When my EDS pain didn’t feel like pain — and now it does, and worse

My improvements have made me more aware of how much I hurt during a flare

Karen Del Vecchio avatar

by Karen Del Vecchio |

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“When you’re not used to hurting all the time anymore, it really sucks when you do, doesn’t it?” Those are the paraphrased words of my massage therapist last week, and while they perhaps weren’t the most elegantly phrased, they sure rang true to me.

After having a bizarre Ehlers-Danlos syndrome (EDS) pain flare recently, I scheduled a massage on a week when I wouldn’t normally have one, hoping to make some more progress. I typically have massages every other week like clockwork — massage is critical to my pain management — but sometimes when I’m feeling particularly bad, we’ll schedule an extra session. This off-week massage was one of those times.

As I lay on the table thinking about it, I realized how much sense my therapist had made. Since I wasn’t diagnosed until I was 22, I spent my whole life up until then in significant pain — except I didn’t realize it. As strange as it sounds to someone who hasn’t experienced it, how would you know you’re in that much pain if you didn’t also know what it feels like to not be in that much pain? It wasn’t until I started feeling better that I realized just how much pain I’d been in most of my life.

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After a Slip, I’m Recommitting to Self-care for My Pain

Feeling less pain is a great thing, no doubt about it! On the flip side, a severe pain flare can bother me more than it used to. When it was a given and simply a way of life, I easily relegated it to the back of my mind. Pain then was like an annoying and aching background noise. While I still have the capacity to push my pain into the background, my periods of feeling good have made it harder to ignore when it does flare up.

After years of examining patterns, noticing what helps me and what doesn’t, I try to avoid activities or movements I know are likely to trigger a flare. I don’t do anything that requires strength over my head as it may cause a subluxation of my shoulder. And weirdly, I don’t stir stiff cookie dough by hand as that’s guaranteed to flare up my shoulder — don’t ask me why, because I don’t know! Because I exercise caution in these and other tasks, I don’t often have severe pain anymore.

Sure, I still get sore. In fact, I’m sore most of the time, and sometimes I’d still characterize it as strong enough to be considered pain. Thankfully, however, that bone-weary, aching, exhausting pain is far less common than it used to be.

Now that I have a variety of tools in my toolbox to combat pain, I can also see the light at the end of the tunnel when it does come along. It absolutely does suck when pain flares up that way, but I also know that even though it may take days or even weeks to settle back down, depending on the episode, I can tackle it and get my pain levels back to manageable daily levels that I can control.

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 another 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.


Bill avatar


Yes. I'm sure people wonder why I never raise my arms over my head in my Aquafit class and in mat Pilates, but it is guaranteed to cause me significant shoulder and neck pain the following day. I usually tell my physical therapist that I can't do dead bugs because moving my arms above my head will cause pain the next day. But I was feeling good, had finally had relief from the constant neck and shoulder pain, so when the therapist's assistant told me to do them, i just did them. That was two days ago and I'm sitting here cursing myself. I knew better and now I'm in a pain flare when I had been so happy with my progress. It is a recurring cycle for me. I get to feeling well and then try too hard, and injure myself. I thought I was so fit 8 years ago and pushed myself on an elliptical. A supposedly easy exercise machine. It has now been 8 years of recovery step by step with frequent relapses where I think I will need a wheelchair and I am still walking with a cane. But I stay in therapy and keep getting slowly better again and again. The better you feel, the harder it is to bear the flare. This too shall pass.

jill Rodstein avatar

jill Rodstein

Pain, I have it somewhere everyday. Multiple cortisone injections are my only saving grace. The bursitis, tendonitis and subluxing joints have prevented me from doing all ny ADL's and exercise. I am 72 ans was not diagnosed until I was 66+/-. I am an Occupational Therapist which make me more aware of what I can and cannot do any more. Thanks for sharing your experiences. Jill


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