u/predictablehorse

im aware that this question is asked a lot but all the answers seem to be american or canadian suppliers. ive checked the thread that exists with all the supplies and theres one uk one that sells stainless steel on there so hoping to find answers outside that post.

ive been buying rings from a couple of chinese stores to make jewellery for myself, they all have held up for years now. but im wanting to find somewhere that specifically creates rings for chainmail rather than just craft jumprings to see the quality difference as i am thinking of selling some pieces. i know there is wraithmaille, but theyre constantly sold out so seems an unreliable source. i see chainmail joe rings are available on amazon but they are aluminium and i am hoping for stainless steel.

ive come across VanAlphenStudio on etsy which seems like a shout if anyone has tried them? unsure if their pricing is reasonable because ive been spending so little on rings from 8seasons, pandahall and doreenbeads. im interested to see the quality difference too.

any other good recs?

hi guys. there is 0 provision for hypermobility (HSD or hEDS in my county and also surrounding counties. i am pretty sure i have CCI, and i am really struggling with it. i want to explore going private - i am aware of what the costs might look like, so i want to delve deeper to be able to really map it out.

how on earth do you go about finding a private specialist? when i type in hEDS specialist in my area it comes up with a bunch but it feels so unofficial and risky to just be picking who pops up on google.

does anyone have any advice on what to look out for or any good ways to locate specialist’s privately?

thanks!

hi guys, as the title says.

i am 25, havent worn makeup since i was 21? ive worn eyeliner & mascara perhaps 5 times max in those years. i would love to know more about what makeup is out there, how to wear it in accordance with my facial structure and features and skintype etc. i just want to learn out tinted moisturisers, eyeliner, mascara and how to apply a small bit of shadow.

i love the idea of going to someone who knows what theyre on about, and being able to have things explained to me and be able to see how the products perform and feel and how they should best be applied.

does this still exist that you can go to like boots and get your makeup done? i feel really anxious and a bit embarrassed about it for some reason. can anyone tell me what shops do it (boots is the extent of my cosmetic knowledge) and how to go about it? do you book in or just ask at a counter?

yours sincerely, a girl who just wants to feel a bit more enhanced and put together on some days but has no clue where to start! thank you!!

CW mention of self harm via head banging.

i am not asking for medical advice. just advice on how to phrase it to my doctor. i am in england fyi.

ive spent the past year in and out of the doctors for what has been diagnosed as ME, issues relating to hypermobility and i am being investigated for POTS. i know these are conditions that already create eye rolls and assumptions.

i have a history complex emotional needs, leading to self harm via head banging. from 2024-2025 i probably on a weekly average would bang my head against walls, door frames, grab objects that i would hit against my head, i’d use my fists and just anything in my line of sight. quite often i would be left with bumps on my head, bruises, headaches, i probably gave myself concussion on a few occassions.

i have since been experiencing headaches, they tend to worsen when i strain, cough, sing etc or when i stand. its like a pressure that is above my eyebrows, and at the base of my skull. i also get really sharp throbbing/stabbing pain in random areas of my head.

i finally booked a doctors appointment that is in a week. i dont know if its connected, but i can assume my history of self injury is helpful information or not. im really anxious about how to explain this to my doctor. does anyone have any advice on how to approach this? i have written a list of my symptoms and tried to make it concise. would it be beneficial to start with the history of minor head injuries or say it if its asked?

edit to add: im really well now mentally. i spent 11 years total under mental health services, but have finally found a great combo of meds that help and coping mechanisms and skills via therapy (as well as understanding the concept of self management and realising it was down to me to put the effort in). my episodes went from weekly to less than monthly now. of course i will have ups and downs, but the downs are much less frequent and last far less time, i am able to pull mysef out of it much better :)

hiya. i have HSD (i do suspect its hEDS but waiting until the new diagnostic criteria comes out to see and then make a move with the drs).

my neck/back are my most hypermobile. ive been having issues for a few months now of getting this sharp pain in my neck when i look up, sometimes it shoots down my spine. its quite unpleasant and sometimes makes me gasp because its so sharp.

im assuming its just a nerve getting trapped. im wary about going to the drs bc i am worried i look like a hypercondriac because i have fibromyalgia and ME. they haven’t acknowledged my hypermobility when i bring it up, but a physio and chiropractor confirm it. the chiropractor is hypermobile herself so was knowledgeable but ive stopped seeing her for a while now due to other reasons (nothing shes done).

but its sorta worrying me how often its happening and because its relating to my neck/spine.

