Hidden in Thyroid UK9 months ago
This is Ehlers-Danlos correct?
Could this be Ehlers-Danlos Syndrome?
Hidden in Ehlers-Danlos Support UK5 years ago
Hi, I've just joined today and this is my story.
Well, I've always been very bendy. Not to the point of doing the splits - I've never, EVER m...
Hughes, Sjogrens and Ehlers Danlos Syndrome
floss112 in Sticky Blood-Hughes Syndrome Support4 years ago
Just wondered if anyone else has been diagnosed with Ehlers-Danlos Syndrome (inheritable connective tissue disorder) along with their Hug...
POTS, Dysautonomia & Ehlers Danlos Syndrome....
34Ziggy in Arrhythmia Alliance5 years ago
Hi everyone, nice to meet you... I am a newly diagnosed patient as of the begining of the year... Just want to introduce myself, I just foug...
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Is there a difference between hypermobility syndrome and ehler danlos syndrome?
missteal in Ehlers-Danlos Support UK6 years ago
I have had a formal diagnosis of hypermobility syndrome but have recently been told by some people that this is the same as EDS hypermobilit...
are ehler danlos 3 and hypermobility syndrome one and the same ?
Does anybody else have Hypermobility Syndrome/Ehlers Danlos Syndrome?
earthdweller in Parkinson's Movement4 years ago
I've had this syndrome since 2001, and I feel as though this is heavily related to my Parkinson's symptoms. My right side is where my joint...
Scardosis and Ehlers Danlos Syndrome (EDS) - Ellen shares her experience.
liveurlife in LDN Research Trust2 years ago
Ellen from US - Ldn for Sarcoidosis & Ehlers Danlos Syndrome
liveurlife in LDN Research Trust3 years ago
Anyone else with Ehlers Danlos Syndrome (EDS) or hyper mobility syndrome? (To go with their Lupus that is!)
Blueberry in LUPUS UK6 years ago
I'm finding writing about everything quite cathartic, especially now I've found somewhere with so many similar people!
I was just wondering...
Fertility treatment/egg freezing and Ehlers Danlos/POTS syndromes- anyone out there with same story?
Jennyfromtheblock in Fertility Network UK2 years ago
I am new to the forum. Have Ehlers Danlos Syndrome type 3, Postural Orthostatic Tachycardia Syndrome, syncope and for the last 3 yea...
Anyone: have you been diagnosed with Achenbach syndrome (paroxysmal haematoma of fingers (& toes)) or Ehlers Danlos?
Barnclown in The Australian Sjögren's Syndrome Association5 years ago
Does anyone also have what I've been calling \"tissue bleeds\" in their fingers & toes. I'm 60 and have experienced these since my 20s, and ...
Barnclown in Scleroderma & Raynaud's UK (SRUK)5 years ago
In September I posted a ? asking if anyone has what I called \"tissue bleeds\" in their fingers & toes, and I described my version of these....
Lupus + Marfan + Ehlers-Danlos? Syndrome. My rheumy is convinced that this is what I'm suffering from (having tests etc).
jayniey in LUPUS UK6 years ago
Does anyone know anything about this? She told me it's very rare (about 1 in 200,000). I've been stuck in front of a psych (without being as...
Hi out there! Has anyone got joint hypermobility syndrome (Ehlers-Danlos Syndrome III) and having problems with Pulmonary Rehab exercises?
stillmovin in British Lung Foundation5 years agoPOPULAR
I haven't yet been on my course but I am worried about the type of repetitive exercises they set you to do as us bendy people with EDS have ...
Warning to all with an autoimmune disease, I have Lupus and Sjögren's. I also have Ehlers Danlos syndrome and am going for genetic testing.
Pam-EDS in LUPUS UK2 years ago
Hi folks just a word of warning if you have SS or Lupus RA or PsA and are 'double Jointed' hyper mobile. Please tell your consultants, GP an...
lana59 in Macular Society2 years ago
I also have hypermobility and Ehlers Danlos Syndrome Type III with overlaps in other types of EDS.
ehlersdanlosuk in Ehlers-Danlos Support UK6 years ago
Welcome to the Ehlers-Danlos Support UK community!
The point of this community is to provide a space where you can share your experience, s...
Introduce yourself to the community
LuciaHU in Annabelle's Challenge - Vascular Ehlers-Danlos4 years ago
We’re excited about what you can go on to do for those interested in Vascular Ehlers-Danlos Syndrome. We hope you are too. Write somet...
what type of EDS is really stretchy skin,especially on the face ?
Feel This Pain: Ehlers-Danlos
DontPunishPain in LUPUS UK3 years ago
Much more than just a \"stretchy skin\" disease, Ehlers-Danlos is a very painful syndrome with very real consequences for those who have it.
Does anyone with Scleroderma have a history of Ellers Danlos in the past?
lifeforce in Scleroderma & Raynaud's UK (SRUK)5 years ago
Was told i have \"orthostatic hypotension\" ? Thoughts?
kellyrosemua in Anxiety Support9 months ago
has anyone else been told they have this along with their anxiety? apparently my blood pressure drops around 20 points when i stand up.. all...
Hairgal in Restless Legs Syndromea year ago
I don't know if I have RLS I just know that I hurt and ache all over. I cannot sit down for any length of time . I start to hurt and I need...
Stomping Your TOE & Hypermobility Syndrome
JeffAjaxSmith in British Lung Foundationa year ago
Like really HOW do hou know if done damage to toes if stomp your toe and suffering from Hypermobility Syndrome or as its also known Ehlers D...
Hello I'm new.
JACKIEN61 in Cloudy with a Chance of Pain2 years ago
I'm Jackie , I'm a 50 something sufferer of chronic pain thanks to Ehlers Danlos Syndrome and Fibromyalgia. I try to look on the...
Has anyone also got a diagnosis of POTS?
Jenny14 in LUPUS UK3 years ago
Hello All, I have recently been diagnosed with joint hypermobility syndrome with associated pots (postural orthostatic tachycardia syndrome)...
First pregnancy jitter!
JessRose in NCTa month ago
Hello, I’ve just found out I’m pregnant (for the first time!)
I must be around 6-7 weeks, according to the due date calculator! I rang my GP...
Bendy elbows, knees and back? Really painful, please help?!
littlemissshy in Scleroderma & Raynaud's UK (SRUK)5 years ago
The (wrong) rheumatologist told me that my elbows, knees and back bend too far the wrong way, but since I saw her it has gotten far worse so...
Has anyone had problems with walking and ur knees start to shake and u end up needing help to walk so fed up been in bed from Friday xx
Lisawright in Endometriosis UK5 years ago
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