Joint Hypermobility Confusion - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
2,308 members751 posts

Joint Hypermobility Confusion

natsylvie
natsylvie
6 Replies

Hello!

So I'll start off saying that I don't have EDS (at least not that I know of), so my apologies if this seems completely irrelevant. However, I have joint hypermobility, and with that comes pain in specific joints, muscle pain/tightness, and parts of my body frequently being "out of place" (i.e. pelvic rotations, knees popping, sacrum rotated, things not being aligned, etc.) Due to this, I've also shied away from sports because often after I do simple athletic activities, such as running, playing tennis, etc. I feel pretty bad pain in parts of my body and have a really hard time functioning/focusing later on. I am still in high school and didn't understand why I was being bothered with mild to intermediate back and joint pain until years and years of seeing doctors later, I realized that it may be due to my hypermobility. Yes, unfortunately, my family wasted lots of money on my doctors' appointments. However, doctors don't seem to think of joint hypermobility as a painful medical problem per se, and the only place I can find information is on websites online. I understand that joint hypermobility is not the same as EDS in medical terms and that I am not at all going through the same struggles as someone that has EDS. However, I am really confused about if joint hypermobility is a condition and I feel that this is where I can get the clearest answer since hypermobility is a symptom of EDS.

I'm saying all of this to pretty much ask, is joint hypermobility even count as a diagnosis for a condition? Is joint hypermobility even a condition? Can I tell my PE teachers that I have joint hypermobility as a valid reason to get out of activities that I know will cause me pain? I'm just trying to clear it up, as I've been trying to figure this out for years, and doctors haven't been very helpful.

Thank you, and sorry this is longer than I meant it to be. I sincerely hope this didn't come out as dramatic or anything else other than confused. :).

Edit: also sorry if there are already posts like mine out there, I am new to this site and haven't completely searched out the website for answers.

6 Replies
oldestnewest
honeybug

Hi natsylvie 😊🌿🌸🦋

I do have hypermobile EDS. However I was told in grade school that I just had extra loose joints. Went into Ballet and Tap dancing; was told too clumsy couldn’t control movements, which is what dance is all about. Since my mother was embarrassed that I was dismissed especially after buying all the outfits and accessories for these planned long term activities it wasn’t explained to my 5 year old mind why the classes suddenly stopped. It broke my heart needless to say.

Followed by decades of joint pain reacting to so many things and being so flexible ( bending thumbs back to touch the sides of my forearms plus my lower limbs could turn out sideways while on my knees as a shocking trick to viewers.

Little did I know then that with every overextension of my loose joints and all the injuries sustained from my very active life that they would lead to early osteoarthritis. My thumbs are bone on bone and I need an invasive surgery to make New thumb joints now. I’ve been taking steroid injections to ease the inflammation and postpone the surgery events as long as possible.

When we have pain that’s our central nervous system telling us something is wrong.

We must heed our pain signals to protect ourselves against repeated injuries that lead to irreversible damage and then long term suffering.

If we start relying on pain meds that leads to addiction and your generation is well versed on the perils of that.

When you are active you must wear braces splints or protective tapings/support wraps that keep the hypermobile joints from over extending. You don’t want torn ligaments tendons etc this young in life...well at any age!!’

If you haven’t already been seen by a top Rheumatologist and let yourself be put through a thorough evaluation and blood tests etc. you need to do this

Then get an excuse letter from gym activities for your home chart you need to start keeping ASAP to document dates times symptoms from whatever triggers them. What home treatments you’ve tried such as heat ice elevation inflammation reducers like acetaminophen or aspirin ibuprofen. Be sure to document your responses to treatment. Also whether the weather plays a part in your symptoms.

Thus will be your proof to any future doctor you see and they should take you seriously.

Too often I was told in my early 20s too young too have that and seeking attention. Grrr!!! Still upsets me now 4 decades later.

Whatever you know causes you pain try to avoid that until you see your Rheumatologist. Get your parents to write permanent excuses until further notice.

I was dismissed by countless doctors in my nearly 7 decades of life.

I have 60 diagnoses and 2 pending. One finally obtained through DNA double testing at age 63 5 years ago now. Inherited Erythromelalgia...I’m one of 3 worldwide with this rarest form of a rare disease/condition. It was the one problem with a multitude of symptoms that so many doctors dismissed me over called me crazy or seeking attention about.

I didn’t give up on seeking answers and that finally paid off in validation. Thank God.

You aren’t crazy or seeking attention. You feel what you experience.

You’re so young and it’s all overwhelming and confusing.

You can have a mild form of EDS according to my top notch Rehabilitation Specialist. At the time he diagnosed me with mild EDS it was due to my severe hyper mobility. I have experienced all of the same injuries you have mentioned plus I have a history of 37 ground level falls and 1 35 ft fall from a tree. In 2000 a series of falls caused my right leg to shorten and because at the time I didn’t seek treatment it slowly kept getting shorter until I needed special aids to help me walk only recently got those.

