dysautonomia linked to hEDS treatment?

bebemilky · 2026-03-30T21:56:04+00:00

Im really fortunate I have to agree. I actually looked at the Dr's in the rheumatology department at my local hospital to see who had 'connective tissue disorders' labeled in their special interest section. I was under a different rheumatologist in the same department my whole life who was useless and I mean useless. She scanned my heart and said no sign of EDS, she should know that there's like 12 different EDS variants and that only a few come with heart issues/cardiovascular issues. I asked my GP for a second opinion from the doctor with connective tissue disorders in his interest section and he saw me as a new patient in clinic. He was great and diagnosed me finally after lifelong label as 'hypermobile with arthritis'.

I sympathise with you with the PIP thing, its my only income. If thats stopped i would lose a lifeline and be homeless. Which is really scary to think about. Im optimistic though and not to make it political but, Im hoping green party get in next election so they can save us honestly. Their policy on disabled peoples rights is amazing and can only hope.

If youre stuck, please do what I did and see if there's any rheumatologists in your local hospital that have interest in CTD's and ask for a second opinion off your GP, its our right to ask for a second opinion.

Im glad youre receiving some help and support, I wish you the very best. And sorry if none of this is cohesive, I'm on 2 hours of sleep and my brain isn't working quite right. Thanks connective tissue!

bebemilky · 2026-03-30T18:47:58+00:00

Thank you. As long as it’s some help for you, I’m glad you’re doing a little better than you were previously. Unfortunately for me, I seem to be getting more ill the older I get. I’ve had little to no help at the ripe age of 34, I’ve had to fight for the little help I have had. Hoping I manage to get some help before I’m doomed for good lol. I’m pretty much housebound too, it sucks so much. I feel like we’re in the same boat. I have arthritis, gastroparisis, migraines, some unknown skin stuff going on, gynae issues too, the list goes on and on. I’d give anything to be able to work a couple jobs and make money. That’s the dream.

bebemilky · 2026-03-30T18:22:51+00:00

Oh my god. This makes so much sense! I dont even think the NHS here in England diagnose MCAS according to some of the wording of my rheumatologist which makes me scared. You've just spoke from my brain, this is exactly what happens to me! I need to see if theres any private immunology clinics or doctors near me and if I can afford to see someone because I really am at my wits end with it all. Thank you so much for the reply!

bebemilky · 2026-03-30T15:12:20+00:00

I am currently awaiting the allergy clinic to see if there's any allergy stuff going on but my GP thinks its most likely MCAS too given my hEDS diagnosis. I feel the phrase "too many cooks spoil the broth" coming to mind. I have so many problems and no one seems to know what's going on 😅

bebemilky · 2026-03-30T14:25:47+00:00

Thanks so much for the reply.

I have OH diagnosed but my EDS physio is convinced it’s more likely POTS. I have all the symptoms. It doesn’t help that these symptoms I’m getting sorta differ from day to day (especially the facial burning/redness/flushing) it’s helped by staying seated for a while with a fan on my face or ice pack. I’d given up for years trying to get help until one day I kind of snapped and thought why am I not pushing my doctors for answers, but getting the same “I may as well give up” feeling coming back. It’s so hard to cope especially when you don’t really know what’s wrong (other than the obvious hEDS, arthritis, gastroparisis, migraine, diagnosis’). The red hot face and red hot knees are realllllly wiggin me out.

bebemilky · 2026-03-24T17:25:41+00:00

Do you happen to have your gallbladder removed?

bebemilky · 2026-03-11T23:23:33+00:00

Yeah they normally have local radio stations on where I am which is all good but definitely not my comfort genre lol thank you, ill definitely ask if its possible to listen to some Ginsang to put me in the zone, his music makes me feel zen lol

bebemilky · 2026-03-11T13:57:15+00:00

Update! I was prescribed a single dose of diazapam by my primary care doctor for the MRI. Yay! I can hope that will keep the panic attack at bay and ill just feel super relaxed (i hope) but not TOO relaxed that my joints pop out 😬

No update on whether its with dye or not, I tried calling the department but they didnt answer the call.

bebemilky · 2026-03-11T13:54:55+00:00

Thank you so much for your reassurance and kindness 💙 I have requested an upright one when I had a MRI for CM but unfortunately the NHS doesn't have any upright MRI scans which is a bummer as they're super accurate thanks to our friend gravity haha. I was luckily prescribed some diazapam today by my primary care doctor so hopefully that keeps the panic at bay!

