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 ⭐

[honeybug in reply to Entwicklung]

Hi Ewl 😊

Thank you for your kindness and words.

I’m sorry to hear that such a simple game caused you painful dislocations but at least you discovered the outcome early on. Lessons learned from unpleasant experiences.

At age 5. I loved ballet and tap dancing. Enrolled in classes for both. Was asked to drop out due to extra loose joints and inability to control my ankles which is a must in every dance move.

Now decades later I’m experiencing my fingers/toe joints pull apart while using them. Results are bone on bone in my right big toe and my fingers/ thumbs all have extra bone deposits from wear and tear motion ; not only unsightly but painful too.

In my spine I have the same results plus spurring.

I have frequent sprained ankles once occurred on vacation and was really bad.

About ten years ago out of the blue my tendons and ligaments in both ankles tore. I had to wear a ‘moon boot’ for 6 months on my left one first followed by my right one for another 6 months. It was recommended I have surgery on the left one due to the severity of it but I opted not to and so glad I didn’t go through all the additional pain and suffering

I need reconstruction surgery on both wrists and thumbs. Not doing it. 3 months in a brace then intense therapy for both too much to suffer from.

There are more stories but at least you can get an idea from these how my journey with hEDS has been going.

Hope you do much better with yours.

Best wishes always.

EJ 😊🙏🕊️🌿🌸🦋

[Entwicklung in reply to honeybug]

Hi again EJ...

Oh lord that's such a journey and what a shame you weren't able to continue your passions early on.

The ankle problems must have been excruciating and certainly not something you want to deal with on holiday 😱 I hope that's all settled and you're safer on your feet at this point.

I think for a lot of years I got away with much of the hypermobility problems because I was very strong and muscular. I carry a lot of it now still, but with additional weight and less strength all the time. I think this is where it goes downhill. I really need to train again and want to, but the exhaustion is preventing it. I'm trying to walk each day as a way back in at least. Even doing a shopping trip can obliterate me for a day or two at the moment so the gym is just out of the question. I will find a way back though... I have to.

I don't blame you on the decisions to avoid all those surgery's either btw, I can imagine that would have took an awful lot in terms of recovery. And from what I've read, eds people dont heal so well either so it could have been a long process.

Well, here's to trying our best and to continuous improvements ... Even if they're small!

[honeybug in reply to Entwicklung]

Hi again Ewl 😊

I’m sorry you’ve suffered the negative effects of activities. It’s so frustrating to go through that when we know that it’s taken for granted by healthy people. Seems like the more we try the more we are defeated.

I have faith in you to regain your strength. Just pace yourself. Start by doing simple exercises while sitting. Just motion at first for about a week. Then add 1 minute a day for another. Once you tolerate this then add 1# weights. Eventually use your bed to expand to whole body motion while laying down. You can research exercises for limited mobility on line. As long as you don’t suffer setbacks you’ll do great.

When you need a break take one. Our muscles have great memories and will resume where left off.

Be sure to get good sleep and rest when needed and you’ll do great my friend.

Abundant blessings and prayers.

EJ 🤗🩷🥰🙏🕊️🌿🌸🦋

[Entwicklung in reply to honeybug]

Ah thank you so much. This is exactly the message I needed and I'm going to work on this.

I really can't wait to get back doing some 'real' exercise, my body always responded so well to it and it was great for the mind too.

Thanks again 🙏

[honeybug in reply to Entwicklung]

Most welcome love. Best wishes for success remembering to pace yourself.

Love and prayers

EJ 🤗🩷🥰🙏🕊️🌿🌸🦋

[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

[Entwicklung in reply to Wend66]

Hi Wend66,

Ah thank you for such a useful post. I love that picture at the bottom too... It really hits home looking at that.

I will look into that lady as I do like researching o. YouTube (I think audio/video is easiest for me to take things in) and I will certainly look at joining the ED group. I have been on the official website a few times already and it's a great source of information. They even have a heds Vs Veds article which I found useful. Although, I'm too close to the situation to be able to look at it objectively I imagine. My brain potentially jumps to a worse case scenario at times.

