Are Blisters Part of My EDS?

Are Blisters Part of My EDS?
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Wow, did summer sure decide to turn on its furnace overnight here in Virginia. A day ago, it was in the mid-70s and perfect, and today it was 92 F and humid. Let me tell you, I am not a heat or summer person despite having lived most of my life in the South.

While I’d rather not have either temperature extreme, if I had to choose, I’d always choose cold. You can add more layers of clothing, keep moving, have a hot drink, and have a pile of hand warmers at the ready. When it’s hotter than 90 F with stifling humidity and often little or no breeze, it’s sticky, hot, and miserable.

I think part of the reason I don’t like the heat is that my skin tends to be sensitive, thanks to my Ehlers-Danlos syndrome (EDS). For as long as I can remember, trying to find shoes that fit has been incredibly difficult. Not only do I have the trademark EDS flat feet, but I also get blisters easily. I know immediately with most shoes I try on that they will give me blisters.

If I find a pair I think will be OK, I buy them and hope they actually stay comfortable. It’s common for me to ask my mom, who wears the same size, to break in a pair of shoes for me that I thought would be comfortable but that started to give me blisters. Sometimes it works, and other times my mom ends up with a new pair of shoes.

I found one brand of riding boots I can wear right out the box and they have never given me blisters. I’ve seen other boot companies put out new models and have tried a few on, but none have been comfortable. I spend a lot of time on my feet while living on a farm and tending to horses, so comfort is paramount. I can’t have my feet blistered and painful while I’m trying to get chores done! Thankfully, I’ve found a boot that works for me no matter how long I have them on.

While I know that fragile skin is a common EDS trait, I’m not sure if the tendency toward blisters is just me or more of a widespread issue among those who have EDS. It makes sense to me, but I’m not sure I’ve seen anything about it in research. I guess I’ve always just assumed it was another part of managing EDS.

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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 Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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5 comments

  1. Diane Smith says:

    I live in Virginia, too! It was cold in May, but, wait a minute, yes, they’ve turned on the furnace! Like you, I do much better in cold weather. In addition to EDS/dysautonomia, I have congestive heart failure, so I really, really don’t like hot weather. Also, like you, I have flat feet, and shoes are a problem, so I don’t wear them unless I really have to. When I had horses, I had the same problem with boots, although I had one pair that were fine. Loved the article – thanks!

    • Karen Del Vecchio says:

      Hi Diane! Thanks for reading. It’s nice to know that there are other horse-loving EDS people in VA! Hope you’re enjoying this past week’s respite from the heat as much as I am!

  2. Karissa England says:

    I’m in Maryland and I basically always have blisters between my toes. I also have hereditary bunions/hammer toes and hyperhidrosis so that doesn’t help. I’m still waiting on a geneticist to get me from hypermobility syndrome to EDS testing but every blog I visit is like “oh hey me since forever.”

  3. Christine Brzezowski says:

    I was diagnosed with EDH rather late in life. As a child I could not even wear shoes because my feet (and hands) blistered constantly. The problem is somewhat better but I still have trouble finding shoes. I love ECCO shoes; they are expensive but never give me blisters. I’m glad you have found some boots that work.

    • Karen Del Vecchio says:

      Hi, Christine! Thanks for taking the time to comment. It’s not something that I’ve really seen written about or researched, but anecdotally I’ve heard from several people who’ve said the same thing. I’ll have to check out ECCO shoes for sure! My current favorites are Skechers – they’re soft and comfortable, and even if they don’t last too long I can usually get them on sale inexpensively so I don’t mind so much.

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