Top 10 most challenging symptoms of hypermobility conditions

 In Adults, Chronic Illness, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pain Management

I recently did a survey of our online community about their biggest struggles relating to living with their hypermobility condition. These people have a variety of diagnoses including Generalised Hypermobility Spectrum Disorder, Hypermobile Ehlers-Danlos Syndrome, Classical Ehlers-Danlos Syndrome, Loeys-Dietz Syndrome and Marfan Syndrome.

   

These were their responses.

1. Fatigue

Fatigue is one of the more debilitating aspects of a hypermobility condition. For many people with multiple comorbidities (co-existing conditions), it’s impossible to tell what is causing the fatigue. Is it the hypermobility itself? Is it a symptom or by-product of dysautonomia? Is it from poor nutrition caused by gastroparesis? Fatigue can’t be explained simply; but we know it exists, both in people with co-morbidities and in those who just have hypermobility with no other associated conditions.

There is often muscle related fatigue, from muscles working overtime to stabilise joints and prevent them from dislocating or moving out of place. The muscles do the work of both the ligaments and the muscles, which is cause enough for fatigue. And there is also what I call “bigger picture fatigue” where it causes physical and mental tiredness and the feeling like you need to sleep for a month.

Fatigue can be debilitating and stop you from achieving goals, whether it’s getting out of bed and showering, or going to work and earning an income. Unfortunately, fatigue isn’t something you can talk yourself out of. It is the kind of fatigue that no amount of sleep seems to fix, and no amount of sugar or caffeine seems to hide.

2. Chronic Pain

The chronic pain that people experience with hypermobility is different to chronic back pain – the most commonly reported on, talked about and “identified with”. The chronic pain of hypermobility is often widespread, invading more than one limb and/or the torso. This pain is thought to be caused by central sensitisation. However, a significant contributing factor is also the recurrence of joint injuries, sometimes so close together that there was no chance of healing in between assaults on the soft tissues.

While a lot of the pain management strategies that apply to chronic back pain can also be used in chronic widespread pain, it’s far more complex and more difficult to treat. This type of pain can be life-interfering, if not severely debilitating and often disabling. It’s not uncommon to see young people using wheelchairs from their mid to late teens due to the pain they are experiencing.

3. Joint Instability

When we refer to joint instability, we are talking about the joints inability to maintain its integrity. Usually, the ligaments which hold joints together are lax (or loose) which means they aren’t holding the bones together tightly like they should be. This allows extra movement to occur between bones, and if loose enough or unsupported by muscles, those bones can fully or partially slip apart causing a subluxation or dislocation.

Some people with hypermobility will never have a subluxation or dislocation, but this doesn’t mean they’re not hypermobile, it doesn’t eliminate the chance of pain. Even a slight amount of movement where movement is not expected, can cause micro trauma (tears in ligaments, tendons, cartilage etc.) which can cause pain. The nature of joint instability is that these things occur over and over – it’s the repetitive movements that cause the damage (and pain).

4. Unpredictability

There are two lots of unpredictability here: joints being unpredictable (e.g. is it going to dislocate if I do XYZ?) and the overall unpredictability of the condition and it’s associated symptoms.

It’s extremely difficult to predict how your fatigue level will be in 2 days time. It’s almost impossible to know if you’re going to get a migraine on the 23rd of next month (unless your migraines are related to menstrual cycles). Will I be able to get out bed? Will my pain management techniques be enough? Will my meds work? What happens if?

There are lots of unknowns in hypermobility related conditions, and all we can do is try our very best to plan for multiple contingencies. People with hypermobility become master planners, strategists and amazing at covering their disappointment when things don’t work out.

There is a meme that floats around the chronic illness community that says something like “I’m not unreliable, my illness is”… and it’s the truth. We don’t choose to cancel plans, break commitments… our conditions force us to. And while we would change it if we could, we can’t do much about it except accept that unpredictability is part of the condition.

5. Headaches

It’s amazing that people with chronic, widespread pain can differentiate chronic pain from headaches and migraines, right? That’s because they are all different, and while they all cause pain, it’s a different kind of pain.

Headaches are those grumbly pains in your head, the ones that ache behind your eyes, or where your temples hurt. Sometimes it is pain in the back of the head and neck.

Often people with hypermobility live with reasonably constant headaches. I myself live with low-grade daily headaches which are usually caused by irritation of my neck or occipital nerve. These headaches are annoying, they seem ever-present, but they don’t always make me want to gouge out my eyeballs like migraines do. These headaches are the ones where your head isn’t clear and light, and a neck massage sounds like heaven but in reality will probably make you worse (because that tension in your neck is the muscles holding your spine together because they ligaments can’t do it themselves).

