u/Additional_Bid_7688

Hi all!

Recently I had went to my GP because I’ve been having pretty bad joint pains, especially in my wrists/ankles/knees. Previously a few years ago a doctor did ask me about my knees as she noticed they bend back quite a bit and mentioned Hypermobility and I didn’t think much of it at the time - because of these pains i looked it up recently and realised it actually made sense and booked an appointment to get seen and fully checked.

Anyways, the doctor I saw said Hypermobility and scored me 9/9 on the scale. She heard my knees/wrists/ankles clicking, clunking, crunching etc and I saw in the notes only today that she suspected eds.

I only looked at that today because yesterday I had an appointment with an occupational therapist who said that a lot of my symptoms matches eds and to get it checked out.

I don’t really know much about the condition if I’m honest, I’ve been looking on Google - the nhs website and TikTok to try and learn about it as I’m really unsure but if anyone who has it could help it would be amazing ☺️

My history:
(22F)
I have diagnosed adenomyosis, Dissociative seizures (FND), Hypermobility and suspected endometriosis.
Im unsure if I may have IBS but will talk to the doctor about that.
I bruise easily, literally get bruises all over my legs and I haven’t even done anything or hit into anything they just appear?? I never thought much of it but I’ve had it my whole life.
I’m also quite sensitive the smallest touches hurt like a simple finger being pushed into me can hurt and don’t know if that’s also linked?

I know there’s multiple types of eds and it would be great if anyone has similar symptoms could say which one they have and how they got diagnosed? It says online to be referred to a specialist and then it says some can be diagnosed through the gp so I’m a bit confused..

My oc said that she’s seen many people with eds that struggle with gynaecological conditions/problems as well and that it may be worth talking to a doctor about it.

Thank you!!

Hi all,

I’m 22F with Adenomyosis, Dissociative Seizures (FND), Hypermobility and suspected endometriosis and IBS.

I’ve recently decided to buy an active wheelchair to help with my pain management and mobility.
I originally planned to buy it because I’ve got a holiday coming up in a place that has tons of hills and I know I won’t be able to handle it without one, but found that once I used it my pain was better than when I would be walking with a walking stick and decided that for longer distances I’d use it. For example day trips or if I wanted to get out the house for some fresh air etc.

My family kept going on and on about how my original chair (a hospital like self propelling wheelchair) wouldn’t fit in the car for the holiday so I decided to get a new chair because of that. But once I got my new chair it was then “try to avoid using it on the holiday” and I asked why and they were concerned my other family members would be judgemental and make fun of me for using it. I quickly realised that my original one probably could’ve fit in the car, they just didn’t want me to take one because of how others will act.

I’m quite upset about this, some of my family are accepting and understanding and will help out - but then there’s other family members that think I’m faking my FND and others thinking I just need to crack on and suck it up and get a job “like everyone else”.

I’m getting really nervous about this holiday, I want to have fun but I also don’t want the unnecessary comments and jokes about my health and my mobility aids.

I don’t know what to do anymore, I can’t walk up these hills without being in severe pain and would have leg weakness etc which is why I got this wheelchair in the first place.

I didn’t chose for this to happen, and no matter how much I try to explain to these family members they just can’t seem to believe me and I get so tired having to explain myself every time over and over again.

It’s exhausting and I’m starting to become more stressed than excited for this holiday and that makes me sad 😔

If anyone’s got any advice on how to handle this situation it’ll be greatly appreciated, I’m starting to get really irritated and coming off as quite rude because I’m getting tired of having to people please others because they can’t seem to wrap their head around on the fact that I’m not healthy.

Hi all, I’ve got a new quickie argon 2 and I’ve been spending the past two days practicing with it and I’ve already felt that my fingers are starting to get blisters.

I’ve ordered push rim covers but they won’t be here for another 2-3 weeks.
Is there any tips to help with this?

- UPDATE -

Thank you everyone for the help it’s been really helpful reading all the comments regarding the wheelchair and I’ve decided to invest in a active manual wheelchair instead and go to another showroom and just do that on finance ☺️
Shocking how a ‘self propel wheelchair’ isn’t actually self propelling..

Thanks again!

Any other advice or tips regarding general wheelchair knowledge/experiences would be great!

——

Hi all,

I’ve got adenomyosis, Dissociative seizures (FND), hypermobility (maybe HEDS unsure??) and suspected endometriosis.

