Navigating Menopause with Hypermobility and Ehlers-Danlos Syndrome

Hypermobility Lifestyle

by Jeannie di Bon, December 22nd, 2023

Estimated reading time: 2 minutes

Through my movement therapy and regular movement practice, I no longer had hypermobility related pain and discomfort. But the perimenopause came with all sorts of triggers that appeared to be giving me new, uncomfortable symptoms and making older symptoms flare up again. Almost overnight, pain returned to my joints and muscles, headaches and migraines took on a whole new level and most distressing of all was experiencing repeated bladder infections and inflammation, that my GP was unable to help with. I was at a total loss physically and my mental health was taking a toll. But why did the menopause trigger my hypermobility symptoms?

Hormones and EDS

Both research and my clinical experience indicate hormones play a big role in the levels of pain experienced by people with Hypermobility and Hypermobile Ehlers Danlos Syndrome (1).

If you have hEDS/HSD you may experience symptoms including joint laxity, sprains, muscle stiffness, fatigue, SI joint pain, pelvic pain, and brain fog. I have found in my own experience and that of Navigating The Menopause support group in The Zebra Club this huge shift in hormones seems to make these symptoms worse.

According to the National Institute on Aging, menopause is defined as a point in time 12 month’s after a woman’s last menstrual cycle. The transition leading up to this time point, called perimenopause, often includes changes in monthly cycles, hot flashes, and other symptoms. During this time, the production of estrogen and progesterone varies greatly.

How Should We Adapt Our Exercise to Manage This Transition?

Here are my tips for exercising during this transition:

  1. Breathwork to calm the nervous system. Try this video.
  2. Mindful movements – slow and steady.
  3. Gentle weight bearing to help maintain bone density and help with osteoporosis.
  4. Training with bands and balls, but building up tolerance slowly.
  5. Balance work to help prevent injury.
  6. Stability work, but not through bracing or guarding the muscles.
  7. Taking time to rest and restore.

It is only recently that the menopause has been publicly spoken about in the media and in public amongst friends. When my mother went through it, it was never discussed. I was actually quite afraid of it.  But now there is a great deal more information available and support. I’ve found speaking to other women in the Menopause group in The Zebra Club really helpful. It was so validating to hear that other women had also experienced the same as me. We shared ideas, solutions and our experiences. It is so much easier when you don’t feel alone. Hypermobility and Ehlers-Danlos Syndrome can already make people feel isolated and not seen. The support network within The Zebra Club can really help when we need a little boost.

You can learn more about managing menopause in this Podcast episode I did with my friend Dinah Simon

Works Cited

  1. Hugon-Rodin et al (2016) Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type ehlers-danlos syndrome: a cohort study. Orphaned Journal of Rare Diseases.

4 Comments

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Tracy Chabala - 7th May 2024

I believe this is happening to me at 45! I had shoulder dislocations as a teen and reconstructive surgery, but in general, all was rather well until very recently. Now, my shoulders sublux during my sleep,, and I can feel them coming out. I wake up in pain! My hyperextended elbows never gave me trouble, until just this year. They hurt, they crack, they feel loose. Now I’m feeling nerve impingement, and both of my shoulders feel like they are going to fall out! So my T-rex arms are constant. I’ve always had excruciating bladder infections and bladder pain/burning even when I don’t have an infection – they almost diagnosed me with IC, but I had no idea this was related to my shoulders and elbows! My hips and the muscles around them are so tight yet I have plenty of mobility. Neck is cracking and popping out of nowhere. I need an evaluation I guess – I am not diagnosed, although I have POTS and skin issues and the things in the heels and my arms are long for my body. Anyhow, none of these HSD/hEDS symptoms were problem until – now. It’s also just this year I got my ASD diagnosis. Apparently, it’s not uncommon for women to get both diagnoses at this age!

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    Jeannie Di Bon - 7th May 2024

    Thank you for taking the time to share your personal experience. So glad this was helpful.

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A H - 5th May 2024

Thank you for this. It helps me feel more prepared for the future.