21 People With Ehlers-Danlos Syndrome Describe What a 'Bad Pain Day' Really Looks Like

For many people with Ehlers-Danlos syndrome (EDS), chronic pain is one of the most predominant symptoms. But if a friend or loved one with EDS tells you they’re having a “bad pain day,” what exactly does that mean?

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

EDS is a rare connective tissue disease that can be broken down into 13 defined types, each of which manifests differently and involves its own unique set of symptoms. Since connective tissue is what most of the body uses to provide strength and elasticity, EDS can result in widespread structural issues that range in severity. Despite differences between the types, some of the most common EDS symptoms include joint hypermobility, skin hyperextensibility and tissue fragility.

Unfortunately, these symptoms can often cause pain for people with EDS. For example, joint hypermobility causes joints to be loose and unstable, which means they are prone to frequent dislocations and subluxations (partial dislocations). Dislocations and subluxations can be immensely painful, and a person with EDS may experience chronic joint pain outside of these events as well.

EDS pain is complex, and it affects everyone in unique ways. When one EDS-er says their pain is “bad,” their experience might actually look and feel very different from another EDS-er’s “bad pain day.” Neither experience is “better,” “worse” or more valid than the other’s – it’s just different.

Though every zebra may have varied definitions of what a “bad pain day” means to them, we wanted to better understand all the complexities and realities of EDS pain, and how it affects people. That’s why we asked our Mighty community to share what they might really mean when they say, “I’m having a bad pain day.” If any of the following experiences sound familiar, or you’re having a difficult pain day today, please know you’re not alone.

Here’s what our community shared with us:

1. ‘Nothing I‘m taking or doing is helping bring the pain down.’

“Since I’m usually in some degree of pain every day, a bad pain day is a day that makes it hard to function. The pain makes my brain cloudy, I can barely walk because my muscles and joints in my legs hurt so bad. My pelvic pain is probably flaring. Nothing I’m taking or doing is helping bring the pain down. I just have to rest and take it easy and hope it eases soon.” – Amelia H.

2. ‘I’m usually extremely worn out by noon.’

“For me, that usually means that I’m having random subluxations, lots of feeling of glass in my skin and possibly that my temperature intolerance is working overtime. I’m usually extremely worn out by noon.” – Mikki I.

3. ‘It feels like I never grew out of growing pains.’

“A bad pain day leaves me crawling out of my skin. The pain is so intense and all-consuming. At times, it feels like I never grew out of growing pains. It’s difficult to get comfortable in my skin.” – Morgan S.

4. ‘”Sorry for lashing out verbally.”‘

“‘Sorry for lashing out verbally and being impatient and irritable.’ I’m having a bad pain day.” – Emily C.

5. ‘I feel anxious because I don’t know how long this will last.’

“I’m having a bad pain day. I hate having to exclude myself from ‘life.’ The physical pain in every inch of my body inside and out is overwhelming me. I feel anxious because I don’t know how long this will last, or how long I can survive it. I am pushing myself to be ‘OK’ and trying to will my body to be kind to me. I’m depressed because I want so badly to be enjoying life, working or even making myself toast. But today, I cannot. Tomorrow I might not be able to either. I’m scared, and I need to know I’m ‘OK.’ My skin hurts, but I need you to soothe me. It hurts to think or speak, but I need you to talk with me. And although today is really bad, I need you not to give up on me so I don’t give up on myself.” – Chris H.

6. ‘Pain impacts all or nearly all of my activities.’

“A bad pain day for me is when my pain impacts all or nearly all of my activities. Hurts to stand, hurts to type, hurts to drive, hurts to hold things, and so on and so forth. I can still have high pain days without having a bad pain day.” – Kourteney K.

7. ‘It sometimes feels like my body is literally going to give out.’

“Even something as simple as getting up and walking into another room can be difficult. It sometimes feels like my body is literally going to give out.” – Ellen C.

8. ‘Even breathing hurts, and I can’t get comfortable at all.’

