neuropathy in my limbs that feels like electrical shocks and TV static ‘snow’ that is so loud that I can’t feel where my body is in space, causing me to trip or hurt myself.” — Chris W.

2. Throbbing Pain

“A deep, agonizing, throbbing ache. It settles into your bones and in your joints, and it just stays there. It pulses and burns in sync with your heartbeat. It’s absolutely agonizing, as I said before, and sometimes, my heavy duty pain meds don’t even touch it.” — Saylor A.

“I frequently get aches in my bones, not my muscles, my literal bones. It is an intense throbbing that won’t go away without lots of rest. No amount of physical therapy has been able to touch that type of pain.” — Caitlin A.

3. Stepping on Legos

“One of the many types I feel is when I dislocate a bone in my foot. It feels like I’ve stepped on a bunch of Legos.” — Meagan P.

4. Drill-Like Pain

“I hate the drill-boring-into-my-ankle that occurs as I am comfortably knitting. It causes me to scream as it is so out of the blue and can last seconds or minutes or however long it feels like. It might be a once off or it may repeat itself, or choose to come back into another joint. There is no way of telling and no way of preparing yourself.” — Mary W.

“Aching in all of my joints. It throbs so deep and feels like someone is drilling into every inch so slowly with a hot screwdriver. It’s always there. It moves around. Some days it’s only in one area, other days it’s so severe I can’t get out of bed.” — Toni K.

5. Bone-on-Bone Grinding

“When the bones in my hands slip out, they grind against the bones in my wrist and the tears come, no matter how hard I try to fight it. I yelp sometimes from the pain, but usually fight against it because most don’t believe it’s real.” — Sheri M.

“The little bones in my feet hurt all the time like bone rubbing on bone.” — Crystal A.

“My knees are bone-on-bone when I walk even in the braces that force my knees to move like they should. It hurts with every step I take. So on a scale of one to 10 like doctors ask, I go from a steady six to a 10 in seconds then lift my leg and it’s back to six. The pain wakes me up at night, sitting too long hurts, standing too long hurts and walking hurts. And what I mean by too long is this: I go stand in front of the sink to do my dishes, fill the sink and load the dishes, and I need to sit down, so approximately three minutes. I’m in pain so much that if I fractured something I don’t think I would know.” — Barbie K.

6. “Ripping Apart” Sensation

“Sometimes it feels like my hips are being ripped apart.” — Erin P.

“The pain in my glutes and SI area feels like my muscles are being torn from the bone. It is such a deep chronic pain.” — Kerri F.

“My latest pains have been in my hands and feet, where it feels like my joints are being pulled apart. It ends up radiating up my legs and arms, and nothing seems to help with it.” — Emyle P.

7. Red-Hot Burning

“Spine pain that feels like someone has shoved red hot spade-shaped blades between my vertebrae. It radiates down into my unstable SI joints and often up into my head with blinding migraines.” — Chris W.

“The feeling of rubber bands snapping as a joint pops out of place followed by a branding iron sensation.” — Ashley H.

“My ankle after repeated injury, now permanently swollen and aching and minute to minute when I walk will seize, give out or just hurt, like branding iron going through the joint. Other times of course it will be ‘fine,’ just aches and stiff.” — Louise M.

8. Tight, “Tin Man” Sensation

“Pain when I wake up, as if I was in a boxing match the previous night. Since I barely move when asleep, my joints sometimes get stuck in funky positions. They’re loose and get pushed and smushed, and then my muscles tighten up. The tightness is extremely painful. I need to get up and move or I’ll be like the Tin Man after it rains.”

 

To help others in the EDS community deal with pain, our Mighty readers have shared what they do to deal with their symptoms. Check out these 20 products people with EDS swear by, and these 32 hacks that make life with EDS easier.