has anyone else experienced this? if you went to the drs, how did you explain it? is this just part of hypermobility and having trapped nerves more often because everything moves around more, or was it something else?

just a general ramble requesting some advice.

tldr: any advice for approaching dr about suspected hEDS.

i thought i couldn’t have hEDS because im not that hypermobile. i know a lot of people think hEDS is just extreme hypermobility.

i noticed the other day i had palpules on my feet, and know thats part of the criteria for hEDS and i was like hmm. i went through the diagnostic criteria and i do believe i meet it.

its annoyed me😂 i was more than happy to live with just HSD. my doctors don’t seem bothered about it and wont acknowledge it, but ive had a physio and chiropractor (who has HSD herself) confirm so that was enough for me.

i have ME, fibro, ibs, im being investigated for POTS to understand what type of dysautonomia i have, and am also surprise surprise, autistic and adhd.

its annoyed me because now i realise it may potentially be hEDS i would really like that to be recognised and i would really like to be able to see a professional to understand it. so it feels like another thing ive gotta go to the doctors about and try and battle being taken seriously. ive been lucky with how my doctors have treated me, i just feel like i cant be going back AGAIN and i am worried i am gonna run out of luck.

my plan is to either 1) wait for the new diagnostic criteria update for HSD and hEDS and/or 2) im gonna take photos of all the criteria that can be seen on me, and make a document of why i believe it may be hEDS. i just want to finally find a doctor/specialist where i can get actual correct care. my ME specialist is wonderful im so grateful to live in an area with a specialist service but no one understands the hypermobility aspect of things and how thats impacting me and what i can do to support myself

anyway, ramble over. just wanted to vent my realisation hahah. has anyone got any tips for someone in my position on how best to approach their doctor? i have gone through the diagnostic criteria for other types also and none match

i hope this is the right sort of place to post this.

i have applied for a blue badge due to the unfortunate progression in symptoms of a few chronic illnesses that i live with. this is completely new to me, and i was wondering if anyone has a timeline they could share?

it says applications can take up to 12 weeks to process at the moment - is this the average time or is this just the maximum time its taking?

also, is it common for them to need to do assessments? i am not sure if it is like PIP where it’s rare to not have an assessment.

i don’t mind how long it takes of course, if it takes 12 weeks it takes 12 weeks. i would just love to have more insight into the process and what to expect as it is really new for me. i dont know if it is as brutal as the PIP process is and that there is a high chance of rejection. i supplied a lot of evidence from healthcare professionals to support what i was saying, more than i sent for PIP as i have acquired some new diagnoses and letters as evidence. unsure if i am just scarred by the PIP application process or if i am being realistically anticipatory about the outcome haha

fyi: no, i dont have the right PIP descriptors in order to automatically qualify.

would this make sense that ive been doing fine on my meds 60mg elvanse, 40mg atomoxetine, and in a crash ive become sort of intolerant to specifically my stimulant? even lying down my hr is in the 90s, sometimes 100s. im in the worst crash ive ever experienced, struggling to even be upright (im lucky enough to live with mild ME so this is a big crash for me) my heart is pounding even when lying down. im tremoury too.

my ME specialist thinks i have POTS, but to be experiencing palpitations even when lying down and my hr just not going down is new for me. i had one day of not taking my stimulant and i think it was better. only problem is im mega sensitive to them so one day of not taking them means i have a couple days readjusting.

i tried to take 50mg today to see it it would make a difference and it definitely hasnt. i plan now to just stop taking it for a couple-a few days to see it that helps.

im interested if this is something other people have experienced? that when they crash their body struggles on a stimulant theyve otherwise been alright with?

i have ME, i have been in a bad bout of PEM, completely ballsed up my prescription ordering as a result. wont be able to get it until the 29th june, there is no way around it, but its far too much of a backstory to explain hahah.

i am on 40mg (4 x 10mg tablets) for pain, i recently started taking 30mg a few of days ago to see if it would help with the crash i am in by making the mornings a bit less grim. so i have a few more spare than i would usually. i have 9 tablets to last me until the 29th, i have taken 2 this evening, was gonna take 2 on the 23rd, 24th, then 1 on the 25th 26th 27th.

i am aware that for depression it is prescribed between 50-150mg, and people can increase in 25mg increments. so my question is, am i on a low enough dose that i wont experience withdrawal from taping down too fast, especially as i have seen you can taper down in 25mg increments so i am hoping the dose and taper is not hardcore enough to warrant issues.

or, if the dosage is irrelevant and i will experience withdrawal, is my sad attempt at tapering gonna make any difference? or should i just buckle up for potentially a crap few days. i am aware it takes a few days of there being less in your system/none in your system so im hoping that between that and my small tapering attempt that itll be fine.

