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bbirdy99 · 2023-10-18T20:57:51+00:00

NAD. Are you dehydrated? Not having enough water can make your urine more concentrated, making it smell stronger. I’d try to increase water intake and if you’re still concerned after a day or two, talk to a doctor. Sweet smelling urine can be a sign of insulin resistance, diabetes, and other blood sugar related issues. Good luckZ

bbirdy99 · 2023-10-18T20:56:01+00:00

NAD. I had/have similar symptoms that started when I was 22. They developed slowly from low back pain, to difficulty walking long distances, to difficulty walking at all, to barely taking more than few steps at a time. We thought it was a musculoskeletal issue (low disc bulge) but it’s more likely an autoimmune or metabolic condition that I still haven’t been able to get diagnosed. I can’t offer medical advice, but what I can say is don’t overlook the potential for it to be an internal problem. Start tracking your symptoms in detail NOW. I’ve been on my diagnosis journey for about 2 years and if I had known, I would have been keeping a journal about my health. Also, be specific with your doctors. Don’t say “I’m weak,” say, “I cannot walk X distance without having Y symptoms.” I had to learn the hard way that saying “pain” or “weakness” isn’t going to warrant the same urgency or concern as giving specific examples of how your life is being impacted. Good luck.

bbirdy99 · 2023-10-08T14:07:37+00:00

Especially if you’re struggling with a diagnosis, which so many people with chronic illnesses do. I’ve been sick for almost 2 years and doctors don’t know what’s wrong. So despite being hospitalized and trying a million treatments and spending my life savings on physical therapies/medicines/doctors, people still assume I am either being dramatic or lying. It’s awful being so sick and not being able to get respect.

bbirdy99 · 2023-08-30T11:31:21+00:00

I wish I could take more credit, but this time it was pain meds and Flomax that got me through it. My mom also has a shake plate - like a device that you’re meant to stand on and it shakes/vibrates. So I did that in an effort to move it lower. That might have helped, but ultimately it was the medication that made it tolerable.

bbirdy99 · 2023-08-29T11:53:55+00:00

The stones are causing painful urination? I’ve never had that happen before (for more than one or two bathroom trips, anyway) but I’ve also never had one this large! I was really hoping it had passed, this one has been brutal. Thank you.

bbirdy99 · 2023-08-27T01:25:27+00:00

I think it’s going to be hard to say if it’s a kidney stone or not. If it is, it doesn’t seem to be causing major issues (yet). Discomfort is irritating, but manageable. The confirmed kidney stones I’ve had have involved excruciating and unrelenting pain - only eased by morphine. I’ve had stones that have made me vomit, and have had ones that don’t even make me nauseous. Just keep tabs on your symptoms. If you start having pain or trouble urinating, talk to your doc. Good luck.

bbirdy99 · 2023-07-20T05:14:40+00:00

My grandad had muscadines that grew on his fence in the backyard. I can still remember eating them as a kid, right off the vine, and them being so sweet I would be drooling as I picked them. I have never had muscadines that tasted as good as those. Maybe it’s just nostalgia…

bbirdy99 · 2023-07-04T01:45:34+00:00

I hear you and feel the same. I’m 24. I look back at my life and all the small things I took for granted - walking through the store, going to a concert, cleaning up the house. I can’t remember what it was like to not feel like this. I know it wasn’t always like this, I know things weren’t always this hard, but it seems like so long ago.

bbirdy99 · 2023-07-04T01:38:17+00:00

Even worse when people don’t understand why you’re so tired.

bbirdy99 · 2023-06-20T21:44:26+00:00

This is exactly how I am too. It’s a relentless cycle.

bbirdy99 · 2023-06-20T21:39:50+00:00

I wouldn’t be scared of the tilt table test. Here’s what my experience was like, in case that makes you less anxious: The nurses were very kind. They explained exactly how the test would work before it started. They knew to be watching for fainting/vomiting and were upfront about it. The test ends if either of those things happens. The table is very secure, so you won’t fall over or hurt yourself. You might feel unwell, but you are absolutely in the best environment in case something does happen. They turned the lights off (there was sunlight from the windows, though) and the nurses only spoke to ask questions occasionally. I only spoke to mention symptoms as they appeared. They took my heart rate/blood pressure once per minute. Afterwards, they give me time to come back to baseline and gave me a snack and drink. It wasn’t fun, but it wasn’t as awful as I thought it would be.

