Who's here, what form of EDS do you have and how are you doing?

[Entwicklung]

Hi there - I'm only on the beginning of my journey in respect to EDS, but I noticed the posts are few and far between on here so I wanted to see who's still active in this community?

So, how are we getting on?

[honeybug]

I still read posts. I’ve lost 3 loved ones in 18 months and the stress has caused me complications from comorbidities flare ups.

I’ve had hEDS since age 5. Progressively worse now dealing with OA multiple locations over body.

I mostly read posts to learn from other’s experiences.

EJ

[Entwicklung in reply to honeybug]

Ah I'm really sorry to hear that, it must be so stressful. Certainly not helpful when you have chronic illnesses too.

Like you, I like to learn from others and their experiences. I've often found some regular people are more informed on certain issues than medical professionals!

Wow age 5! I wonder if I'm similar myself now that I'm aware of it... I remember my mum/nan often telling me the story of them lifting me up by the arms as we walked along (I'm sure you remember the game!), and both my arms coming out of their sockets at the shoulders at the same time when I was a kid. It was a funny story but perhaps meaningful now to an extent.

Anyway, I hope you're doing ok, take care ⭐

[Wend66]

Hi there,I'm not new to EDS but I am to this platform, so I don't really know how active it is.I have had a very long journey of 4 decades living with the symptoms of Hypermobility Elhers Danlos Syndrome, learnt alot and still learning.

Have you joined the EDS Main Support team and Newsletter online,you get a magazine twice a year with joining.

😊 Happy to help if you have any questions.

I have the familiar type as I inherited connective tissue problems from my father.

Have you joined any support groups yet, they can be very comforting to share your experiences.

Are you seeing a good specialist to help you.

Send me a message if I can help in anyway.

Warmest Wishes

Wendy

[Entwicklung in reply to Wend66]

Hi Wendy... Wowww 4 decades of this! I imagine you're very knowledgeable about this by this point!

I've only recently learned about this when investigated by a cardiologist and discovered my small joints are VERY flexible. It's hard to believe I've got to the age of 41 without realising my toes bend backwards more than most people's would do forwards 🤣

I'm not even sure on my 'type' of hypermobility or ED yet to be honest, but trying to research. Because of the nature of the many troubles I'm having I'm worried about the vascular type. Hopefully I can discuss this with the cardiologist next week. I don't suppose you're aware of a way to quickly differentiate between for example hEDS and vEDS? In fairness, it's floating around that I have the eds / pots /cas triad which appears to commonly go together.

Either way, I need to make some improvements as fast as possible; I'm loving with way too many problems here! (Interestingly, dislocations etc aren't one of them; it's more body pain, sleep probs, BP and HR issues, crippling fatigue doing normal day to day activities... )

Ah thanks for the heads up, I'll have a look at joining the main EDS support team - is that through this website or another? (Sorry, I'm quite new too). In terms of this forum, I find that there's a vast difference in activity levels depending on the sub forum you enter. For example, the thyroid UK forum is very active and has helpful members. I ended up there initially as I was searching for my diagnosis and was on the wrong path initially, but getting there now luckily.

I also like the idea of support groups, I think they could be useful. Any advice on where to go would be very much appreciated 😀

Best wishes and thanks for reaching out ⭐

[MindfulSquirrel]

I’m still relatively new to this too. I got a diagnosis of hEDS last May (9 months after a diagnosis of Pernicious Anaemia) and probably only met the full criteria for the last 5 years. Prior to that I was just bendy with rounded shoulders and frequent constipation/backache/bloating/clumsiness, plus the occasional unexplained joint injury that likewise magically corrected itself. Since the turn of this decade it has been a steady worsening of symptoms, not helped by the way my muscles have automatically compensated for hip sublaxations (which I didn’t recognise as such at the time) and thrown my posture off in lots of subtle ways.

I’m not sure what caused the change. PA causes muscles weakness so that probably played a role (I was quite strong previously), and the time when I was on folic acid certainly didn’t help. Whilst there’s not been a gene implicated in hEDS, it has been suggested that having a homozygous variation in one of the two mainly studied MFTHR SNPs leads to impaired folate processing and may be associated with hEDS, and I’ve got the more problematic variant of the two. My own hunch is that COVID caused some sort of epigenetic change so whilst I was OK before, now I’m not - according to the rheumatologist who diagnosed me there’s a bunch of women who went from hypermobile to HJD or hEDS after COVID. Then there’s also the approaching spectre of perimenopause, which is known to impact joints and worsen hEDS for many. I should be starting HRT soon and I’m praying it does something to help.

I’m currently signed off work for two weeks because of the most recent hip subluxation, and I’m trying to work on my posture to counteract all those muscle adjustments I mentioned. As a result various parts of me are screaming as muscles that haven’t been used properly for ages are re-engaged, including something going twang in my foot.

