u/mod-wolves

Hi all,

Diagnosed hEDS last year with an unusual presentation. Naturally developed a *lot* of leg muscle and tendon strength in previously very hypermobile areas, especially my wrists. My tendons in my wrist are extremely prominent and strong to the point my hands are curling inwards, I can no longer straighten my left hand at all. I get weird pulsing pains and 'static shock' sensations all up my tendons and fingers/wrist, especially when carrying things, writing, typing, applying pressure etc. to the point my fine motor skills are all but gone.

This is pretty much the same situation across my whole body; what used to be hypermobile is now overly muscular/toned and extremely restricted/tight. I'm actively losing beighton scale points as each year goes by from this. I don't work out or exercise at all, and never have done. This has just happened from years of walking, carrying and such.

I can't access physio in my area without paying extreme private prices, but have heard botox in the tendon is a quick and easy fix to this specific issue. I kept going to the doctors about it but they always see the blood pooling from POTS as the issue, even with clear demonstration and knowledge that the two conditions are separate. I've been put on a waiting list for cardiology and given yet another ECG but the NHS have never actually followed up with anything. They totally ignore any private specialist input and constantly put me back at square one.

Has anyone here had any experience with this kind of injection? I'd obviously be going to a reputable professional, but the prices for repeat physio are ridiculous.

Hi all! Working on a visual project and looking for areas around GM with a liminal space/Backrooms esque vibe. Hallways, corridors, tunnels and such, or anything with a uniquely unsettling energy.

Preferably public spaces where people will not mind photos or filming of architecture (not busy spaces like shopping centers). Thank you!

Hi all,

I spent most of yesterday in a studio with proper fitted AC and noticed I felt a lot better, as soon as I got home I started having much worse symptoms. It's not an option for me to have proper AC installed as I'm broke and in a rental, so I'm looking for advice. My flat was built in 1909 or so and was originally an attic, and traps heat. I'm in the UK and it's a very typical building in the North designed to endure colder winters than we have now.

I've heard the evaporative 'swamp cooler' ones have a high risk of mould, and I already have a dehumidifier going pretty constantly as I'm very sensitive to damp environments. I think my best option is one with a window hose type of attachment, but I'm struggling to find one that fits on my window.

It's a costly investment, and wanted to see if anyone had any luck with one of these units or any suggestions. I've also read some stuff about AC affecting BP, and mine swings between high and low on any given day. I've only just seen a cardiologist and I'm awaiting further tests and support, so I'm trying to make things as livable as I can right now.

Thanks!!

Hi all,

I was diagnosed last summer but symptomatic for 15 years or more. Born with hEDS so it's likely genetic rather than triggered by something. I've been focusing on hydration and electrolytes since 2021 (5 years prior to diagnosis due to weird episodes my famliy thought was dehydration) and have basically been forced by my body to rest. For the last 2 years I've stayed with family during this part of the year due to my symptoms being so bad but this year it's not possible.

I posted a while ago about my issues with the NHS, and my family are supporting me with accessing private care, although I'm still waiting to see a specialist. One of the weird things about my POTS is that my blood pooling is constant 95% of the time, worse in my hands but present in my feet too basically every day for well over a decade. I was told by GPs it was to do with my skin condition, but after 2+ years of no symptoms due to dietary changes nothing has improved. I've tried compression gloves which did nothing (and also further limited movement and dexterity in my hands) and compression socks leave itchy indents in my skin and don't really seem to help. I briefly tried abdominal compression but found it the worst of all, and couldn't move properly. I also found it made my back pain worse. If it helped my symptoms I could grin and bear it, but I don't ever notice a marked improvement.

I was titrated on another ADHD med in December but had to stop after a month due to extreme side effects, however I kept the BP monitor. I tried using it during a POTS flare to track my pulse and found that my BP is consistently stage 2 hypotension during a flare, but returns to normal once I rest. This has even confused me with the salt advice, as now I don't know if I'm eating too much of it. Doing research my symptoms are very consistent with hyperadrenergic POTS, and some of the specifics like pupil dilation problems have been present almost my whole life.

One of the things that has cemented this for me is my adverse reactions to medication that affects norepinephrine in some way. I'm diagnosed with ADHD, but struggle with extreme hyperfocus and hypervigilance, just with no reward system for actually completing tasks. I have distinct memories of the same hot-cold-sweat-shivers, random goosebumps and lights getting brighter from physical activity going back to when I was 10 or younger. After I was put on & came off SSRIs I struggled with extreme sweating, but now I can barely sweat at all. Over the years, it's taken less and less activity to get the same symptoms.

Is anyone effectively managing their POTS without compression? I've tried everything I can think of, but with no significant reduction in symptoms and an added layer of discomfort and impairment, I can't imagine being able to wear these things every day. I'll likely report back with what I find with the cardiologist, but I'm unusure when the appointment will be.

Aside from compression, I'm doing everything I can to the best of my knowledge. I've increased my salt intake and stay as hydrated as possible, rest as much as I'm physically able without slipping into self neglect, and try to only leave the house when it gets dark as this massively increases how long I can be outside. I've also elevated the head of my bed. If there are any pieces of standaed advice that I've missed please let me know.

Thanks for reading!

Hi!

I live in England and was diagnosed with POTS/Autonomic Dysfunction alongside hEDS last summer by a reputable private doctor in London. I was provided with a care plan, however when I presented this to my GP at the time I was told to go private via POTS UK if I wanted any further help.

Almost a year later and things are still getting worse, the blood pooling in my hands usually gets better by this point in the year but I've never had more trouble with them. Compression gloves have done nothing and just seem to force the blood into my fingertips; when I take them off my hands are just the same as before.

I made an appointment with my GP as my hands are getting worse by the month, and I'm not even sure anymore what's causing what. I've been referred to physiotherapy, but I'm hesitant to start as a hypermobile family member started having several severe falls that destroyed her ankles after attending physio for her knees/gait.

My GP spent a fair amount of time poking my hands and watching them go pale and fill back up, and then referred me for an ECG. I had one privately in December which showed I have sinus arrythmia, but was otherwise normal and I was cleared to go back on ADHD meds (I was only on them a month before stopping again anyway).

I've now been referred for a 24 hour ECG, but I'm very confused. Since I'm already diagnosed and using various coping strategies already, do I have to stop these in order for the results to be accurate? I keep waking up with an absolutely thumping pulse and huge adrenaline for no reason, and even bending down to pick my cat up will send my heart rate crazy. It's gotten much hotter the past week and my summer symptoms are already in.

Lastly, does anyone get visual issues? My vision will white out for 2-3 seconds and go 'photo negative' when I get symptoms the worst, usually if bending or if something fast moves past my vision. I have double vision even with one eye shut, and get weird orby floating distortions from lights, but I'm having a hard time getting them taken seriously. Could these be connected to POTS or Autonomic Dysfunction? I'm only diagnosed with astigmatism and have the charactaristic halo blur thing, but this is distinctly different and even continues with my eyes closed.

Thanks!!