the reason i am as concerned as i am is because this crash has been really unpleasant and i am not looking forward to it potentially getting worse🥲 i dont remember the last time ive ever not ordered my meds on time because i order then two weeks early so lots of leeway, so this has been my sign to put a monthly reminder to cover me during the odd time something like this happens again

tia!

hello, i was diagnosed with ME a few months back and my specialist said i experience dysautonomia, specifically orthostatic intolerance, which she has recommended i get assessed for POTS. that will be a long ole process as i am in the UK, so i am attempting to do as much as i can to support my symptoms myself.

i am in a very unpleasant bout of PEM at the moment and my dysautonomia symptoms are the worst theyve ever been for me.

i have been advised to be using electrolytes/salty snacks within the safe limit as it hasnt been identified what the cause of my dysautonomia is. i am really struggling to understand what a safe limit of electrolytes are considering they all have different amounts in them. im not noticing enough of a difference using them to know if i should be drinking them more often or at what times.

im dealing with a lot of dizziness, light headness and just generally not tolerating being anything other than horizontal at the moment. from an ME perspective i am dealing with headaches, sore throat, generally feeling like i have the flu (despite not having it), achey, fatigued, weak, very much that “someone has poisoned me and then hit me with a truck to seal the deal” type feeling.

does anyone have any tips or must haves for someone new to managing this? thinking of getting some compression socks, i am aware that abdominal compression/compression of the lower half of the body is more beneficial, but i need to ease myself into it. i am autistic so its either gonna be the best feeling in the world, or the worst😂

apologies this is so long. i got a lot angrier whilst typing this out and so it turned into quite a rant, but it has been helpful. big credit to anyone who actually reads it!

its fathers day in the UK, i have never missed seeing my family on this day, aside from one year when i was travelling for a year. i have mild ME, i have been able to work part time and still socialise occasionally (albeit with consequences). i have been in the worst crash ive ever experienced, to which if this becomes my baseline i believe it would be classed as moderate. i am currently signed off work because of it, and have been able to do little else. i went to a bbq at friends yesterday after a week of being off and spending my time resting and thought it might be good to get out the house, and also because it did feel like a social obligation, i wasn’t thinking about the next day and honestly assumed id be fine. im not good at saying no, im terrible at seeing consequences too, i struggle with emotional permanence so sorta forget what the consequences feel like and if i am feeling less shit, i struggle to imagine how i would feel worse. im very good at downplaying my struggles and its been especially difficult because this is uncharted territory for me, so im still thinking in the metric of my usual baseline.

unfortunately the consequences have been not great and today i am forced to miss seeing my dad today on fathers day. it genuinely isnt safe for me to drive and its an hour journey for me. anything other than being horizontal is difficult, dysautonomia symptoms are through the roof.

i am still convincing myself i am being dramatic, overreacting, not making the effort. but i am mostly just absolutely devastated. i am angry i wasted spoons on a bbq with friends that honestly was absolutely not worth the consequences. this sounds a bit harsh, but it was supposed to be a friends joint bday bbq, it has been labelled as such for months, but somehow ended up being the kid of one of the friends kids bday party (more context, i dont massively know one of the people whose joint bday it was, i class her as a friend bc shes in the same friendship group, but shes more of an acquaintance/mutual friend, so i especially dont know her child). i do not really like kids either, and would not have attended had i known it was gonna be swarming with young kids, to which i knew absolutely none of them. i really thought it was gonna be all people i knew, so for it to be not only loud screaming kids + a lot of people i didnt know, it was way more taxing than expected. i think even the friend whose joint bday celebration it was was incredibly confused by it somehow becoming a kids bday celebration.

anyway, im just hugely grieving my existence today. its a huge deal for me to be missing fathers day, and im so incredibly angry that i have wasted my spoons yesterday over an event i actively didnt enjoy. i had to spend some of it sat in the car with the seat reclined and aircon blasting. its definitely been the final straw for me on saying yes to things i dont 110% want to attend. i feel so selfish, i was trying to show up to maintain relationships, as well as hoping doing something nice would be good for me, but in not being selfish ive lost out big time. ive spent months not being selfish, thats why i am now on sick leave. my job means the world to me and in attempting to appease others i may lose that. im really 100% ready to be as selfish as i need to be because i have become so aware of what i will lose if i am not. im sick of suffering for the sake of pleasing others and making their lives easier.

