Living with Joint Hypermobility Syndrome with Autonomic Dysfunction has been quite a challenge. Okay, “Dysfunction of what?!”… I agree, those words are just too heavy to understand unless you understand medical terminology. I’ll get into that.
My last update was when I crossed 18 months and now it’s over 22. I don’t wish to bore you with the 18 month journey again, so you can read that right here, but what I do wish to tell you is what this condition is.
Before I get into some insights, I wish to share something really quick.
A couple of weeks ago, a friend of mine expressed the desire to be unwell because it would allow him to be in bed. After a longish discussion, I told him how dumb that was, but he didn’t relent and believed life would feel easier.
The reason to share this is, other than the sheer insensitivity of the conversation, I also wish to highlight one point. When a patient is forced to rest in bed, especially through an invisible illness, it appears easy to the outside world. So, please – you may see the person as somewhat normal, laugh normally, talk normally, but that’s because you meet them on good days.
Let’s just be kinder.
With that bit of venting out of the way, I’ll now get on to the syndrome.
What is Joint Hypermobility Syndrome with Autonomic Dysfunction?
Joint Hypermobility occurs when collagen in the body is weak, making the joints loose and stretchy. This weakened collagen cannot be cured.
There are lots of us out there who have hyper mobile joints but that doesn’t mean you have the syndrome. It’s only when the hyper mobility starts to cause pain and/or swelling or even dislocations that it needs to be looked at.
Now on to Autonomic Dysfunction which is also known as Dysautonomia is when there is a disorder of the autonomic nervous system.
A type of Dysautonomia is Postural Trachycardia Syndrome – to make life easier, it’s called PoTS!
PoTS is when there is an increase in heart rate and light-headedness. Chronic fatigue usually accompanies this as does a change in blood pressure upon a postural change.
Phew! With that out of the way…
What is the future of someone living with Joint Hypermobility Syndrome?
I haven’t really gone into much detail of what the condition is, simply because that can be easily Googled. But, what’s important is, that this syndrome doesn’t come with a cure but you have to find a way to manage.
You have to manage the pain, the shortness of breath, the palpitations, the light-headedness, the chronic fatigue and the other multitude of symptoms.
Yes, this is what I go through. I have fallen with the sudden onset of dizziness, I’ve had spontaneous breathing issues and days when standing in one place brings me to tears as the pain decides to take over my legs and the soles of my feet.
But, as I continue to learn about the condition and its triggers, I have understood that one must find ways to create their balance through medication, physiotherapy and quite frankly, one can’t do well if their will power isn’t strengthened.
One mustn’t be ashamed to use physical aids. I use walking sticks and as much as I hate it, on bad days, I also use a wheelchair within a hospital because the walks are pretty long.
It’s important to use every bit of support that is available for this condition, otherwise trust me, spending extra time in bed isn’t fun.
All the sufferers of Joint Hypermobility Syndrome and PoTS that I have come across are mentally strong. They find their balance through the above, but every patient is unique because the joints affected and the level of autonomic dysfunctions may vary.
Joint Hypermobility in India
I have a brilliant doctor taking care of me. She’s sensitive and highly understanding. But even she concedes that the syndrome is not widely known here. Her efforts to gain more information and find ways to help me are commendable.
I hope, somehow I can help create more awareness of this issue in India because it’s not so well known which is why it can take a very long time to be diagnosed with it – it took 18 months for me.
If you are living with Joint Hypermobility Syndrome and wish to share what has and hasn’t worked for you in your own journey then please do comment – it would be great to hear from you.