“Saying today is a ‘bad day’ means it’s a day when I pretty much had to drag myself out of bed and to get dressed and out the door for whatever thing I have to do that day, but it’s also a way for people around me to know when I need some space unless it’s been otherwise stated. It means that I don’t know how I’m upright and moving, but by God, I am. It means that even breathing hurts, and I can’t get comfortable at all.” – Saylor A.

9. ‘”Mommy is feeling extra creaky today.”‘

“‘Mommy is feeling extra creaky today.’ My kids know the drill, and are rock stars at helping if needed or simply giving me time to rest in bed. (They’re 9 1/2 and 14.)” – Meggie K.

10. ‘My bones feel like glass and my nerves like molten wires.’

“For me, with my EDS, it varies. Some bad pain days, the pain prevents me from concentrating. I’m constantly trying to find a position in my wheelchair that doesn’t hurt and if I’m going anywhere, I need my chair 100 percent of the time. And then there are the really bad days, where my bones feel like glass and my nerves like molten wires. Where the pain is so much I want to cry. These kinds of bad pain days, I can’t move or get out of bed. They’re completely debilitating.” – Kaori I.

11. ‘Everything hurts. Literally everything.’

“Everything hurts. Literally everything. Widespread, deep, intense pain that nothing eases.” – Reese L.

12. ‘I can feel every ligament and joint movement every time I do something.’

“I mean I can feel every ligament and joint movement every time I do something even if it’s just rolling over. I mean that my joints keep dislocating and causing pain, I mean I can barely move my hands because they are so stiff. I mean I just don’t feel well and I can’t do anything.” – Katelyn E.

13. ‘I am unable to distract myself from the pain.’

“I am unable to distract myself from the pain and the strategies and remedies I usually try to lower the pain (i.e. moving around, painkillers, orthosis, resting in bed) are not sufficient to get me back to my ‘pain normal.’” – Hanne M.L.

14. ‘It means so much more than just the physical pain.’

“When I say I’m having a bad pain day, it’s both the literal pain in my body and the pain of functioning that day. It means so much more than just the physical pain.” – Cressa H.

15. ‘It feels like being made of china and just the pressure of the atmosphere is going to cause me to shatter.’

“It feels like my joints are all grinding sand and my tendons are all inflamed. It feels like being made of china and just the pressure of the atmosphere is going to cause me to shatter.” – Brittney B.

16. ‘A bad pain day is asking my husband to please not touch me.’

“A bad pain day is asking my husband to please not touch me, not even put a blanket on it. My skin hurts so bad I can’t even take the weight.” – Gail W.

17. ‘It usually means my pain is 10/10.’

“When a bad pain day strikes it means I can no longer function. I can’t go to work, do daily activities, and I can barely get out of bed. Even taking my medication can be draining. It usually means my pain is 10/10.” – Hanna T.

18. ‘I’m stuck sitting or lying down.’

“Bad pain means not being able to do anything. [I’m] stuck sitting or lying down.” – Andrew P.

19. ‘My pain has become too severe to do normal daily activities.’

“For me, a bad pain day is when my pain level is higher than it chronically is. Maybe I’m recovering from a dislocation, maybe I overdid it the day before, maybe I have a headache. There are many reasons my pain level might go up. But on bad pain days, it means my pain has become too severe to do normal daily activities.” – Kylee P.

20. ‘I feel like I’ve been hit by a train.’

“A bad pain day for me means my symptoms have become too severe for me to function and push through. I often say I feel like I’ve been hit by a train on bad days. Every single inch of me is aching and incredibly sore.” – Hannah G.

21. ‘I’m going to need a lot of patience, help and grace.’

“When I say I’m having a bad pain day, that means literally every inch of me is throbbing and feels like I have the flu, and that I’m not going to be able to do much. But mostly, when I tell someone I’m having a bad pain day, I mean that I’m going to need a lot of patience, help and grace from them.” – Keaton E.B.

If you’re struggling with chronic pain from Ehlers-Danlos syndrome, know you’re not alone. Below, you’ll find several articles with tips and resources from fellow zebras about managing EDS pain. Our community is always here for you as well to provide support and encouragement.

What does a bad pain day with Ehlers-Danlos syndrome look like for you? Let us know in the comments below.

Ehlers-Danlos Syndrome