Thanks for the message of hope too - sometimes this is much needed. The non stop pain and issues every day can really grind you down. Must stay focused on the positives! 💪

I have a suspicion that my gene may have been inherited from my mum... No evidence other than she has some joints that are hypermobile (although not as many as she is approaching 70) and she has cardiovascular issues, lots of joint pain and arthritis for years, tinnitus, diverticulitis and a whole host of other issues too.

The tachycardia / cheat pain is one of the worst things... My gp initially offered me beta blockers but I haven't tried them yet as I get anxious about long term medications. I'm only just starting to take painkillers after realising how much I'm actually dealing with every day and after listening to a podcast that explained how living with untreated chronic pain can have a bad effect on the cardiovascular system in the long run.

It's such a minefield!

Many thanks again for your help and positivity!

[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.

[Entwicklung in reply to Typicallygaslit]

Ah I'm sorry to hear that, sounds so difficult. I can sympathise with a lot of it and feel in a similar boat especially regarding the sleep problems. I think this is a vicious cycle too, because the lack of sleep causes more symptoms, then the symptoms affect the sleep. This is something I'm going to try to fix first by trying some different things and seeing what works.

On the positive side the fact you've eaten healthy has probably helped you avoid the mast cell issues! This is a great thing.

It sounds like you're doing a lot right and I really hope things improve soon!

And hopefully we can revive this forum a little and get some more interaction going 🤞⭐

[Typicallygaslit in reply to Entwicklung]

Thanks for responding! I used to get very wound up, and this would prevent me from sleeping, which in turn would wind me up even more. It was not a mental issue, it was purely physical. I can now see that I needed to whip up a lot of adrenaline in order to get through the day and it was very hard to come down from that. Meditation or calming herbs didn’t touch it. The situation is different now because I’ve been diagnosed with restless legs syndrome and have to take an opioid to control it. It has a lot of horrible side effects. I don’t seem to metabolise serotonin and so a lot of common drugs cause me tremendous problems such as depression and increased day time fatigue. The opioid wakes me up even more, then I have to find something to counteract it and that usually triggers more RLS… it’s a complete mess and I can’t find my way out of it. I’ve also tried medical cannabis (THC not CBD) which helps with sleep but increases the already overwhelming tinnitus noise and pain, and also contributes to me feeling worse during the day. I haven’t found any resonance within the hEDS community so maybe I’m unusual. No one seems to understand what I mean when I say that serotonin agonists are pure poison for me. I get very triggered when CBT is suggested (as it is in every article about sleep problems), I find it patronising, as if I haven’t tried everything in my might to fix the problems. Oh well.

Do you have mast cell issues? I grew up in a very healthy environment (summers in nature and we also had animals), and then have been a healthy eater all my life, I’m sure it all helps. Sadly I’m too old for things to improve anymore, and I’m grieving my life a lot now. I’m trying my best to cut down on the horrible night meds but doubt I can be totally free from the opioid as the insomnia is so severe.

[Entwicklung in reply to Typicallygaslit]

Ah that sounds really tough. I can relate to your feelings about having tried so much and nothing 'working', particularly on the sleep front. It can be patronising at times when people suggest obvious things, but I don't normally mind that as I know that at least people want to help. Not sure about you, but my 'circadian rhythm' seems to be off kilter. I do seem to be able to sleep or more able to get to sleep at the most inconvenient times. This is normally when Ive lay awake through the night but then need to get up to drive the kids to school and then my body says ok I'm tired now we can sleep 🙃😅

And yes I seem to be having some mast cell issues but nothing confirmed as yet. I have allergy type symptoms to various things including foods and other allergens... And more recently noticed my skin marks excessively after running my fingers over it. This was a test I saw somewhere online but I can't remember where it was now.

