Moving Past the Unknown Causes of My EDS Pain and Injuries

Karen Del Vecchio avatar

by Karen Del Vecchio |

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The past few weeks have been a whirlwind. As part of my job as a college counselor, I’m working with high school seniors to help them make college decisions. As someone who lives and works on a farm, spring is, of course, when chores multiply. May is always exceptionally busy at school, so as a teacher, I will continue to have a lot to do over the next several weeks as the school year starts to wrap up.

I don’t feel like I’ve had more than a few minutes here and there to relax recently, but that’s not totally uncommon for me. I’m always busy and on my feet; as I’ve previously noted, I tend to manage my pain best with physical activity.

Why is any of this relevant? Because Ehlers-Danlos syndrome (EDS) is weird. I can wake up feeling pain in seemingly random places and for no obvious reason. Usually, the source of my pain is my back and badly damaged shoulder. Recently, though, my hip injury means I’ve had pain elsewhere, too. My peroneus muscles in both lower legs are sore. And while my feet rarely bother me, despite how severely flat they are (a common EDS symptom), in the past week or two they’ve been quite uncomfortable.

I can’t explain why I’ve been sore in these areas. When speaking with my massage therapist, Kim, she asked if I’d done several different activities or movements that commonly can cause pain in these spots. I’d done none of them. My best guess is that it’s still some type of compensatory pain, but I don’t truly know.

Being unable to pinpoint the cause of soreness or injury can be frustrating. How can I prevent issues if I don’t know what causes them?

I also have two painful bruises on the outside of my left knee and the back of my right arm that I have no recollection of receiving. Obviously, I must have hit something, but I have no idea what. With EDS, it can sometimes be so minor that it wouldn’t even register with me.

These types of situations used to really bother me, and while I can’t say I’ve completely moved past it, I try my best to be better about it. Getting frustrated doesn’t change anything. Working myself up mentally can actually make things worse, as increased stress and anxiety often result in increased pain levels.

Rather than ponder the cause endlessly or get upset because I don’t know what happened, I do my best to acknowledge the injury, recognize my feelings, and then pick up and move on.

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

Comments

Cynthia Willner avatar

Cynthia Willner

I do understand that not knowing why you hurt can reduce your stress of trying to figure it out but we try to figure it out so we won't do it again. Which we do because we forget pain once its gone. Something though that I must remember each year is not to walk on unstable grounds. We have an area along our fence line that in mid spring I'm out there spraying weeds. The make up of that area are large river rocks. Oh my goodness what that does to my feet, knees and back is unbelievable. I must spray the weeds but now am very careful walking on these rocks and now remember why I hurt like a mack truck ran over me.This year due to a very bad lawn aeration that left our lawn feeling like what climbing mt Everest must feel like I hurt the same as walking on the rocks. My point is this could have been an incident like this to flare your feet and hips. I agree don't stress over it but you will figure it out 3 weeks from now 😁. Remember unusual bruising is a given for eds people.

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Jane A Willoughby Woods avatar

Jane A Willoughby Woods

It's so important to be careful and nurture ourselves. I'm afraid to walk on uneven surfaces. It takes so little to dislocate my kneecaps and the recovery takes a year. Pain is chronic but some days, I wake up on edge. On those days, I give myself permission to hide and rest. People see me as hard working and capable and can't see how I could waste a day to rest. It's not always obvious that I have EDS. At 62, I've developed a new symptom: Tibia-Fibula instability. It's weird, unsolvable and painful. No answers from Doctors here in the U.S. except to walk in the slow lane. I'm learning how to do that.

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Pam Simmons avatar

Pam Simmons

Ms. Del Vecchio, I am reading your posts on the Ehlers-Danlos News site. I have been brought to tears twice because of the familiarity I have with the events, sensations and symptoms you (and the commentators) have described, and because of the frustration I have of trying to describe to doctors my symptoms (when they ask, I have a laundry list of such seemingly widespread and unconnected symptoms and their disinterest in my genetic profile I obtained is puzzling), or try to explain my experience to my employers, friends and family. I have become more isolated because I dont know what to say to anyone. I will keep reading because I want to learn how to communicate my needs and issues so that at some point my problem can be identified, acknowledged, and I can be allowed to take the time I need to heal during outbreaks, without the labels of "hysterical", "faker" ( is that what "maligning" means?) or "lazy".

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Karen Del Vecchio avatar

Karen Del Vecchio

Hi Pam. Life with EDS is certainly a challenge, and trying to explain what it's like to someone who's unfamiliar with it can be difficult. Unfortunately, much of what you describe is something that many other EDS patients deal with as well. I'm not sure if you're familiar with the Ehlers-Danlos Society, but they talk about the challenges that EDS patients may face on their Awareness Month page and efforts the group is undertaking to help combat them (May is EDS Awareness Month). I didn't know until recently that the Ehlers-Danlos Society also has a huge number of Community Resources, including a roster of affiliates and local support groups by state and region, online communities, virtual support groups, and many more. While I don't have any personal experience with them, they sound intriguing to maybe investigate to help foster connections with those who have similar experiences. Life with EDS isn't easy, but we're all in it together!

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