This morning I could count five joints that were sore, not including my back, so you’ve probably caught me on a particularly miserable day. 😭 Sorry for that! It’s not all awful though. Up until now, I was finding appropriate physio to be really helpful and my shoulders are effortlessly pulled back for the first time I remember, so a diagnosis definitely has advantages. 🙂

[MindfulSquirrel in reply to MindfulSquirrel]

I’m also on the Pernicious Anaemia forum here and I don’t know if it is more to do with my alerts rather than traffic, but this one does seem quieter than the other one (which doesn’t shut up 😂)

[Entwicklung in reply to MindfulSquirrel]

Hey there!

Thanks for reaching out... Sounds like a tough time and I can sympathise with much of it (not the menopause situation tho I'm afraid 😅).

I really appreciate the info about the folate issue (I have had a deficiency and now it could make sense!), and also about the potential reason for your issues over the last five years. That's fascinating as my cardiologist also said the same thing is a likely cause for me based on my timeline of events. It's been a long five years that's for sure! It's so interesting this, because although now I've noticed my hypermobile small joints (how I didn't is beyond me... My toes oh my word it's gross tbh), I didn't have 'trouble' with them as such other than aches and pains. I think I've got used to living with a lot of pain and just 'cracking on', and this has led to more issues. I'm noticing it more at this point.

I don't seem to have hypermobility in my large joints like shoulders, knees and elbows like you, but it sounds very difficult with the subluxations. Only hip issues I have is if I sleep on my front by accident... Then I can't move for some time in the morning 😅 My back as been an issue too, with a bulging disc. Some physio was good for this, but by far the best thing was cycling. Just being in that position on a bike for a while each day absolutely changed everything. For anyone with a chronic back (and potentially hip?) issue I would recommend at least trying it if possible. I couldn't believe the difference and now my back is in a good place.

Back to the EDS situation, the fact I only have 'small joints' hypermobility really is worrying for me as I read this connects with the vEDS type. I'm looking forward to having somebody confidently rule this out, then I can get on with happily living my achy painy life 🤣

What you say about the muscles tensing up over the longer term is huge. I think this is a large part of my problem, my traps and neck are absolutely solid. I've had regular massages that helped but it always ends up back the same way. I understand where the term 'coat hanger' pain comes from now.

Haha ahhh your message sounds very upbeat for someone in so much pain so don't be worrying about that!

Really glad you posted; I learned something new and I'm sure others will too!

[Wend66]

Hi there,just been reading the posts.We are all experiencing many difficulties with this condition which is actually quite normal. Very very difficult isn't it,especially Chronic Pain and fatigue, I also have subluxation in both knees and 2 vertebrae are very lax,but this has taken 30 yrs for the ligaments to stretch.Fingers are very bendy,so any repeated action like writing,knitting or holding a book causes alot of pain.

Going to be covered in Sports tape soon 😂

( Not that funny really)

EDS spectrums are very complex and it does take a wee bit of time to put the whole picture together.

Really does sound like you have a type of connective tissue disorder that needs investigating.

I do hope your cardiologist will help with your concerns about vEDS.

If you join the EDS support group

Elhers Danlos Support UK

Fragile Links is the magazine,£8.00 for the year

There have been alot of articles about

vEDS,you can order back copies

Plus they have a helpline so you can ask for advice.

Are there any specialists in Hypermobility/ EDS in your area 🤔, NHS

Or any private ones if affordable?

I belong to an organisation called

Breathworks in Manchester, founded by

Vidyamala Burch

It's a fantastic and hopeful platform for

Living well with Chronic Pain, Illness and Stress.

Working with Skills to help live more Mindfully with whatever is happening.

Vidyamala Burch has written two books on Chronic health issues due to her own story.

She got an OBE from the queen last year for her amazing work helping people.

Have a look at her on YouTube or the

Breathworks UK.

Do you have other members of your family,past generations that were bendy people.

Often this is a sign that something has been inherited?

I have a fantastic book that might interest you,it outlines all the spectrums with connective tissue/ collagen disorders.I'll send a picture.

If you can just take things slowly, there isn't a quick fix for these conditions, but definitely need to clarify what's happening especially with your heart.

I have tachycardia so take a small amount of a beta blocker to stop it racing so fast.

Keep researching and get as much help as possible, there is hope,even with living with horrible Pain, it does change...

Thanks for reaching out

Need to get ready for my Mindfulness meditation class, which really helps me become calmer.

My journey is balancing things....and

Window of tolerance

Working on my needs rather than pushing myself too hard.

All work in progress

Keep intouch

Information book

[Typicallygaslit]

I haven’t found any group where you actually get responses from people. I don’t have allergies so I struggle a bit to fit in, most people like to talk about mast cell activation. I have severe insomnia and restless legs, as well as severe hyperacusis and tinnitus, and these preoccupy me a lot. Can’t find any answers within the hEDS communities. I have a daily exercise routine on my bedroom floor that keeps me from subluxing too much and also calms down the agitation and pain in my body. Other than that I’ve always been a healthy eater. Am 58 now, really tired of sickness. Have only been diagnosed for six years.