u/MotherObjective6998

I woke up around 7am and rolled over so I was facing the wall, which was very close. It was all I could see and my eyes were open when suddenly my entire body froze up. It felt less like numb paralysis and more like someone made all my muscles freeze in place. I couldn't even move my eyes. As I stared at the wall I felt a vibrating in my skull and buzzing sound and I felt like I was in danger. On the wall were geometric shapes flowing and morphing, in a sort of chromatic pale rainbow colour. The geometric shapes felt very significant at the time but when I snapped out of it I couldn't explain why.

This is the only time I've had sleep paralysis and I've struggled to find accounts mentioning geometric shapes, does anyone have a similar experience?

This is one of two paranormal experiences I had in this house. I'm interested in people's opinions, whether they want to debunk it or have a paranormal explanation. I do believe firmly in the paranormal but that doesn't mean my experiences were definitely in that category.

This was back in August 2023, I was living in my grandparents victorian house in NE England. I was in the 'playroom' (essentially a study) one afternoon working on my university project on the computer. I'm pretty sure I had my headphones on as I usually listen to music when writing. That room has always had a different energy than the rest of the house- the whole house is gloomy and old but my grandmother is a Mormon and has made the house her spiritual safe haven, so I've never felt any paranormal vibes, other than a melancholy, quiet atmosphere to the playroom.

Anyway, as I was sitting there writing, I felt someone jab me in the ribs. It was on the left side, more towards the back than the front and about halfway up. It felt exactly like somebody had jabbed me with a finger. Bearing in mind, I am now chronically ill and have experienced many muscle spasms, twinges and the like, it did not feel like that at all. It was very external. I ripped off my headphones and spun around in the chair thinking it was one of my grandparents surely, but no one was there. My grandparents are quite old and so I doubt either was able to sneak in, poke me and then run away without me hearing, and I can't imagine why they would do that. But I was still sure it had to be one of them as no one else was in the house.

I went through to the kitchen (down a long corridor) and my grandmother was cooking dinner. I asked her if my grandfather was downstairs and she said he was upstairs napping. I told her something jabbed me in the side and she inevitably asked if it was a muscle twinge, which I am adamant it was not. Once she was sure of the situation she went into the playroom and verbally banished the spirit, which I was quite annoyed about, but what did I expect telling my Mormon grandmacthere's what she interpreted as a demon in the house. It didn't feel malicious to me and I wasn't scared, only startled. I did try to counteract my grandmothers banishing but as I am not the owner of the house I guess I don't have that type of spiritual clout.

I stayed working in the playroom until very late at night in hopes of interacting with the spirit again, but the atnosphere felt much more neutral and empty than before so I gave up. The other paranormal experience was a type of sleep paralysis/hallucination I've never found a similar account of online or from other people, I can share if anyone is curious. It happened in the same house a year earlier which is why I'm mentioning it.

i wear compression socks because I lie in bed most of the day (ME/CFS) and also for when I do stand up as I have dysautonomia. I have hEDS dx but am waiting for my genetic test results to check for Marfans, Loeys-Dietz and vEDS.

i don't wear them all the time, bur most days for a few hours at least. The problem is when I am wearing them I can feel them pulling my foot down out of my ankle joint. I have to keep my feet flexed constantly to avoid this, and I have some pretty bad petechiae around my inner ankle/the top of my foot.

The compression socks otherwise fit normally and work well, I'm just wondering if anyone else has experienced this or knows how to get around it?

I have a diagnosis of hEDS but awaiting genetic testing to rule out other subtypes due to atypical presentation.

Today I had an endoscopy and a small 2cm hiatal hernia of the oesophagus was found. I was pretty sure there was something wrong with my oesophagus due to pills getting stuck at the bottom of it, but I don't have GERD/acid reflux and it doesn't explain all of my GI symptoms. Gastroparesis has been suspected by my gastroenterologist due to feeling full quickly, nausea, vomiting, lack of appetite, weight loss and regularly feeling like food is still in my stomach the next morning when I wake up. I also have these symptoms with liquids, not just solids, so I am thinking I probably still have gastroparesis as a small hernia shouldn't affect liquids?

A hernia explains some of these symptoms but I'm wondering if people with hernias/gastroparesis could talk about their symptoms as I have to wait 4-6 weeks to follow up with my doctor and my symptoms are very severe despite the hernia being small. Is it possible/likely that I have a hernia AND gastroparesis? I will probably get a GES at some point later this year to test for it but I am very confused. I'm wondering if other people have had both a hernia and GP.

