u/Acrobatic_Block4226

Off to see Dr Mittal with my partner for assessment for HSD (it's definitely not hEDS on current criteria but they may have cEDS, awaiting genetic testing) on private insurance. I saw the hypermobility unit myself over a decade ago and saw Dr KazKaz. Our physio works with the unit.

I've heard from many many people now that she will diagnose and knows her stuff but can be tricky to work with. I'm totally fine with whatever, I can hold my own, but my partner definitely needs a slightly more gentle approach. Can people share their experiences and what this actually means?

And what we can expect from the initial appointment and follow up care?

One of my 5 tattoos is rejecting/becoming allergic after about 4 years of having it. Any advice? It's on the bottom of the back of my leg, never had an real issues with it until a couple of weeks ago.

A tattoo in the same place on the other leg very very occasionally has a much much smaller reaction over red ink, this one has small amounts of yellow ink, mostly black. I don't think the place that did it were brilliant but I doubt the two are related.

It's very bumpy, feels awful, rough, itchy, been putting aveeno on it loads which helps a little but not with the bumps. Am I likely to need it actually removing?

Have hEDS and some allergies grass pollen animals and the likes. MCAS is common with hEDS but I don't think I have it. Got PoTS etc. No issue with any of my just black tattoos including one I've had 15 years.

Any advice?

It finally happened - we became bird people in our 30s. Any good mic recommendations for android (Google pixel) and iPhone? My pixel picks up less than the android but both struggle with high pitched. Thanks bird folk

I am prepping for tribunal for my partner's pip. I am conducting the whole thing for him. Any advice? I also have ADHD brain fog etc so am trying to be as prepared as possible.

I have all the evidence and a tonne of written stuff to back it up, explain it, justify it etc etc. I'm more curious how it actually goes down?

Who judges? Are there medical people? Do they basically grill you and call you a liar? Are they mean? Will me having ADHD work against him if I struggle with answering?

30f 120lbs 165cm

Had screws and plate removed from my ankle 2 weeks ago. Surgeon said full weight bearing immediately, use crutches if I need to, which I don't need to, I can walk perfectly normally pain free.

He didn't explicitly say how much I can walk/do or how much I should rest, so I've kind of been going about life. Haven't had any pain at all and haven't been taking painkillers. Only took ibuprofen the first 2 days when I remembered for swelling. The op was done under general, was in, out and normal without an hour and home a few hours later.

Spent a lot of my days with my foot elevated, and the first week I did nap daily for a few hours, but I have also been going out for things. Physio said walk around the house only when I saw her a week post op. Bit late by then.

Been doing 2000 steps a day from day 2 and 4000 today... Have I likely done any harm?! No pain, no issues otherwise.

Curious what everyone's recovery was like, especially if you had specialist physio.

Had 5 screws and a plate out a few days ago after a year of having them in. No pain or anything, can walk normally, but assume I shouldn't be out walking actual distance yet. Physio said round the house only for now. Hard when it feels fine!

How quick did everyone get back to things? Walking say a mile? 10k steps? A jog?

How long did your scar take to lose the scab? So far I've had the bottom open a little when having a new dressing on day 2 (original one was fully saturated in blood so needed doing). Got the stupid dissolvable stitches which don't seem as good as proper ones.

After what it says on the tin! Physically disabled and got ADHD (fun) and need some high protein vegan meals that are very low effort.

Not really fussy about what, long as it's vegan. Just no potato.

We've tried the meal delivery kits and they work great when we have the energy to cook, but then we will have a flare and can't make anything for a week and waste it all.

Anything quick easy and cheap would be great. Gimme your favourites!

We love tofu, veggies are always hard for me, I just don't like the texture of most. Personally not a fruit/sweet fan either.

Happy to have replacements etc!

Please can anyone in the sandstorm region send me their code and a gift. Please please! Need one more!

Those who've had surgery what home remedies helped you? Any advice? Not medical obviously, just things that helped you, comfy pillows, ice packs? Anything niche?

Not after medical advice!!

I had an ankle surgery 3 days ago to remove the screws and plate that I had put in when I broke it a year ago. I'm going mad already stuck resting (and did go into town yesterday for a few hours - mostly sat down with my leg up).

Anything people have found helpful post surgery? I want to start some upper body strength training so I don't lose it all again, but assume a bit longer resting first.

I survived! Thanks for all the well wishes. 5 screws and a plate are now gone from my ankle! I had the op 2 days ago and was told to keep all the bulky padding and bandages on for 4 days. The nurse seemed a bit confused why it wasn't 2, as she said about checking for bleeding and marking ang extra bleeding.

I carefully unwrapped it today and the actual sterile dressing underneath the two layers of padding is FULLY saturated in dark blood, so I'm guessing old. Is that okay?! It hasn't gone through the sterile dressing, but it is very well sealed at the edges. I have no idea if that's normal but it is very much saturated. Don't want to share the image if it'll upset people!

Just found out I'm last on the list for my ankle ORIF hardware removal tomorrow. This is problematic for many reasons including the fact I'm disabled, very affected by not eating and drinking (faint, BP issues, stomach issues/pain), the fact it's gonna be 35 degrees, neurodivergent and very stressed about surgery and now can't take my benzos to relax as it'll tank my BP even more. Told nothing they can do as longer surgeries get to go first.