I'm not sure if this is useful to you or not, but I noticed a poster in the GP office the other day about a phone line you can call if you need to talk... It can be a one off type situation or even a regular thing. It sounded quite good and am considering using it myself. I have plenty of people around me who are amazing, but health isn't something I feel I can discuss openly with them as everyone has enough of their own problems and I doubt they could understand where I'm coming from. If you like, I could get the details for you?

As hard as it is, we need to stay focused on the positives 💪

[Typicallygaslit in reply to Entwicklung]

Thanks for replying! You know they are now starting to connect EDS with other conditions such as fibromyalgia, ME, autism, ADHD… most of us seem to have a combination of some of these. Unfortunately when I tried to discuss the possibility of ADHD/ADD, the psychiatrist just jumped on me and tried to pin me down for ‘somatisation disorder’ and hypochondria. He totally gaslit my brains out and I’ve been suffering from some level of PTSD for 4 years since that happened. He just ignored my diagnoses of physiological disorders and claimed I have nothing neurologically wrong with me. He was extremely abusive, but I can’t prove it because I didn’t record it (which is something the ombudsman pointed out - has it really come that now?!). I’ve tried to get help but have been stonewalled everywhere. Last autumn I reached out to one of the EDS charities and the coordinator said she was more than happy to help. Months passed by and she said it’s a waiting game… she claimed to have contacted the psychiatrist, the health board, the MP… all the ones I was struggling with. Then she just disappeared. I don’t think she did anything whatsoever. Before she went offline on messenger, she said she’d moved so maybe someone closer to me, coordinator no 2, could take over, so I contacted them, but she was really patronising and assumed I needed ‘constant support’, which she could not give. That was not the issue at all. I just wanted to be able to discuss with coordinator 1 what we were going to do, you know in some normal way, such as through emails, instead of waiting forever for her to appear on messenger! She also said well hopefully the doctor had not misdiagnosed me! I was stunned. I mean why would she gaslight me as well?? Sure she didn’t know the whole story but she wasn’t interested and just jumped on some random assumptions about me and my issue. I couldn’t believe that ‘one of us’ would treat me like that. I then contacted the head office about all this but have they responded… well no.

Of course I’m really upset. I have done my best not to start screaming at them but restraint is wearing me out like you wouldn’t believe. In addition I have problems communicating orally because of severe hyperacusis and reactive tinnitus so I don’t do phone calls and was hoping to get help from someone who wouldn’t mind making some of those for me. I was told I need an advocate but where do you find one? I was given the impression that the coordinator no 1 was happy to act like one in regard to the misdiagnosis (actually there were two because I was also told I have FND which I don’t).

I’m sure you can appreciate how stressed I am about ‘help’. Dealing with benefits is hard enough without all this weirdness. It’s not the only weirdness either, a lot of doctors and PTs and OTs have been acting really weird as well. I don’t know what information about me is being circulated within the NHS. I’m soon 59 and am just not as people pleasing as I used to be.

As for the sleep issues, well it’s very common not to be able to sleep when we’re supposed to sleep. Serotonin levels go up at night and all my health problems get worse at night. I’ve thought about it long and hard and I more or less see where the problem lies. Are you sure you don’t have restless legs? I didn’t appreciate the complication until I got it worse during menopause. I’m on a very good forum here for that and there’s tons of information. I tend to sleep better when the dopamine levels start to go up in the morning. Unfortunately the medication for restless legs wakes me up even more while the ones that get you to sleep increase the restlessness… it’s a vicious circle.

Are you at the beginnning of your journey? If you are, then you have a lot to discover… I’m sorry to say. This is a very complicated disease and health practitioners are generally clueless.

Are you taking any medications and how are they working for you if you are?

[Tryingtolive62]

hi what type do you have? I’m not new my daughter has it and everything else that goes with it. I’m 62 was told to get checked at the human genetics hospital. It’s a long wait I won’t know for months. It’s suspected by my doctors. I have some form. How are you getting along? What symptoms do you have. It’s a mess of a syndrome . I won’t get into what’s going on with you. I’m not a geneticist or neurologist. I’m here to listen and learn. I may be able to answer some questions but not based on your diagnosis. It’s so complicated. I wish you the best !