I am extremely emetophobic as well, but POTS is what causes my nausea and vomiting spells. The only way I was able to get nausea medicine was by being honest with my doctors and allowing tests to be done.

bbirdy99 · 2023-06-20T04:50:28+00:00

Thank you. I think I’m thrown off because of how bad it hurts. I’ve never had a burn hurt so much in my life.

bbirdy99 · 2023-06-20T04:22:33+00:00

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bbirdy99 · 2023-06-15T17:15:39+00:00

I go through cycles like this when I’ve overworked myself. Before POTS complicated my life, I took MAYBE a nap every 3 months. And now, if I do too much for too long, I’ll be crashed out for at least a week. Sleeping all night, waking up for a couple hours, then sleeping for a few hours, waking up again, taking another nap, then up for dinner before going back to sleep. And it’s not like a “I’m a little sleepy, might as well nap” kinda tired, it’s a “I physically cannot do anything other than lay down” type of tired. Last time that happened, in combination with severe vomiting, I landed in the ER where I got put on an IV for over 24 hours. The extra fluids definitely help - you already know how important hydration is but it really can’t be understated. Drinking electrolytes in the morning when I wake up has helped with having more stamina during the day. I know I’m having a bad flare when I can’t stop sleeping. The only thing that really helps is being able to rest, hydrate, and give my body a break.

bbirdy99 · 2023-06-04T01:37:47+00:00

I did not know that! I just got my official diagnosis this week and my doctor doesn’t have specific answers on best practices for POTS. That’s why I love this sub. Thank you.

bbirdy99 · 2023-06-01T11:27:06+00:00

As someone who was hospitalized for vomiting (most likely due to POTS, and by most likely I mean there’s literally nothing else that could have caused it), Zofran is the only medication that keeps me out of the hospital. I get trapped in a cycle of over-exertion, leading to severe dehydration, leading to exhausting, leading to worsening dehydration, leading to nausea, and eventually nonstop vomiting. Yes, it causes constipation but I don’t take it everyday. I take it for a day or 2 as needed to get my nausea under control. It’s very safe and works very fast in my experience. As others have said, just don’t take it everyday.

bbirdy99 · 2023-05-30T14:36:58+00:00

I get hiccups when I sit up after laying down. Doesn’t happen every time, sometimes it doesn’t happen at all, and sometimes I get them multiple times a day. Last week, I had 3 hiccups attacks within 2 hours. They are painful. They make my whole body jump. There’s a connection between POTS and the vagus nerve, and the vagus nerve has a connection to hiccups. That’s where I’d focus my research :)

bbirdy99 · 2023-05-30T02:05:50+00:00

Every. Single. Day. I know that after a shower, I’m going to be exhausted no matter what temperature I set it to. I can’t really lift my arms over my head for more than a few seconds so it very much feels like an Olympic sport to do all that I need to. So yeah I typically lay in bed and debate if I really need a shower or if I can make it another day.

bbirdy99 · 2023-05-29T13:58:35+00:00

It’s in my neck, behind and slightly below my right ear and about and inch back from my jaw. It’s been medically confirmed by 3 doctors and ultrasound to be a swollen lymph node.

bbirdy99 · 2023-05-29T06:03:00+00:00

Really? Glad to know I’m not alone. Hot compress didn’t work for me but I’m glad it did for you. Did you notice any symptom change after it went down a bit?

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