6. POTS-related symptoms

From dizziness when standing to passing out in the shower (or anywhere) and a multitude of symptoms in between, Postural Orthostatic Tachycardia Syndrome and it’s related symptoms are a real drag. Not only that, they can be quite dangerous for people who are prone to passing out while walking or standing.

The myriad of symptoms that go with POTS & dysautonomia can be extremely debilitating and are often the reason why people are unable to hold down a permanent job. It’s a very unpredictable condition, on top of an already unpredictable hypermobility condition, so it makes life very tough. My own POTS symptoms are extremely mild by comparison to a lot of others, so I can only base it on what I’ve learned from patients over the years… and that is, it can be really unpleasant to deal with.

7. Difficulty with exercising

You know how a lot of collagen-typical people dislike exercise? A good percentage of us collagen-atypical people would LOVE to be able to exercise, either how we used to, or how we see other people doing it. Going for a run, doing a spin class, yoga, going for a trek…. If jealousy could kill…. Exercising with hypermobility is either not possible, or a monumental task with equally gigantic post-exercise consequences.

Most of us can just about manage a few physiotherapy exercises, but anything more can be pushing the friendship. And not only that, even if today’s exercise session was pulled off injury-free, that doesn’t mean tomorrow we won’t wake up with the after effects. That could be joint pain, a dislocation, severe fatigue, post-exertional malaise. If only life were as simple as going for a jog to clear your head….

8. Migraines

We’ve talked about headaches already. Migraines are a whole other ball game. It takes a true migraine sufferer to know the difference between a bad headache and a migraine, and I personally am one of those people.

When I have a migraine, I want to be in the dark, in a quiet space. I usually want to be horizontal, although I’m not sure the positioning makes a whole lot of difference to the terrorising pain both inside my skull and out. I usually feel like gouging out my eye balls, asking someone to release the vice they have attached to my temples all the while trying not to move too much because not only does it hurt, it makes me want to vomit. When you’re in the grip of a migraine, the only thing you know for sure is that rescue medication and time are the only things in your arsenal.

Everything else is merely for comforting yourself – heat, gentle massage, ice packs, essential oils. What helps for one will make another worse, so it’s a personal game of working out what you want and need. For me, migraines usually rate as my highest on my pain scale. They’re usually the times where I say to my family if I had a means to end my pain, I would. That’s how bad they get. For someone who doesn’t normally complain about pain, that a bit statement.te Having lived in chronic pain for 23 years, having 12 orthopaedic surgeries and more procedures than I care to remember, that’s a big call, but it’s my truth.

9. Acute pain

What do we mean by acute pain? We mean recently caused; occurring for a recent reason. It’s often quite severe as something has just happened to our bodies and it is being flooded with all types of natural painkillers, antibodies, anti-inflammatories etc. Acute pain is usually proportionate to the injury. And the thing about acute pain is that it goes away when the healing is finished.

In a hypermobile body, this becomes quite complicated. What happens when you dislocated a patella? All of those things above, your body sends all of its resources for healing and protection to that area. And it starts to heal, the pain decreases, but four weeks after the initial injury you do it again. It hasn’t fully healed; the pain hadn’t fully gone away. But now you have the acute pain, the acute injury on top of the pre-existing injury from 4 weeks ago. And then because you’re so lucky in 10 weeks time, you dislocate your shoulder. So your body is still doing its healing thing with your dodgy patella, and now it’s going to send some of its resources to your shoulder to start healing it. Your body is now dealing with an acute shoulder injury, and what has now become a more chronic knee injury, as it’s been more than 12 weeks since you hurt it.

That’s a basic example of how we get the saying “acute on chronic pain”.

The hypermobile body is forever chasing its tail when it comes to healing old injuries, and dealing with the current day to day micro-tears and injuries that are happening just from living, moving and breathing. And that my friends, is why people who perform party-tricks with their hypermobile joints don’t get a lot of sympathy from me (once they’ve been educated in why it’s bad).

10. Brain fog

What’s brain fog you ask? Hang on what are we talking about? Was it bananas. Yes, bananas.

That is brain fog. It’s like baby-brain on steroids. Some days you can’t articulate words let alone construct full sentences. Other days you can speak OK-ish, but comprehension is a whole other matter. Blank stares, slow nods and “sorry, could you repeat that?” are all common.

It makes working, studying, remembering how to do things you usually do every day, extremely challenging, if not impossible. For some it’s caused by medications, for others it’s more fatigue driven, and for others again, it’s more a symptom of autonomic nervous system dysfunction (dysautonomia). It’s one of the frustrating and often cruel side effects of hypermobility conditions.

Funniest thing? Those with really bad brain fog won’t have made it this far in the article! Sorry!

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