Last time I was in recovery 4 hours after due to issues with pain control. Appreciate it's a more minor op but I doubt I'll be able to go home the same day now, which is going to cause issues logistically too. they know all about all my issues, spoken to surgeon, anaesthetic already.

Ugh just wanted to vent. It's just a change of plan which my ND brain is having a meltdown over. Tried to speak to the hospital for a week but they were never available and now saying I've called them late to sort it but either way nothing they can do.

Any advice? Will they operate still if I do pass out whilst waiting? Can't eat past midnight and last time they were super funny about even sips of water. They didn't know if the ward has Aircon, didn't know the bed situation for after surgery if I have to stay, said my partner should be able to wait until I go down but last time he was made to leave. Just trying to be prepared and no one can even help with basic info. Meltdown

Early 30s, female, 120lbs, 165cm. Opioids don't give me pain relief. Best I get is feeling very sick/ill and out of it, but never high/euphoric/good/pain free like you see in movies. Cannot understand why anyone would ever choose to take them or what they gain from them.

Have chronic pain from hEDS.

Morphine - first time I took 2.5ml felt quite nice for a minute or two. After that any time I've taken it it does absolutely nothing except sometimes make me feel sick or sleepy. Never provided any pain relief

Tramadol - depresses breathing, everything moving around me, feel very sick, no pain relief at all

Codeine - makes me feel sick, nothing for pain at all

Fentanyl - only had during and also after surgery. According to notes it didn't improve my pain when given after waking up. Decent doses given from what I was told

I know some people don't metabolise codeine but why does nothing else work. Is there a gene mutations causing this? Is it a chronic pain thing (even tho I took them all for acute pain too)?

I was so scared of not having any pain relief options in an emergency after learning morphine didn't help my chronic pain in any way, but was reassured it would work on acute pain, well it didn't.

Only thing that gives any relief is ibuprofen, paracetamol, entenox, cannabis (legal script), and things like MDMA, amphetamines (ADHD), LDN to some degree.

Things like gabapentin, pregabalin, amitriptyline also didn't work (scary mental health side effects). Sigh

edit: forgot to add I have atypical depression which is in complete remission on lamotrigine and has been for 6+ years. forget I have it! (but definitely do as it came back when I tried to come off the lamotrigine, so I've been told to stay on it for life)

I don't mean why is it allowed, I mean why on earth would you? You're making vows to a god you don't believe in, ergo your vows are void. I cannot comprehend it. Sure maybe you can argue back in the day it was the done thing, but why are modern atheists doing this?!

Starting modafinil tomorrow and melatonin in a few days under private neurologist recommendation. hEDS, pots, ADHD, chronic fatigue (not CFs/me) and all that good stuff.

Anyone on either and found any relief? He recommend the modafinil as I sleep tonnes but never rested. Hoping the combo helps. Said I can try clorazepam if melatonin isn't super helpful. Lovely to have a specialist who works together to find combos and back up his reasoning with explanations of brain chemistry

I'm talking supplements, medications, equipment, lifestyle changes, anything that takes the edge off!

Starting modafinil tomorrow and then melatonin a few days later and hoping that helps. Every few years I'll do a deep dive on things that may help fatigue and try them all out, get sad they don't work, and then stop trying... And it's research time again!

Partner had a negative tilt result today. He had a couple panic attacks including a bad one later in the 20 mins. He was having symptoms after a few mins which aligned with his autonomic symptoms, which definitely aren't panic related (triggered by heat, exercise, temperature changes, standing etc) and then started to panic a bit. His HR went wild, BP stayed stable. They said no evidence of any issues but will get the doctor to confirm. My thoughts were he was having actual symptoms of his dysautonomia and then panicked because he has anxiety around this stuff and that overrode any symptoms. Anyone had a similar experience?

Poor man's tilt at home shows POTS. GP saw OH in her office. At home we've seen OH and Ohypertension. He has severe Raynaurds. Obviously upset at a negative result despite doing the whole thing plus the spray.

The spray triggered immediate symptoms including typical faint ones, sweating, clammy, eyes going, feeling faint etc. He doesn't usually get any overheating with panic attacks. So hard to pick it all apart.

he also has flares of waking up in the night with what we think are adrenaline dumps. bp can spike to 160/110 (usually normal at rest)

Diagnosed with osteoporosis early 30s with no risk factors or family history. Rheumy are doing a tonne of investigations but so far all normal, minus low phosphate for the last 4 years (mild-moderate) and low urea (again for many years).

Got a urine sample and repeat fasted phosphate bloods to do, along with some extras thrown in, to check for kidney wasting conditions. Looked up all the conditions I could find and none seem to fit. Understanding low phosphate can lead to osteomalacia not osteoporosis.

Genetic testing will be the next step, but again, none seem to fit from what I can see.

What other conditions can cause this at such a young age? I am active, do impact activities, eat well, been sporty my whole life, everything else is in range, no family history. Got hypermobile Ehlers Danlos and POTS. Bit baffled, as is rheumy