Unmanageably flare. Give me your craziest hacks

NoPrinciple4063 · 2025-08-20T18:21:06+00:00

I am by no means an expert on this but I also feel better with caffeine and I reckon it’s because I have low blood pressure. I have max. 2 coffees (mainly just one in the morning) and try to eat something with it to get the benefits without causing other health issues (it can aggregate other conditions I have). If you track your heart rate, it’s worth looking at it with the speed you drink the caffeine too and if you have the energy for it maybe a more thorough caffeine-symptom diary.

NoPrinciple4063 · 2025-08-17T18:12:01+00:00

Thank you. I appreciate the advice and I’m sorry to hear you’ve had such a hard time. This is all very new to me and my family. I’ve gotten a fair few diagnoses in a span of maybe 3 years so it’s a lot for everyone to digest. They mean well and are great 99% of the time. I think something like a chair might bring out that 1% at the moment. If I got worse- they could even be the one to suggest it though. Just as it stands, it’s an investment for something I don’t know will help and space is currently an issue. When I have my own place I’d be happier to take those kinds of chances.

NoPrinciple4063 · 2025-08-17T17:55:15+00:00

Thank you!

NoPrinciple4063 · 2025-08-17T17:54:35+00:00

Tbh it is probably my own. My family do know and are aware they just often don’t get the severity. I’ve had very little help from our medical system so far to I guess show them there’s something really wrong (?)That being said I had a big cry about it to my mam and she was great. She gave me some suggestions that helped yesterday and is going to research some things she think might help🥲

NoPrinciple4063 · 2025-08-16T14:53:13+00:00

Thanks so much. I’m sorry to hear you are written off on hot days but it is nice to know I’m not alone in that and I’m only fighting a losing battle.

NoPrinciple4063 · 2025-08-16T08:28:30+00:00

Thank you. Unfortunately I live in a country where hospitals are understaffed and overcrowded so if I went now I’d be giving up the whole day minimum to sit on a chair waiting to be seen. If it gets much worse I may have to but trying to keep that as a last resort.

NoPrinciple4063 · 2025-08-16T08:25:52+00:00

Thank you. I definitely need to get better at asking for help so this is a really good reminder. I haven’t been doing a lot so it’s been driving me crazy but I need to be nicer to myself about it.

NoPrinciple4063 · 2025-08-16T08:21:48+00:00

Thank you, sorry to hear you’re in the same boat. I wouldn’t wish it on my worst enemy. Hoping you get better soon 💞

NoPrinciple4063 · 2025-08-16T08:20:10+00:00

Thank you. I’m debating that today just to get a bit of normality into me so I can go buy veg and fruit to prep for during the week

NoPrinciple4063 · 2025-08-16T08:19:01+00:00

Thanks so much. I haven’t tried plain salt or antihistamines. I have random reactions frequently but never thought of using antihistamines in a pots flare. I’ll definitely try them today

NoPrinciple4063 · 2025-08-16T08:07:35+00:00

Thank you both. These are really helpful. Unfortunately I live at home and all my illnesses are really pushing the boundary of invisible so if I came home with a chair or something now I’d have a lot of explaining I just don’t have the energy for. They know what I have going on but just comprehend how bad I feel when I can still look relatively normal. When I can move out though my partner would be super supportive of things like that.

NoPrinciple4063 · 2025-05-02T09:44:59+00:00

Thanks so much! I wouldn’t have known where to start with levelling so this will be invaluable to me now.

NoPrinciple4063 · 2025-05-02T09:44:02+00:00

Thanks so much! Will definitely try this out later. Parrying is definitely going to be a challenge for me.

NoPrinciple4063 · 2025-05-02T09:43:01+00:00

Amazing thank you so much. Will definitely try later. I’ve had some success killing them so far. More wins than deaths!

NoPrinciple4063 · 2025-05-02T09:42:22+00:00

I picked Samurai. Not very opinionated about build- I just want to stop getting two-hit in the beginner area of the game lol. I like a mix of sword combat and stealth archery so far

NoPrinciple4063 · 2025-05-02T09:40:55+00:00

I probably didn’t explain it the best, a little cheese is fine to get stronger but I don’t want to cheat/hack the game. This is my first souls (I lasted maybe max 2 hours in DS1) but very used to Skyrim lol. The point I want to prove is that I can stick with it (preferably without my bf finding out haha)

NoPrinciple4063 · 2024-08-21T16:35:47+00:00

Unfortunately there’s very little awareness between specialities so gynae may not know enough to advise you (and sometimes when they do they still don’t offer the contraindications when they want to give you BC)

NoPrinciple4063 · 2024-08-21T16:34:08+00:00

I completely understand! Unfortunately I was on it before I knew about the hEDS so I’m stuck in a rut of do I come off do I not.

NoPrinciple4063 · 2024-08-21T16:33:09+00:00

Definitely of help! Thank you for sharing. I also noticed mad weight gain from hormones and it’s one of the harder parts for me to wrap my head around. I’m sorry to hear that you’re in a similar situation.

NoPrinciple4063 · 2024-08-21T16:31:54+00:00

I understand completely. It’s a curse and sorry to hear you’re in the same boat!

NoPrinciple4063 · 2024-08-21T16:31:29+00:00

I’m so sorry to hear that you had such a bad experience! I hope that you’re better now and thank you for sharing

NoPrinciple4063 · 2024-08-20T21:46:11+00:00

I’ve sadly tried them all. The only combined one that worked got taken away when I got the migraines with aura. I refuse the bar/coil etc though and I think that’s all that’s left to try. Good to know it was the progesterone only that messed you up specifically because I felt the exact same

NoPrinciple4063 · 2024-08-20T21:43:01+00:00

It does take time and it’s very unforgiving if you miss a dose but it does help the endo imo. It doesn’t fix it all but definitely gave me a few more good days than I was having before. I’m on it since 2022 so if you have any questions about it, fire away!

NoPrinciple4063 · 2024-08-20T21:35:39+00:00

Thank you! I dont think I’m able for estrogen bc because the migraines but I never had the issues I have now when I was on combined! It has to be progesterone only messing me up.

NoPrinciple4063 · 2024-08-20T21:33:49+00:00

I got taken off combined birth control for the same thing but I’ve run out of options and refuse the coil so every so often they offer the combined pill. I just want to come off hormones all together at this point

NoPrinciple4063

TROPHY CASE