This is a long reply but I’m trying to teach you to listen to your body and care for it. I pushed through my pain ignoring it and I’m disabled because I didn’t listen to mine.

I’m willing to chat more if I need to explain better anything I’ve written to you.

Please take care and I pray that you will get the medical treatment and care that you deserve and need sweetie.

Abundant blessings.

EJ 😊🌿🌸🦋🙏🤗💗😇🕊

5 likes
Reply
Tillyray

Hi and welcome🙂

I can't really add anything more to the excellent reply you have already had from honeybug, other than to tell you that when I was young I felt the same pains that you are experiencing now..

It took decades for me to get an accurate diagnosis. Finally I got diagnosed with hypermobile Ehlers danlos syndrome which was such a relief. I could then understand what I was dealing with.

My son also has the same diagnosed condition. With medical letters explaining his condition and how it affects him he has been able to attend college where he received kindness and understanding from his tutors. When he wasn't able to attend, arrangements were made for him to take a period of time to study from home. He was allowed extra breaks in class, and additional time to submit art work for exams.

Being hypermobile without pain or problems is an advantage for gymnasts and other similar performers, but hypermobility with pain is a sign of a condition. As honeybug explained, it needs to be properly assessed by a rheumatologist who is specialised in hypermobity conditions. A general rheumatologist may not recognise the significance of hypermobility or be able to connect your other symptoms to it. I had been seen by several rheumatologists before going to a hypermobility clinic. All the other Doctors I had seen had all noticed I had hypermobile joints, but they didn't recognise that my pain and other symptoms were connected.

Although it is a struggle for me now because I am old, I can now take preventative measures against injury, and I have the advantage of being able to learn to manage my condition better.

Please feel free to ask any questions on here, we understand what its like and are happy to try to help.

Very best wishes xxx

4 likes
Reply
honeybug
honeybug
in reply to Tillyray

Excellent reply Tillyray

😊🌿🌸🦋

Sorry you and your son both suffer from this condition.

Big gentle hugs 🤗 love 💗 and prayers 🙏.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

1 like
Reply
Myflexiblefriend

My 16 year old daughter was diagnosed this year with Hypermobility Spectrum Disorder which is the current diagnosis for hypermobility that presents with pain (and related problems such as joint instability and popping etc) but isn't technically EDS. We had a very hard time finding a doctor who knew enough to diagnose HSD. I would just encourage you to not give up in getting a diagnosis and remain committed to taking care if yourself. There is a link on this site to an excellent checklist that you can take to your GP so he or she can diagnose you. Very best regards to you.

5 likes
Reply
Myflexiblefriend

PS the things that have helped my daughter are avoiding anything that causes bad pain (she gave up ballet), daily PT program working with a Therapist who understands HSD/EDS, plus acupuncture for pain management. She's not pain free but she's way better than she was last November when she couldn't climb the stairs at our house and just kept getting worse. She's even running a few days a week now which is great. Don't give up! 💖💖💖

3 likes
Reply
Calicocat

The advice given here already is excellent. I’d just add that people with Joint Hypermobility Syndrome can have the same comorbidities as those with Hypermobile EDS. I have the version that doesn’t have dislocations, informally known as a “stiff zebra”. I am over 50 with Beighton score 4/9, meet all the former Brighton criteria. I don’t have a marfan habitus body type but have slightly shorter upper limbs and a longer trunk, a bit like dwarfism but with normal height. (They have some of the same connective tissue hardships as we do - our genetic cousins perhaps?) My niece has two sons with marfan habitus appearance. Here’s the website of Dr Sharon Meglathery, a psychiatrist from the USA who has a second specialty in internal medicine. She has EDS herself. rccxandillness.com. Apart from her gene theory, she lists most of the comorbidities two-thirds down. I’ll add a few more that I have: a heart conduction abnormality (mine is atrial flutter), crowded teeth and partial syndactyly (slight skin webbing between 2nd and 3rd toes and/or between index/middle fingers or middle/ring fingers). The last one is mentioned by Dr Jaime Bravo Silva, a rheumatologist in Chile on his bilingual website. He also has EDS. If you recognise a number of the comorbidities in yourself and several generations of your family, then you’ll see that there are gaps in some of the medical literature. Also check out Jan Groh’s website ohtwist.com/about-eds/comor... Both Dr Sharon and Jan Groh have very good private Facebook groups and I’ve found numerous research and other good articles that way. Another factor is that we have sensitivities with general anaesthetic, not only local. There’s also an issue with progesterone and copper. In my family several of us have had thyroid issues, Mast Cell Activation Disorder, ME/CFS, endometriosis, Fibromuscular Dysplasia, a deviated septum, infantile urethra, infantile uterus, interstitial cystitis.

Reply

You may also like...