i have so much grief, anger, upset, frustration just bubbling round me and have been crying my eyes out, i really just needed somewhere to vent and hopefully not be judged for the harshness towards yesterdays bbq, its just hard to take lightly when the consequences are so vast. it has been a hugely devastating reality that i cant just keep pushing through or treating PEM like its just a transactional consequence to get through, like “i’ll just do this and then deal with the consequence then move on like normal” that im actively harming myself and making myself more unwell. ive taken the privilege of being mild for granted by not comprehending the seriousness of it because i havent had to, until now. i keep telling myself im fine and trying to blame it on everything else other than the fact that i am chronically ill and this is real.

again, huge appreciation if this is read by anyone, i truly needed to just scream into the ether

i am genuinely wanting to understand. i have seen it a few times now that to rent a mobility scooter you have to pay, it is not a refundable deposit, it is just the cost to use it. ive seen £25 and £35.

i understand the company needs to make money and cover repairs, services, electricity etc, but these prices seem quite steep on top of already paying for a ticket for the event/to enter.

sure, consession prices exist, free carer tickets for those who qualify. but in my opinion this does not equal enough to make it fair.

it becomes quite considerably more expensive to attend somewhere because of needing to use aids a lot of us dont have a choice in.

i guess also because i have been to places where they are free, i dont understand what would warrant a price of £35 when some places offer them for free or a refundable deposit.

does anyone have any insight to be able to explain it? i dont know if i am just hugely missing something. i just cant comprehend how £35 to rent a mobility scooter, and given the event even people with manual and power wheelchairs may have to rent them too as it is a festival with some tricky terrain so a lot of chairs just wont be able to manage on the terrain (a few inclines, uneven field terrain, gravelly areas).

i am new to the world of mobility aids, its not even been a year for me, so is this just the harsh reality of just how unfair being disabled is as opposed to there being any type of reason that might soften the blow🥲

how do you find compression socks help your symptoms/what symptoms do they help? i see them advertised for “fatigue” and im intrigued how it may help. i struggle with orthostatic intolerance & dysautonomia as a whole too (labelled by my ME specialist who also queried POTS, this is next on the list to investigate). i dont notice blood pooling but i also have not ever looked to see if it happens upon standing, but i know they can support that and i feel like circulation is what theyre most commonly known to help, but is there anything else?

i hope the title is a sufficient trigger warning. this is a bit of an odd post, i just really wanted somewhere to share this sorta realisation. sincerest apologies if this is not allowed.

because of the topic i wanted to add some helplines, i wish i could cover the whole world. theyll be at the bottom of this post.

anyway, the post: i have a history of complex mental health struggles, which lead to quite a lot of overdoses as a form of self injury and some attempts on my life.

i know that PEM can sometimes be referred to as feeling like you have been poisoned. this is how i refer to it myself. i recently made the realisation that PEM for me feels really similar to the feeling of overdosing. its been a really odd thing to consider, but its literally in some moments exactly how i have felt when i have been sat in the aftermath of taking an overdose.

so we truly are not wrong when we say it feels like we are being poisoned. i cant even describe the exact symptoms, but i guess it really does feel like your body is literally shutting down.

im curious to see if anyone else who has had the unfortunate experience of knowing what an OD feels like can relate too maybe? its been a really isolating realisation because in my life theres just absolutely no one to talk to about it who might relate.

mental health/self injury/suicide/crisis 24/7 helplines:

UK
- samaritans uk 116 123
- nhs 111, option 2 for mental health support
- papyrus 0300 102 2470 or text HOPE to 88247 (note this is for under 35s)
- text SHOUT to 85258
- link to other helplines: https://www.mind.org.uk/information-support/guides-to-support-and-services/seeking-help-for-a-mental-health-problem/mental-health-helplines/

US
- suicide and crisis lifeline 988
- text HOME to 741741 for crisis text line

Australia:
- lifeline 13 11 14
- suicide callback service 1300 659 467

India:
- aasra +91 022 2754 6669
- vandrevala foundation +91 9999 666 555

link to an international helpline directory: https://findahelpline.com

i am aware that the best course of action is building up muscle in the back to support a hypermobile back, however i live with ME/CFS and honestly exercise is off the cards right now. i do the ywt exercise but im struggling with being able to progressively overload it enough to actually see any difference in strength due to the fatigue and weakness i experience.

anyway, has anyone found back braces to be successful in supporting pain? its the whole of my back down the middle plus the muscles down the side of my spine, and my neck right where it joins my shoulders. my posture is absolutely horrific due to being hypermobile and thats definitely contributing to the neck pain.

