Bath pain clinic inpatient, please help
Itsallinthehipsan hour ago
Hi guys , I got rejected from St Thomas as I’m not independent enough for their clinic ( they could of told me that on the phone insted if m...
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Discovery of HMS - Relief or Frustration?
WardenQueena day ago
I've been struggling with pain my whole life.
I remember being around the age of 6 and crying when walking home from school because my ankle...
2 Replies1 Like
About my son...
BlackInk2 days ago
Hello, I wonder whether anyone could tell me whether it sounds as though my 9 1/2 year old son might have EDS, or something similar?
Applying for pip
Immortalalice2 days ago
I have JHS/hEDS and I applied for pip last October. I finally have a f2f assessment for next week. I'm really worried I won't get anything a...
Trying to get back to work but it's hard
aliD472 days ago
Well I'm a newby in this hypo-ehlers lark. Trying to get back to work but it's a daily struggle of either pain or fatigue. Work agreed to re...
leeham3 days ago
Hey everyone. I have been diagnosed with scapular dyskinesis. Ive been through 2 rehab protocols with no sucess. I score 9 on the breighton ...
Craniocervical Instability Symptoms
ella123454 days ago
Does anyone suffer from craniocervical instability? I have some of the symptoms, including POTS but some days are worse than others an...
Newby at this and trying to deal with my job
aliD476 days ago
Hi, I've just recently been diagnosed on the 2 January this year so I'm still getting my head round it all. It all really kicked off a few y...
Any advice will be welcomed
Anne20188 days ago
My adult son has hEDS & POTS recently diagnosed, we applied for a bus pass and we were refused. The grounds for refusal was that he did not ...
Diagnosis in the UK (London) advice!
roselavenders13 days ago
Hi, I think I may have EDS (the hypermobility type most likely), but due to other complications which started 3 years ago ( M.E/CFS, lupus a...
What could be wrong with me?
Hidden13 days ago
About five months ago, I developed a mild itch in my urethra as I finish urinating. I wouldn't really describe it as an itch, or a pain, mor...
EDS and eating problems?
AliPixie14 days ago
Hi, does anyone else have stomach problems relating to hEDS? I’ve been constantly really bloated and an hour after I eat feel like I’ve been...
15 Replies3 Likes
Confused over diagnosis!
Stitchwitch9414 days ago
Hello all, I wonder if someone can help me, please?
I went for an assessment at the local fatigue clinic yesterday, and was seen by an endocr...
ME (cfs). Not hEDS
Danlos16615 days ago
My daughter saw a different rheumatologist today. She said symptoms sounded more like ME then hEDS even though I showed her a chart showing...
16 Replies1 Like
Vascular EDS gene testing in UK
bombsh3ll18 days ago
I have a diagnosis of hypermobile EDS made clinically with no genetic testing, however two of my family members have features suggesti...
Reply to are we the first in the family
KittenMam22 days ago
I'm the first and my daughter also has it. We have type 3. So we use lots of ace bandages and knee braces.
1 Reply1 Like
Any advice please
Trd29a month agoPOPULAR
Hi there I’ve been diagnosed with hyper mobility EDS for the past 10 years roughly and it seems to be getting worse maybe the older I get? I...
Talking to others with similar problems does nothing to improve services and access.
budgiefrienda month ago
After several miserable years of harassment by Social Services to "go out in the community" etc., and no understanding at all from GP surger...
2 Replies3 Likes
Post Your Top 5 Relief Managing Hacks for EDS/HSD
MontgomeryJa month ago
I was thinking whilst at work today that it might be a good idea for all of us with Hypermobile conditions, to post our own Top 5 methods of...
9 Replies5 Likes
Do family members have the same condition or are you the first in your family?
Danlos166a month ago
Hi does anyone with HEDS diagnosis have another family member with the same thing ? Thank you
Blue badge & bus pass
Anne2018a month ago
My son has hEDS and POTS, since going to OT he was recommended to apply for blue badge (for my car) and buss pass, has anyone had any proble...
Thumb pain after accident
Gracey86a month ago
On Tuesday I hurt my thumb. Partner threw a cushion at me play fighting and it caught my thumb, pushing it back with force. Immediate pain a...
5 Replies1 Like
EDS and cold weather
carletona month ago
Hello! I’m new and wanted to ask about your experiences with EDS and cold weather, as well as sacroiliac joint dysfunction. I’m looking to c...
EDS Dentist Recommendations (London..Herts..)
I have been having gum problems which could be EDS related or something else connected with Hypermobility disorders. Just wanted to as...
Seeking a Diagnosis (Cont...)
I have recently become aware that I might have EDS after seeing several consultants and connecting the dots. For example, no arthritis...
6 Replies1 Like
Anne20182 months ago
My son ( young adult) has been referred to an OT, he has hEDS & POTS, just wondered how they can help him ? think we’ve been left without a...
leapingmonkey2 months ago
1 Reply2 Likes
happytulip2 months ago
I have a history of SLE, POTs and EDs type 3. When I have a flare up of my conditions, which seems to be ongoing at the moment after havi...
My 4yr old
ChloeV2 months ago
I’m coming to this group with a bit of a wildcard request for help regarding my son with no current diagnosis. Any insight would be greatly ...
laurenamy_p2 months ago
Hi, I’ve just joined as I’m currently under investigation for EDS, but we are unsure what type.
I have a rheumatologist appointment on Tuesda...
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