What is Hypermobility Spectrum Disorder?

Hypermobility Spectrum Disorder (HSDs) are a group of conditions related to joint hypermobility a.k.a. when your joints bend more than they should. This is often commonly referred to as being ‘double jointed’.

What are the symptoms of Hypermobility Spectrum Disorders?

Believe it or not, around 10 -15% of children have some degree of hypermobility or double-jointedness. If this doesn’t create any issues, it’s often referred to as Benign Joint Hypermobility Syndrome. However, for some people, there are symptoms associated with these loose joints. This can include more obvious symptoms such as joint pain, dislocations and frequent sprains and strains, but also symptoms which don’t seem clearly related to joint problems, such as digestive issues and thin, stretchy skin. This webpage, from the Ehlers Danlos Society, gives a detailed explanation of symptoms and classifications of Hypermobility Spectrum Disorders.

How do you diagnose Hypermobility Spectrum Disorders?

HSD is diagnosed through analysis of flexibility in several key joints, usually by a rheumatologist. A diagnosis of Hypermobility Spectrum Disorder should only be made when other possible illnesses, such as Ehlers Danlos Syndromes, have been excluded.

How do you treat Hypermobility Spectrum Disorders?

There is no ‘cure’ for HSD. Instead, patients may need to manage pain with painkillers, and try to take care of their joints through low-impact exercise and physiotherapy. For some people, braces or splints may also help to support joints.

I’ve also written about ideas for coping with pain when you can’t use painkillers.

How long have I had Hypermobility Spectrum Disorder?

All my life! As a child I had a lot of issues with joint pain, which my doctor put down to ‘growing pains’. When I was seventeen and had pretty much stopped growing, I went to see a rheumatologist. She diagnosed me with what was then called Hypermobility Syndrome. At the time, I only experienced pain in my knees, ankles and feet, but as I’ve grown older, I started getting pain in my hips (around 20 years old). Then in my mid-20s, my shoulders, elbows, and hands also started playing up. Wherever possible, I manage my pain with heat and gentle exercise. I’ve even written a blog post about managing pain without taking painkillers. But I take ibuprofen if it gets really bad!

What was my experience of pregnancy with Hypermobility Spectrum Disorder?

The main issue I had during my pregnancy was with my hips. From about week 12 – 13, they started partially dislocating at night. I was lying on my side (as is recommended in pregnancy), and the weight of my body was making the bottom hip joint slip out of alignment. It would wake me up with the pain. So, I would swap sides, and then I’d sleep for a while… before the other hip dislocated, and I woke up and had to swap again. By the end of the night, I would only get maybe half an hour on each side before the pain woke me up. Plus, my joints were so sore and stiff in the mornings. It was not fun. To be honest, months before the baby arrived, my body had me in training for the sleepless nights!

I did, however, find that pregnancy physiotherapy really helped. I saw a great NHS physio, who gave me exercises to strengthen the muscles around my hips. That made a massive difference to my pain levels, although it didn’t cure it completely. By the time I was 35 weeks pregnant, I actually felt better than I had at 25 weeks.

You can read more about my experience of pregnancy and hypermobility spectrum disorder in this Sickly Mama blog post!

What was my experience of giving birth and Hypermobility Spectrum Disorder?

My waters broke at 36 weeks and 5 days, which is technically premature – but only just (37 weeks is technically full term). Premature rupture of membranes (waters breaking, if you’re not a doctor) is a risk of hypermobility, so it’s possible that it was related.

I didn’t go into labour naturally, but was induced due to my waters breaking. I was put on the syntocinon drip to induce labour. My midwife told me to expect to progress by dilating about half a centimetre per hour. She said she would check on my dilation at about the four hour mark. So I was expecting it to take a long time before I actually gave birth!

Two hours later I was in massive amounts of pain, and they weren’t letting me have gas and air (because they said you had to be 4cm dilated first). I felt that I definitely couldn’t cope with another 12 hours or more of the contractions, so I asked for an epidural. The midwife requested one, but the anaesthetists were in theatre, so it wasn’t going to happen any time soon. Shortly afterwards, I got the very distinct feeling that my body was starting to push. I was pretty sure the baby was on its way! So, I told the midwife but she didn’t seem that bothered.

Fortunately, my husband then insisted that she check how dilated I was. She had a look, realised I was fully dilated and that I was indeed pushing – after just two hours. Rapid labour can be associated with hypermobility, so again it’s likely that this was related.

What advice do I have for other hypermobile mamas-to-be?

You can read more about my experience of birth and hypermobility spectrum disorder in this Sickly Mama blog post!

If you’re pregnant and have hypermobility or Hypermobile Ehlers Danlos Syndrome, I recommend flagging it early to the hospital, but being prepared to advocate for yourself in the delivery room. Obviously, that’s hard to do when you’re actually in labour yourself. So, make sure your birth partner knows about your condition and how it can affect birth, and ensure they’re confident to advocate for you. I dread to think how long I would have been pushing before they thought to check my dilation, if it hadn’t been for my husband.

I also highly recommend pregnancy physiotherapy, as early in the pregnancy as possible. A lot of hospitals have long waiting lists for physio, so try to get on the list as early as possible.

What’s it like being a parent with hypermobility?

It’s still early days for me as a parent with Hypermobility Spectrum Disorder. The main disadvantage so far is just the ability to treat pain when it arises. I normally try to avoid taking medication for my joint pain unless it’s really bad. Mostly, I like to manage it using heat – hot water bottles or baths especially. But you can’t put a hot water bottle on a sore hip when you have a baby in your lap, and my opportunities for taking baths have been significantly reduced! Plus even when it’s bad and I want to take painkillers, if Little Man has just fallen asleep in my lap then I’m not going to go moving him.

I’ve written more about my experiences as a new parent with hypermobility spectrum disorder in this blog post!