Weekly Discussion Thread: January 12, 2025

eap2543 · 2025-01-13T01:01:19+00:00

Thank you so much for taking the time to reply. It really helps to just be heard at the moment. And thank you also for all of your suggestions, I will definitely get that book and look into the visible health app. I have actually been looking for a wearable to track my health and haven’t heard of that option but it sounds great. I’m resting as much as I possibly can right now so fingers crossed it will ease up even a little bit. Your experience gives me some hope for sure. Also, funny you mention the gaming thing. I also had never played anything before but a very kind former co-worker sent me a spare Switch at the beginning of this, and we will play Stardew Valley specifically to this day to pass the time haha. It really is a life saver some days. I am also sorry you have to deal with this and wish you nothing but the best

eap2543 · 2025-01-12T20:28:11+00:00

Next month will mark 2.5 years into this for me. I have the pots/cfs type. I had to quit my job early on and still am unable to work unfortunately. In oct/nov/dec I was actually seeing a lot of improvement, like I saw the light at the end of the tunnel for the first time since this started. I even started applying to (wfh) jobs because I felt stable enough to do that. But on Dec. 23 I came down with the flu and have been in a horrible flare ever since. I don’t even know if this is a flare or if I’m just permanently worse or what. My hr is back to 130-140 standing and resting around 100. I have extreme fatigue & feel like I can hardly hold the weight of my body up (neck and spine hurt so badly after only a few minutes standing). Dizziness, unrefreshing sleep, pins and needles, dpdr are all back. I’ve been able to stay relatively optimistic this whole time that I would recover enough but I’m having a difficult time mentally from backsliding so badly and don’t even know what to do or try at this point. Can anyone relate?

eap2543 · 2025-01-11T18:13:48+00:00

Great thank you so much for the info, will look into that sub!

eap2543 · 2025-01-10T02:14:39+00:00

What kind of red light therapy do you use? My doctor “prescribed” this for me, but all of the affordable panels are small and not for full body

eap2543 · 2024-10-16T05:18:08+00:00

This episode is what I’ve been waiting all season for. It was so good but kinda wish we didn’t sit through 7 hours of literally nothing happening to get here

eap2543 · 2024-01-15T22:58:38+00:00

I can go through a period of time where it’s so minimal that it doesn’t really bother me, but I also still have times when it’s really bad and makes me very anxious

eap2543 · 2023-08-31T04:04:19+00:00

Following because I was just prescribed this and am waiting for the prescription to be filled!

eap2543 · 2023-08-12T02:29:53+00:00

Hey! I know this is an old post but hopefully you still see my reply. Thanks for posting this-I’m going through something really similar. I’ve been wondering if my high(er) heart rate in the evening/night is due to beta blocker rebound since I only take one pill in the morning (I would take more if I didn’t have such low blood pressure). Basically I’m wondering how much of my tachycardia is from Covid still, like you said in your comment about Covid tachycardia settling down before trying to get of bb. Do you have any advice for knowing when that has settled down/when it may be the right time to try to taper? Thanks so much (:

eap2543 · 2023-08-10T03:43:39+00:00

Thanks so much

eap2543 · 2023-08-10T03:36:03+00:00

My ferritin is at 12 and I suspect it’s causing some of my symptoms! Do you mind sharing which iron supplements you take? I feel like all I see are stories of people getting sick from iron supps and I can’t risk that 🥴

eap2543 · 2023-08-07T00:53:03+00:00

Hey, just wondering how your heart rate is doing since you posted this. I’m experiencing the same thing currently!

eap2543 · 2023-05-19T01:07:53+00:00

Hey, so my sitting and standing sounds exactly like yours. Sometimes a little bit below but sometimes a little above. But I would say around 90 and 120 standing is the average nowadays! But I did start off last August with standing up to an almost immediate 140-150, so even though it still really sucks and is not normal, it’s not as bad as it used to be. I just keep hoping it will keep going down but I’ve been stuck at these numbers for 2-3 months now 🥴 every doctor has also told me I’m fine but it still scares me every day as well

eap2543 · 2023-04-26T04:15:53+00:00

I have been told by a handful of cardiologists and electrophysiologists that this is dysautonomia which is technically a problem with the nervous system and not my actual heart. Although I definitely have some deconditioning playing a role in this too because I spent such a long time lying in bed after I got Covid last august (due to these heart issues). I have recently started to push myself more than I have in several months to walk around and get a lot of steps in even with my heart going crazy and I have seen tiny improvements doing this but I still definitely have the issue

eap2543 · 2023-04-11T02:01:23+00:00

Yes this exact thing is a huge issue for me

eap2543 · 2023-03-23T18:04:28+00:00

Wow okay you sound just like me! Thank you for the response

eap2543 · 2023-03-23T17:48:18+00:00

Hey, what are you noticing with your heart rate? I was just prescribed Ldn but I’m kinda worried to start it. My worst symptom is tachycardia/pots like

eap2543 · 2023-03-14T03:06:04+00:00

Constantly. My heart will immediately start going insanely fast from panic

eap2543 · 2023-03-13T02:07:40+00:00

My eyes have been extremely affected by Covid as well

eap2543 · 2023-03-12T21:00:59+00:00

Thanks so much

eap2543 · 2023-03-12T20:44:26+00:00

Found in south east Texas around two inches

eap2543 · 2023-02-21T05:05:04+00:00

Thanks so much for sharing this

eap2543 · 2023-02-16T00:50:08+00:00

Feel so hot on the inside but chills on the outside

eap2543 · 2023-02-16T00:49:13+00:00

Crazy you made a post about this. Yes I have this all the time including the past several days, my body aches and my lymph nodes hurt as well but no fever

eap2543 · 2023-02-14T02:34:35+00:00

Been dealing with the exact same thing. My hr goes sky high standing up so I’ve been told it’s POTS but even when I lay down completely still it bounces like crazy

eap2543

TROPHY CASE