If anyone has experience with either of these conditions it would be helpful to hear your experience and symptoms!

Can I bring a cane with me to the festival? I know there is a separate viewing area for people with mobility aids but I am wondering if I can bring my cane to the main area? I don't see any specific information about this on the website!

I have a hEDS diagnosis but am waiting to have vEDS ruled out as I have many minor criteria for it. I have an endoscopy scheduled for comorbid issues. The gastroenterologist did not mention any increased risk of perforation during the procedure and is aware of my diagnosis and possible vEDS situation.

However if anyone knows whether this increases my risk of stomach perforation or has any info/advice/anecdotes, this would be helpful!

I'm struggling to prevent further weight loss and am already underweight. I have some Huel meal replacement drinks and although they are easier to manage than solid food, they're only 400 cals and expensive, and I still get symptoms like quickly becoming full and discomfort and nausea so it's not really helping me to increase my caloric intake much.

Does anyone find nutrition drinks helpful? I'm worried to lose more weight but I just can't get more than 1200-1400 calories a day the last few months and it's scaring me. Any recommendations for higher calorie drinks or other solutions would be welcome. I haven't discussed tube feeding with my gastroenterologist as I am really reluctant to do it unless I have no other choice. I imagine they also feel the same about providing it to me.

OAS (north American brand) do lightweight motorised wheelchairs which seem perfect for my mobility issues, but they don't ship to Europe. Does anyone know of wheelchair companies that have similar wheelchairs with UK shipping? Thank you!

I was recently diagnosed with hEDS but at my next appointment the specialist admitted she isn't sure I don't have vEDS (i have some minor criteria) and agreed to try and rule it out with genetic testing, but said referrals are often rejected and that wait times can be long. I could afford to do it privately and would prefer to for my mental health as i'm very stressed about the possibility of having vEDS.

Can anyone from the UK recommend a private genetic testing company?

I am waiting to be diagnosed with endo so its not comfirmed, but PCOS has been ruled out. I'm not on the pill (never have been) and there is zero possibility of me being pregnant.

Since the beginning of the year my period stops on day 3-4 and then restarts after 24-48 hours. Before my most recent period I had light spotting for two days, which I've never had before either. I'm now on day 12 of cycle after that period and experiencing spotting heavy enough to need a tampon. It's brown which suggests it's leftover from my period, which was unusually light this month.

I have become underweight this year due to health issues and have had high SHBG for at least the last 8 months, so it's possible these things are influencing it too? I can't see a gynecologist about it until I get to the top of the waitlist so im hoping someone here has had a similar experience and might know what's causing it.

I got diagnosed today with hEDS. Doctor was very dismissive and told me I don't have ME/CFS (I have been diagnosed with this for 7 years and most definitely do have it), accused me of being anorexic rather than having symptoms of gastroparesis, told me I might have mitral valve prolapse but that I should ask my GP for an echo and it's up to them if they want to check for it, diagnosed me with hEDS and gave me a leaflet on hypermobility (with no mention of EDS inside), then ushered me out the door. No explanation of what hEDS actually is or how I can manage my condition, just got told to do physio exercises, and when I explained that I can't because ME/CFS prevents me from exercising, she rolled her eyes and said "well that's what I'm recommending". I left crying and feel very scared by everything she said about potential heart issues and as much as I've researched EDS online it doesn't really compare to having a professional walk you through what the condition means. She seemed very suspicious of me and kept interrupting the answers i gave to her questions. Normally I am good at advocating for myself in appointments but I've never had someone treat me so coldly before.

does anyone know what I should do? I don't know how to get help with any of this and am not sure what the point of the diagnosis is if I still don't understand the condition or have any viable treatment options?

I was recently diagnosed with hEDS, no genetic testing. I meet the criteria strongly but I have other symptoms and comorbidities associated with vEDS. I have talipes equinovarus, varicose veins (developed in teen years), and just showing the doctor how stretchy the skin on my forearm is created a stretch mark there. My skin is not extremely fragile so I doubt cEDS.

Should I push for genetic testing to rule out vEDS? It seems a very serious diagnosis to risk missing and would put my mind at ease. Does anyone here with hEDS know if talipes equinovarus and varicos veins can be common in this EDS type too?