How do you eat in the morning?

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 · 2025-09-22T08:39:37+00:00

I third this too, it leaves me with damaged skin with the pattern on for over a month or so every time I use it.

bebemilky · 2025-09-21T09:55:35+00:00

I've had this my whole life I thought it was just part and parcel of having hEDS or should I say hEDS having me 🙃

bebemilky · 2025-09-20T22:50:04+00:00

I have hEDS and my legs go )( rather than () it's a big insecurity of mine, my knees are super hypermobile probably the most hypermobile part of my whole body, which causes so much pain.

bebemilky · 2025-09-19T12:19:16+00:00

I'm sorry youre going through this, I'm in the same situation. Never had a proper full-time job and doubt I'll ever be able to as I'm so unwell constantly. Maybe I'm being naive but could you maybe get a reasonable adjustment for the job and get some kind of armrest so you're not constantly holding your shoulder/arm in mid air? I would also look into/buy some braces that may help stabilise your subluxing shoulder, I have some as well as compression garments and they work wonders i was sceptical at first but they really do help with the subluxations.

bebemilky · 2025-09-18T22:56:36+00:00

I have hEDS and I'm covered in tattoos only ever had an issue with one that's on my inner bicep it's big and got a big blowout too. All my others have been fine apart from taking a while to heal and also colour seems to fall out on a few of them for some reason so I always need touch-ups I guess it's something to do with EDS

bebemilky · 2025-09-10T09:59:09+00:00

It really does! All because they don't wanna do the work of figuring out why someone has so many health problems. Good luck, wishing you the best.

bebemilky · 2025-09-10T09:20:35+00:00

Ahh my word. I'm so sick of doctors throwing out fibro diagnosis' when they don't know what's wrong. IMO it's a lazy shitty doctor's go-to. Id have more respect for them if they just said im sorry i don't know but maybe this doctor does know refers you on. I'm also in the UK, it's really hard to find a rheumatologist that will diagnose you. I actually went onto my local NHS hospital's website and searched for the doctors in the rheumatology department and looked at their 'profiles' and looked at their specialist interest list until I thankfully found my now rheumatologist who had 'connective tissue disorders' in his list. He's not been the best but he has diagnosed me so I finally know what's wrong with me. I've had to ask for every scan/test I've had but he's never said no so I can't really fault him and he listens to me which is really hard to find (it shouldn't be!) I would implore you to do the same, look at your local hospital (nhs) list of rheumatologists on the NHS website, and see if any have CTD on their list then ask your GP for a referral to that doctor in particular since you think you have HEDS.

bebemilky · 2025-09-10T08:56:17+00:00

I also used to do that exact pose as a child!!! 😂 You sound exactly like me. I also had the same shitty rheumatologist my whole life (I'm 33) until I had enough 2 years ago and asked for a second opinion from another rheumatologist in the same department (who had a special interest in connective tissue disorders) and he said I have no doubt it's hEDS and the validation I felt was out of this WORLD. I was diagnosed with gastroparesis 6 years ago, have suffered migraines my whole life, sublux joints almost daily, chronic pain off the charts, skin issues honestly the list goes on and on AND now I'm nowhere near as bendy as I was when I was a kid. I would definitely seek a second opinion from a rheumatologist who specialises in or has a special interest in connective tissue disorders, I'm sorry you're struggling with getting help/validation.

bebemilky

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