i was wondering if a back brace might be helpful? i do fear relying on it and making my muscles weaker, but this pain is getting unmanageable. i work at a desk most of the time when i am working (3 days a week) which does not help at all!

i am wondering if a back brace in conjunction with some gentle body weight exercises (continuing the ywt exercise) might be of any help.

i just wanted to make this post as its one i wouldve benefitted from when i was undiagnosed but suspecting and on the waitlist for assessment.

i spent a long time with the mindset of “oh i will start taking it seriously if i am diagnosed - it still might not be ME”. i felt i wasn’t allowed to treat myself as having ME because i didn’t have an official diagnosis. i live with it mildly but flares/crashes/PEM land me in the moderate category sometimes. because of me having mild ME, i felt that i was honestly insulting people by acting as if i had it when i wasn’t diagnosed as so many people have it so much worse.

this post is just to say: if you think you have ME, either are waiting for an assessment, your doctors are dismissive, you cannot access healthcare, whatever - treat it like it is ME. i wish i had taken it more seriously. my argument was “well if it turns out it isn’t ME i don’t want to miss out on living and doing things”. it was honestly entirely routed in denial and invalidating myself/internalised ableism that it couldn’t be that bad and you are just deconditioning yourself so need to keep moving, or im just vitamin deficient.

i have definitely gotten worse due to it, not wildly, but noticeably and uncomfortably. thats not to say it will happen to you, but thats my regret. i was so fixated on having the official label to validate myself.

worst case - you treat your life as if you do have it, to then find out you dont. you can make up for that lost time. but you can’t make up the time if you do have it and have risked lowering your baseline or crashing often and feeling really unwell. id have rather of spent 6 months trying to pace and rest than 6 months of memories and experiences where i felt horrific and couldn’t enjoy myself during, with consequences after.

i sit here feeling lucky that the consequences of pushing through at the point i suspected ME (i say this because i didnt know/suspect before that so couldn’t have done anything) have not tipped me further down the scale of severity. i am in an crash which i fear may be a new baseline as it has been slowly progressing, and may leave me mild-moderate vs mild. but that is a small cost vs the reality i may have experienced.

so in conclusion: stop pushing through for the sake of not having a label. do not wait for the diagnosis to start taking it seriously. you are valid and you deserve to start taking your symptoms seriously. (of course there is nuance here as it can look like ME but be other things, but this is more in the context of awaiting an assessment, bloods have been done and are fine, not deficient in anything or if you are you are supplementing consistently etc, doctors have exhausted every option but are dismissive or there is no ME service in your area and your doctor doesn’t seem to care to diagnose themselves, or doesn’t know anything about it!)

God I hope this makes sense I am terrible for waffling and horrible formatting.

For context - I am have HSD, ME/CFS and dysautonomia (which might be POTS).

So I take a cocktail of supplements - 2 x 1000micrograms b12 sublingual, magnesium glycinate, methylfolate, zinc (with copper), and a b complex.

I take all of these as I struggle with b12 deficiency & so I am permanently having to supplement bc it just drops the second I stop. Then I take the rest as co-factors to support absorption.

I recently started taking iron bisglycinate (with vit C) because my ferritin was like 25ish so wasn’t optimal and I was getting folate confused with ferritin/iron. I have been taking it for maybe a week. I have actually also recently in that similar timeframe started taking Zinc properly - I was taking it on an empty stomach which was causing stomach pain/nausea so I wasn’t taking it consistently as it made me feel grim. So within the same week I am taking Zinc & Iron Bisglycinate regularly. All of the rest of my supplements/meds I do take consistently and never miss them.

My dysautonomia has gone through the roof - hot flushes, high heart rate, really shakey, weakness, dizzy. It has never been this bad. I questioned if it was low blood sugar but having a snack during these times doesn’t help.

Is there a chance that I am taking too much iron & thats what is causing this? I don’t know if I am just unfortunately getting poorlier on the chronic illness side for things because I am not resting as I should, or if its due to the new supplement situation. Or could it be vit D deficiency? My GP surgery doesn’t routinely test vit D so no clue what thats up to, I can assume its probably not optimal as nothing else is, I bought a spray which I was using wrong (spraying too little times) and then just stopped using a while ago now).

More context - AM meds is 60mg Elvanse (this is not effecting my HR or BP), magnesium, iron bisglycinate & 1000microgram b12.

PM meds - 30mg amitriptilyne, 50mg quetiapine, zinc, b complex, methylfolate & microgynon.

My prescribed meds have been happy and settled for a while.

Would appreciate some insight! I am going to have a chat with my Dr too but wondered if I could fill some blanks during that time :)