[Entwicklung in reply to Tryingtolive62]

Hi there,

I'm not sure as yet, I'm awaiting info in writing from the specialist I seen, but he did say further tests would be needed to find out more and decide on a course of action.

I'm suffering a lot recently tbh, the fatigue and general pains and other annoying problems (like 3hrs sleep a night, twitching and palpitations etc) can get me down. I just want to get out and about and play with my kids again but it's difficult at the moment.

I'm very much hoping it's not the vascular type, but I do have features that fit the profile. I also appear to have POTS and MCAS issues which, from what I read, suggests the hypermobile type hEDS as they are linked together. My hypermobility seems to be all in my smaller joints though (fingers wrists toes), but my back/neck are involved when you fit it all together if say.

Ah it sounds like your daughter may be in a similar position to me - how is she getting on and what type does she have, did they find that out yet? Apparently the only type they haven't found a gene for is hEDS, but it's the most common also.

[Tryingtolive62 in reply to Entwicklung]

Yes her joints just come out of every part that can dislocate I’m sorry you’re in so much pain.

[Eazfl]

As well as all the other recommended things others have mentioned which are all fantastic resources, last year a muscularskeletal specialist recommended Jeannie Di Bonn’s The Zebra Club, you can join for a week for free to see if is for you or pay for a month, it is affordable with meditations and gentle exercises and, most wonderfully, a community of EDS people who offer advice and support. I have learned so much. Join via her website if you can. It is probably different to what you may have come across but she is endorsed by The EDS society. Best of luck

[Tryingtolive62 in reply to Eazfl]

where do I find this?

[Eazfl in reply to Tryingtolive62]

thezebra.club join through the website if you can.

[Tryingtolive62 in reply to Eazfl]

Thanks I’m waiting to be diagnosed to .

[Tryingtolive62 in reply to Eazfl]

good luck with your diagnosis 🙏🏼

[Entwicklung]

Ah wow that's a brilliant suggestion I like the sound of that, thanks so much ⭐⭐⭐

[Rubythewookie]

I was diagnosed with hEDS last year, so still learning to navigate this life. I’m finding you get varying amounts of support depending on your health care provider, which can be frustrating.

My biggest area of pain right now seems to be TMJ, which I’m getting support from my dentist with.

How’s everyone else? And how do you navigate living with EDS?

[Wend66 in reply to Rubythewookie]

Hi Rubythewookie,great name by the way ☺️ .It takes time to adjust to health changes,especially with EDS because often symptoms cannot be seen.

Over the many decades since my diagnosis, it's a journey of self discovery, basically becoming an expert patient with yourself.

I've kind of learnt over time that it's only me that knows what I am experiencing. So I tend to act on what my needs are in this moment that will take me forward,reaching out to other forums like Breathworks U.K,Mindfulness meditation and awareness are my grounding exercises.

Getting support from health care providers is not an easy one these days and I get frustrated too,especially when I'm trying to come off medications, I thought I would get more support but left to do it on my own yet again.

But if you love learning about and understanding this condition in it's unique ways,my way is looking at ways to calm my nervous system, eat well, awareness of what is happening right now.

Chronic Pain is the toughest one for me with subluxation of my knees and Spine.

My mobility scooter is a gem 💎 for getting me around as walking is challenging.

Looking at what you can do,rather than what you can't is a mantra I try and use to shift my state.

We learn on this journey, take it slowly and I'm sure you will find a path,it can take us in many directions, not a straight forward one,but sharing with others without judgement is very helpful.

Pleased your dentist is of support with your jaw.

Take care

W

[Entwicklung]

Really pleased to know there's still people here and how helpful and kind you all are too. ❤️

My journey continues, albeit slowly.