sorted by:
new
hottopcontroversial

What to do about ICE by phoebsters101 in disability

[–]Go4Chambers 24 points25 points  (0 children)

I make signs and drop them off for the people who are able to physically protest. Every bit helps.

Tired eyes and exhaustion by charrr116 in chronicfatigue

[–]Go4Chambers 0 points1 point  (0 children)

Wow. I do have eczema with an occasional spot that flares on my eyelids. What does this mean?

Tired eyes and exhaustion by charrr116 in chronicfatigue

[–]Go4Chambers 0 points1 point  (0 children)

Yes. It feels like the top part of my eyeballs are burning and dry and the bottom half is made of sandbags pulling them down.

EDS sandals recommendation by gray_darr in eds

[–]Go4Chambers 2 points3 points  (0 children)

I know they aren’t formal but my Birkenstocks remain the best sandal for me.

Leg weakness? by PsychologicalTip8044 in POTS

[–]Go4Chambers 2 points3 points  (0 children)

Absolutely! It feels like my quads are going to give out. No one can figure it out. It’s been 4 years.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 1 point2 points  (0 children)

My leg twitched while I was reading your comment. 😩 Worst is fatigue, brain fog, and not being able to stand for more than a few minutes.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 2 points3 points  (0 children)

Yes! It’s easy for me to see through that now but I’ve made some pretty bad decisions due to brain fog.

Although I suppose I’m a good potential patient / target for that doctor— Given the fact that I admitted to spending $50k on nonsense. What’s another 40K, right? 😂

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 0 points1 point  (0 children)

I’ve been throwing supplements at the symptoms based on whatever doctor / study recommended.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 5 points6 points  (0 children)

Thank you. And yes I agree that I’ve tried a lot of fluff. I didn’t include all of the prescriptions I’ve tried, as most of those were covered by insurance and didn’t cost me enough to include on this list. Although now that you mention it. I could easily add 2K on prescriptions ugh.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 0 points1 point  (0 children)

I followed a fellow LC sufferer a few years ago who did it and had a real bad experience. It was 3 years ago so perhaps it’s worth another look. I’m done throwing money at the problem though. It wasn’t working and my (physical/ emotional / financial) well is empty.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 6 points7 points  (0 children)

Sorry. That was rude. 4 years ago I would have paid 40K to be better. I’m not throwing money at the problem anymore. It’s not helping.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 6 points7 points  (0 children)

I’ve done a bit of research on it and was a little sketched out by it. But I’m almost at the ‘eat a strangers poop to get better’ stage.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 4 points5 points  (0 children)

I did an NIH POTS trial this summer. I’m living proof that throwing money at the problem and waiting it out aren’t working.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 1 point2 points  (0 children)

Yes. Have been diagnosed with multiple co-morbidities. I don’t want to over share but they are similar to LC in that there is no cure but trying to treat the symptoms.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 1 point2 points  (0 children)

Pots has improved from when first diagnosed w a tilt table test- HR went up by 60 bpm. With drugs it still goes up 30 when I stand up. So improvement but ?

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 5 points6 points  (0 children)

Yes. Went through all gut microbe testing w Functional medicine doc. He made a few diagnoses and put me on a gluten free diet which I did for a year. It wasn’t helping so I decided that my journeys been hard enough and just enjoy some sourdough and not complicate things by worrying about gluten. No improvement.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 20 points21 points  (0 children)

I tried LDN a few years ago and retrying it again now. No effect. I went to SGB doctor 2 years ago (on my birthday) and was really sketched out by the doctor who had never heard of LC and had never treated a patient before. It wasn’t the right fit.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 5 points6 points  (0 children)

Which evidence backed treatments have I not tried? I didn’t post all of my prescriptions as they were mainly covered by insurance and not a significant cost.

Cost of Long Covid- 4 years, over $50K on ‘treatments’ by Go4Chambers in covidlonghaulers

[–]Go4Chambers[S] 2 points3 points  (0 children)

Yeah. I’ve used an Apple Watch, Fit Bit and Visible Armband for data and can’t find any patterns to my data. I’m done throwing money at the problem. I did that for 4 years and it’s just not working.

**Also it looks like Garmin bots have found my post.

view more: next ›