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u/prayersforrainn

r/POTS r/CitizenBand r/eyes r/hypermobileEDS
▲ 12 r/POTS

heatwave has me bedridden

i was diagnosed in 2019 and have been on Ivabradine ever since, which has significantly helped my quality of life

im in the UK and this heatwave has sent me right back to when i was first diagnosed - every single time i stand up get syncope and have to lie back down with my legs up, even just standing to brush my teeth is impossible. i have been lying down for the past week basically all day everyday.

ive been drinking lots of water and electrolytes and am living by my fan, but i feel like im going crazy not being able to walk around or do anything.

i know the heat exasperates POTS symptoms, but i didnt realise it would be so bad that i cant get out of bed.

is anyone else struggling this much or should i contact my GP? not sure whats normal and whats concerning

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u/prayersforrainn — 2 months ago
▲ 17 r/hypermobileEDS

NHS vs private assessment report

first report is NHS, its frustrating me because during the exam the nurse looked at my scars, felt one of them and confidently told me it was an atrophic scar and gave me a point for it on the diagnostic criteria. at the end, my score was:

criterion 1: yes (beighton score 7/9)

criterion 2: no (scored me 4.5 but 5 is required)

criterion 3: yes

for criterion 2, i was scored for velvety skin, skin hyperextensibility, heel papules, scars and .5 for stretch marks as i only have a small amount on one thigh. she said no to having a high palate after checking.

i don't have any family history as my mum is adopted and is a single parent, so medical history is unknown

i saw a private specialist, who did diagnose me and said i do have a high palate, but the examination felt a little rushed and now im second guessing everything (i have ocd and ruminate over these things)

would you say this is a solid diagnosis? i feel like 4.5/5 is basically 5 right?! the nurse was really hesitant to give me any kind of diagnosis as she said "eds, fibromyalgia, chronic pain, its all basically the same thing and is treated the same so the label doesnt matter" and she did diagnose me with fibro in the same appointment

i guess i just need some reassurance that i haven't just paid someone to give me a diagnosis that i don't have lol ><

u/prayersforrainn — 3 months ago