This weekend im going to my first showroom to look at getting a self propelled wheelchair. I don’t have much money and it would have to be paid through direct debit/monthly installments but hoping to find one that’ll work for me despite my low budget.

I already use a walking stick but it doesn’t help for long journeys and I’m starting to get quite uncomfortable walking because of my pain.

Any advice for a beginner would be greatly appreciated! I’m nervous to use it in public put saw one online at the showroom I’m going to that is pink and I’ve started feeling quite excited about having one that’s pink and I can decorate! As well as seeing videos online on how much they have made people feel more confident.

I’m looking at getting some stokes and push rim covers! (Probably not all at once as they’re expensive) but yeah!

If anyone knows of any replacements that I could attach to put my feet on that would be great as I’ve heard online the attachment to put your feet on is quite heavy and they look quite bulky.
(Trying to think of ways to make the wheelchair as light as possible)

Thank you so much!
For reference I am looking at getting the
I-Go Candi Self Propelled Wheelchair

Thank you!! ☺️

Hi all,

I’ve recently been diagnosed with hypermobility (scored 9 in the test) and I’ve had issues regarding my knees, wrists and ankles for a long time.

My wrists click, crunch, pop etc when I twist it round in circles - same with my ankles.
It’s gotten quite painful if I don’t do it, yet when I do it I still have pain.
My knees lock and click quite often and I’ve really been struggling with pain recently.

I put all my weight on one wrist as I tried to lift myself up on something a few days ago and it’s been really painful since, I put it in a brace but that made the pain worse ?? So I had to take it off.

The past few nights I’ve really struggled sleeping, my ankles hurt like crazy no matter how I sleep. Same with my wrist that I put weight on and my knees.

I don’t know what to do. I feel like I’m going insane. My legs really hurt and it’s starting to hurt to walk as well. Been trying physio but it keeps causing my joints to click more and it just hurts :(

Any advice on what I can do to help??

I also have other conditions such as
Adenomyosis, Dissociative seizures (FND), Migraines and suspected endometriosis. These conditions already affect my mobility so I don’t really want another condition to make my mobility even worse.

Writing this at 1am struggling to sleep because of the pain and also getting pins and needles in said wrist/hand.

I wonder if I may have HEDS? I’ve heard about it but I haven’t done much research so I’m unsure.

Thank you!!

Hi everyone, I’m looking for some advice/help. My cat 12M has been suffering from a possible nasal blockage/infection. He’s currently on Day 3 of Synulox but the vet is concerned there is a tumour or a physical blockage that needs a rhinoscopy.

I just received the quote and it’s approximately £1,600. I don’t have insurance, and as much as I want to help him, I simply cannot afford this amount upfront.

The current situation:
• He is sneezing thick green snot and occasional pink-tinted mucus - this is only coming from his right nostril and not both which is why the vet thinks this is more likely a blockage/tumour instead of cat flu.
• He is still eating, asking for treats, and has okay energy
• I’m currently managing his symptoms with steam sessions and cleaning his nose daily.
• I am giving him the synulox 2x a day every 12 hours.

I just wanted to see if there are any UK-based charities (like PDSA or Blue Cross) that help with specialist surgery costs if you aren't on specific benefits? I am on PIP, UC and New style ESA if that helps for anyone.

Does anyone know of "low-cost" vets in the [South-East UK] that might be cheaper for diagnostics than a standard private clinic?

Has anyone successfully negotiated a long-term payment plan for a bill this size?

Are there any "Plan B" treatments (like steroids) that might help manage a nasal tumour or blockage if surgery is truly impossible?

Any advice on how to lower this cost or find support would mean the world - thank you!! ☺️

Hi all, I’ve been experiencing awful migraines for about the last 3 weeks or so and decided to contact my doctor.

History:
I have Dissociative seizures (FND), Adenomyosis, Suspected endometriosis, hypermobility, anxiety and depression. May also have IBS - currently looking into this.

I am regularly taking paracetamol, codeine, naproxen, duloxetine, propranolol and omeprazole to manage my issues.

—

My doctor believes that I’ve been experiencing these headaches because of medication overuse as I’m taking these nearly every day.

He has suggested I stop taking my painkillers and naproxen for awhile to give my body time to reset and just take Sumatriptan to help with my migraine attacks.

However I don’t know how I’m going to manage not taking my meds for weeks on end.
I need anti inflammatories to manage my endo/adeno and need some sort of painkillers for my pain, joint pain, nerve pain etc.

Does anyone have any suggestions on things that can help that aren’t medication related?

Thank you!! ☺️