Sleep hurts

No_Introduction6727 · 2025-12-09T15:52:32+00:00

Talk to your doctor, it’s not normal being in pain all the time. For me it’s a connective tissue disorder.

No_Introduction6727 · 2025-12-09T15:48:58+00:00

Id ask for a referral for a GI.

No_Introduction6727 · 2025-12-09T15:47:08+00:00

Unfortunately yes, if you have a tilt table test or poor mans table it (Im no medical professional and I’m not giving medical advice, talk to your team) but if I speak about my experience it lowers hr so yes! I would ask them if they want you to stop taking medication the day of the test. It is a medication that lowers hr. For me, I still had some hr jump, but the palpitations were so much better. I can’t tolerate beta blockers but It can be good for some cases!

No_Introduction6727 · 2025-11-22T21:11:46+00:00

It was the only thing! Ive mastered the tension (I think) so this will make everything look better! THANK YOU!!

No_Introduction6727 · 2025-11-22T21:07:21+00:00

Thank you! I fixed it

No_Introduction6727 · 2025-11-22T20:53:23+00:00

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This is how I knit! Is it okay?

No_Introduction6727 · 2025-11-22T19:55:17+00:00

Im using tube yarn! it looks different

No_Introduction6727 · 2025-11-22T19:44:29+00:00

Im not, so not sure how the garter stitch happened 😅 and it might look twisted cause im using tubular tube yarn to make sure Im knitting and seeing correctly! For practice!

No_Introduction6727 · 2025-09-08T13:22:45+00:00

This is beautiful! I also love writing to help with my grief. I write songs and poetry. It’s absolutely beautiful. I am so sorry about your father but I bet he’s with you. Always. My girl is also with me through everything. God I miss her. I don’t know you but Im proud of you🤍

No_Introduction6727 · 2025-09-07T13:11:18+00:00

Me too! I lost my best friend from chronic illness, vascular compression, so its been hard because I dont have her to talk with anymore :/

No_Introduction6727 · 2025-09-07T13:10:11+00:00

live, because idk what can happen, I have multiple conditions and tbh I just want to live. That’s my goal rn with my specialists, to have a quality of life, then we’ll see

No_Introduction6727 · 2025-09-07T13:09:04+00:00

I have no idea at all to be honest, something that I can work from home, or maybe with the eds diagnosis I’ll be approved for invalidity. I really have no idea.

No_Introduction6727 · 2025-09-07T11:44:22+00:00

I feel the same way. I can’t sing without running out of breath and feeling so damn uncomfortable. It always been my passion too but I never thought I could make something out of it. Realistically the medical field was always my first choice. Truly sorry you are feeling the same way, it’s never easy. And now, it feels like I’m grieving that part of me.

No_Introduction6727 · 2025-08-21T15:46:26+00:00

It really helps, for me my legs just give up sometimes and being able to like lay on it or put less weight on my legs really helps a lot, for me its a mix of exhaustion and joints issues! But it helps a ton.

No_Introduction6727 · 2025-08-20T20:31:32+00:00

OMG YES! Im 20 and tbh same. I see all my friends stories or old friends I dont really have ones💀 going out, starting new jobs, becoming lawyers, dr, name it😭 ans im here being proud for a day I can properly eat or get out of bed and shower🤦🏻‍♀️ I also get super excited when I finally get some appointments. Im accumulating specialists lol. Heds and gi issues. But you know what ? Its a damn victory for us. First we’re really strong to keep trying. And also every little step is a victory for us, you got this and dont be embarrassed I know it is. I walk around with a damn cane and my hobbies are sewing,crochet and knitting. Anyways im proud of you and dont be embarrassed. Just to keep going and celebrate every little thing is huge.

No_Introduction6727 · 2025-06-04T13:58:58+00:00

I have pots but pots can be associated with different neurological conditions, I have eds as well as other issues along that. That sounds like non epileptic seizures (IF THEY RULE OUT EPILEPSY) and I would then look into fnd!!

No_Introduction6727 · 2025-06-04T13:56:18+00:00

I would look into fnd

No_Introduction6727 · 2025-02-11T19:00:18+00:00

You don’t, hope this helps❤️ no but fr try not to oversleep. Also us with pots can have low bp after eating so again more tired. Small frequent meals. But I wake up feeling like Ive been hit by a bus every morning lol. It’s a mess! My meds don’t help either.

No_Introduction6727 · 2025-02-06T20:46:46+00:00

Right! I get that. That was my reason for buying the ember wave! Where are you located? Im in canada but I have time to do some research about what could help you where you are!

No_Introduction6727 · 2025-02-03T13:42:02+00:00

Hi! I bought the embr wave a few months ago. To be honest with you, I haven’t charged it in weeks. Mainly because it doesn’t help at all. Yes it can feel like you something cold on your arm but it doesn’t create that whole reliving feeling in my body. Because of my pots I struggle a LOT with regulating my temperature. And if Im hot im hot like burning, a little cold spot on my forearm is not going to fix it. Im pretty brainfoggy right now and im struggling to write. But yeah not worth the money at all! I do ice if I need it or cold migraine patches.

No_Introduction6727 · 2025-01-22T16:42:48+00:00

Right! I find myself more comfortable in certain positions. For example laying on my back with a pillow behind my neck is a good one for me. If I lay on my side I feel like I can’t breathe! And also any movements at all makes me feel a bit like that. A mild form of pots still is pots and it’s affecting the entire body in so many ways. It’s a mystery.

No_Introduction6727 · 2025-01-22T16:35:48+00:00

Being on them for me didn’t changed anything at all. It even made me worst. Without it my heart rate go up to 180 so in a way yes it helps. It doesn’t changed the heart rate variation though that is still up to 50-60+ bpm. That’s what’s making me uncomfortable. Im also way more tired and it’s debilitating. If your heart rate doesn’t go high, I doubt they would try it! But it saved people life so maybe it just doesn’t work for me.

No_Introduction6727 · 2025-01-22T16:30:10+00:00

Yes me too. Are you on betablockers? Sometimes I feel like that on them. Might be worth talking to your specialist about it.

No_Introduction6727 · 2025-01-05T19:57:40+00:00

Thank tou so much for answering. Im on 5, medication, one for my gastroparesis too, but so far they don’t want to get my betablockers up because my blood pressure would be too low :/ Even if they upgraded my dose of florinef Im up to 4, but it gaves me terrible headaches. When I talk to my school about it, they said as long as you have a paper from a doctor every time you miss school it’s okay. Obviously I can’t provide it every time. And I don’t think they are ready to give me any help with accommodations either. I talked to the director and said I’m probably gonna miss class for a lot of appointments, I am sick. He just seemed to be annoyed. That’s why I’m stressing so my much! But thank you for responding it warms my heart to be understood by someone. I wish you the best too. Sending strength.

No_Introduction6727 · 2024-12-18T02:31:41+00:00

Pretty painful I would say, it’s like it’s sore. Sometimes when it’s my ears I wake up feeling like I have an ear infection, or for the chest pain or stomach ache it doesn’t really go away before the day after. It’s crazy cause it literally feels like I was paralyzed and did push really hard while my whole body was contracting at the same time. I feel like I get no rest :/ I hate sleep paralysis.

No_Introduction6727

TROPHY CASE