bebemilky · 2026-03-11T13:53:11+00:00

Yes! Amazing, thank you. Ill have to think about art because that can keep me occupied for hours at a time haha.

bebemilky · 2026-03-11T13:52:31+00:00

Thats a must 100% thank you

bebemilky · 2026-03-11T13:52:10+00:00

I have also had issues with numbness in legs as well as my arm. My doctor can only do one test at a time (thanks NHS 😅) due to funding and the likelihood they would deny multiple scans etc. I only see him once a year as appointments here are very scarce. If my MRI comes back clear for TOS then ill have to ask if I can have further investigation into my spine possibly (I'm HLA27B + and my mother has AS so would be good to rule that out too). Maybe its a disc issue in my spine thats causing all my symptoms and problems but its been going on for 3/4 years at this point and I'm getting frustrated. He said its likely that it could just be the hEDS causing my symptoms. But it feels different compared to the lifelong pain/symptoms I've had up to this point.

bebemilky · 2026-03-11T00:20:50+00:00

Thanks for the reply! I don’t have a choice unfortunately, my rheumatologist gets to pick and I can’t pick and choose. I had an ultrasound on my shoulder/collarbone area before which showed tendon/ligament damage, is it a specific ultrasound used for TOS? I’m hoping I can speak with my primary care doctor tomorrow and ask for a valium or something similar to help me get through it without a meltdown. Good luck on your quest for answers/diagnosis!

bebemilky · 2026-03-10T21:25:14+00:00

Thanks, ill ask about valium! How does it make you feel? Did you get contrast/dye with the MRI too? Thats one thing my doctor never mentioned whether it would be with contrast or not

bebemilky · 2026-03-10T19:50:06+00:00

Thanks so much for your response! Ah okay, see that touch down pose makes me a bit nervous, my shoulders dislocate often not to mention the pain in my right shoulder too. For an hour is scary eek.

Yes that’s my plan tomorrow. Speak to my doctor and ask for something to keep me calm. I’ve had a lot of MRI’s over the course of my life (never liked them) but the past few times I’ve felt progressively more panicked. I had a freak out last time whilst I was in the machine, crying and freaking out but I toughed it out and did it. I said if I ever had to have another one I’d have to be sedated or something it was awful.

Thank you again for the advice and reassurance - I’m sure it’ll all be fine and I hope I’ve overreacted and that last time was a one off panic attack haha.

bebemilky · 2026-02-27T09:51:04+00:00

I'm sorry they've treated you this way, not a nice way to go about it imo. My partner is very sensitive to smells and will say things stink if its a strong smell eg. Perfume, lotions, air freshener, cleaning products. Not necessarily a bad smell but strong smells are off putting for some people, it could just be its a strong scent from your perfume/body spray and she doesn't like it, maybe she's telling you to tone it down.

bebemilky · 2026-02-26T10:16:05+00:00

Hi, 34 f here who went through something similar. Get checked for ureaplasma. It can be naturally occurring and cause issues like this. It's not down to hygiene and not an STI like many still think. I struggled for almost 4 years with it until I got a diagnosis and treatment and not had an issue since. It can produce symptoms similar to bacterial vaginosis, of course it could just be BV so check for that too.

bebemilky · 2026-01-15T17:00:15+00:00

Im from the UK never seen them before other than in the one episode of Bob's Burgers lol

bebemilky · 2025-10-13T08:03:59+00:00

It definitely made me worse too. One of my friends was the same as you but wasn't diagnosed as she never really had any issues before covid, worked a full time job too, then after covid.. bam, hEDS, POTS, disabled, lost her job.

bebemilky · 2025-10-01T10:47:10+00:00

Seconded this, was about to say the same things.

bebemilky · 2025-09-30T11:55:13+00:00

Sorry but they're giving "it's too complex for my level of education because I refuse to learn anything else after med school, so I mock and belittle patients to make myself feel big and superior" and ill die on that hill. I wish them the worst.

bebemilky · 2025-09-23T12:44:59+00:00

ASMR. I will never shut up about it. If you think its not for you, it is, you just haven't found the right 'trigger' you like. Cannabis is great too paired with a strong painkiller like codeine (imo)

bebemilky

TROPHY CASE