EDS/JHS

All my life I’ve had joint problems, but nobody ever thought anything of it.

When I say joint problems I mean I’ve always had hyperextending arms, elbows, wrists, thumbs and to a certain extent, my knees also hyperextend, but I was always told that was normal and having hyper mobile joints is just what some of us have… but what if it wasn’t normal? and it was actually caused by a genetic default? Well, that must be crazy!!
*sighs*

This blog post is going out to those people who are in the position of having continuous extreme joint pain/joints clicking and cracking, down to bruising and scarring easily, even extreme fatigue and stretchy skin. You aren’t the only one, and no, you aren’t crazy.

The first time I ever really had any issues with my joints was at age 13 when my elbow suddenly cracked very loudly as I attempted a flip on my trampoline.
For days and days after the event it felt loose, unstable, painful and I had extreme sickness. Now, most people would say ‘oh she must have broken it’, but that wasn’t the case. After a total of 5 visits to A+E they finally did a scan and said it looked fractured, to have another scan weeks later saying it wasn’t. Confused and upset, I took painkillers for the foreseeable future and learned how to deal with a clicking elbow. I guess you could deal with a clicking elbow when you get used to it, but then over the coming years when it spreads to your shoulder, your wrist, your opposite arm, every finger to the point that over-use of your feet somedays can lead to feeling like you have sprained them, you can’t deal with that, but I managed to for years and years like most people with my conditions, and continued to look completely normal.

The issue for most is the confusion between EDS and Hypermobility Joint Syndrome (which is being thought to be either, a) the same thing or b) a lesser of the Joint Hypermobility type of EDS).
The other issues are the lack of medical experts within the field, and the lack of knowledge and sympathy from those around us. The trouble with Ehlers-Danlos syndrome is it affects the structure of our connective tissue through-out our bodies. So obviously it will result in abnormally fragile and hyper-extensible tissues throughout our bodies, which can create a wide range of problems. Our connective tissue and collagen keeps our joints, bones everything together in our skelton, so when yours is faulty, you’ll feel it.

Usually a rheumatologist can diagnosed JHS/EDS with the Brighton Scale.

Ehlers-Danlos syndrome (EDS) is a genetic disorder in which the structure of connective tissue is abnormal due to a gene mutation. This results in abnormally fragile and hyper-extensible tissues throughout the body which can lead to a range of multi-systemic symptoms; the effect on the body is widespread and not limited to one body system.
I have PoTs as well as these issues, along with Fibromyalgia, nervous system issues yet undiagnosed and ME/CFS. There is also a weird link between PoTs and EDS that I will touch on when i have more information from my research i’m doing at the moment.

Although EDS is a genetic disorder, it can also be found in someone who has zero family history of hyper mobile joints or EDS, which is very strange as EDS is a mutation of genes affecting the structure of our connective tissue.

If you are worried about yourself, or someone close to you having ‘loose, unstable joints’ and continuous dislocations, seek GP advice and suggest to see a Rheumatologist. I would have still been struggling a year on without seeing a rheumatologist.

Good luck and be strong!!

Jessica.

Advertisements

2 thoughts on “EDS/JHS

  1. Hi Jess
    My son is 10 and was diagnosed last Summer. It was only through my due diligence and research in trying to find an answer did I find EDS and after dozens of doctors and “specialists” did I finally find someone who could see what was going on with him. It is so hard to be in this condition hands and have no one listen when you try to find answers. Stay Zebra Strong Jess and I hope we can talk again soon!!!

    Liked by 1 person

    1. Thankyou so much for your reply!! I’m waiting to see a rheumatologist next week with my mum to discuss EDS and how it can be helped and distinguished from JHS. I’m looking forward to getting some answers and some help! Thankyou again and hopefully get to speak again! My email is miss-jessica-foy@hotmail.co.uk if you ever want to chat 🙂 it’s hard finding people who get things like we do 🙂

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s