Been going down this rabbit hole and does this cause occipital neuralgia?
2026-09-10 10:15:31
0
Linds 🚗 🏍️ 📚 🪡 :
My husband just listening in to me watching TikTok he’s like ….. why is he talking about you 🤣🤣🤣 I know I’m hyper mobile but think it’s edging more to the hsd or heds my dentist won’t pull my teeth himself as he says the right of my jaw is very unstable
2026-09-11 19:27:30
1
Sarah Evans977 :
Interesting. I have hyper mobility, ADHD and stomach issues 🤔🤔🤔
2026-09-10 18:04:42
0
Lyndsay :
Labelled as fibromyalgia
2026-09-01 21:51:37
6
Emma Snowden46 :
I have been having symptoms for 10 years saw a rheumatologist in 2023 and was dismissed currently under a new Rheumatologist and was also referred to Neurology, currently waiting MRI results since June, this rheumatologist has said I have hypermobility but I would like to know the difference between HSD and EDS it’s all so confusing
2026-09-01 20:53:46
2
Alli :
Nothing should take 20yrs for a diagnosis
2026-09-02 07:37:50
16
Katherine :
After you have a diagnosis, what do you do next? The DRs Just kind of drop you?
2026-09-02 07:33:40
13
Elizabeth Strawn390 :
I was diagnosed in 2017 and guess how much help I've had?..Zero😳. It sucks. I don't even bother going to the GP anymore and just sort myself out.
2026-09-01 19:26:42
8
SammyL0u :
I was rudely diagnosed in Covid by a physio. No support or help. Sick of going to the GP with different things. Being treated one joint at a time and not as a whole person. I’m sure I have HSD but how do you find that out when just dismissed all the time
2026-09-01 22:22:39
4
Amanda Blondie :
Are you taking patients? 😭
2026-09-01 19:55:10
2
Sunshine :
Can we books to see you for this type of diagnosis ?
2026-09-02 20:13:52
1
Selina Powney :
my body is falling apart.bmy knees.hips.lock jaw.my hart valve need replacing + widening undery valave.im hypermobile.what do you think I should be asking about now ??
2026-09-03 05:41:07
1
lauren 🏴 :
when I was diagnosed they labelled it benign joint hypermobility syndrome when there's sod all benign about it 💀
2026-09-01 19:10:06
11
Jess | Vinted & Easy Cooking :
Why do you need this to be diagnosed? Genuine question. As someone who is hypermobile, I know where the issues are and how I can manage it. That’s not to say I have this, I think it’s more likely hEDS, but as I say, what’s the need for the diagnosis?
2026-09-01 18:57:43
2
KimB83🏴 :
How would I go about getting an assessment of this? I have hyper mobility, joints dislocating, fertility issues, severe back pain, very clumsy and have had intracranial hypertension which required a lumbar puncture. Whenever I see my GP I to discuss pain I get the biggest eye roll. I’m also waiting on an ADHD assessment.
2026-09-02 16:59:52
4
Lynne Christine Wood :
is this different than Heds?
2026-09-02 18:53:44
1
acatcalledmouse :
How do we ask for testing?
2026-09-01 20:01:38
1
Ruby Noodles :
I'm 53, score really highly on the Brighton score, feel like a bag of 💩 most days and have done so for decades but no one ever wants to discuss joint hypermobile issues or eds. I'm sure it runs in family too.
2026-09-01 22:32:23
15
donnas800 :
This goes with autism
2026-09-01 18:55:03
8
Naomi Wallace :
Incompetent Dr won't diagnose my son with EDS till he reaches 18 because he is still growing. Glad the new guidelines start in the next few months.
2026-09-02 01:02:09
1
bigboss :
I've been diagnosed and left just like that no further test or consultations
2026-09-03 16:16:31
2
no :
i wish you were my gp because when I went to my gp to get a formal diagnosis, she told me to go private... like I've got the money for that 💀
2026-09-02 05:33:10
2
Maria 🏳️⚧️♿🇪🇺 🩷🤍🪻🤍🩷 :
And when you finally have the diagnosis, it still gets dismissed by every single doctor you see anyway.
2026-09-03 22:47:32
4
Afro_vibes_nation :
Yes, it is hyper mobility and I have it . Doctors never take it seriously!
2026-09-03 23:00:41
3
Pocket :
Are Ganglions common with HSD?
2026-09-01 22:37:33
2
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