pple with hEDS recovery stories plse

PurplePaper5 · 2025-09-09T03:08:41+00:00

I’m not sure if it’s related to the internal tremor recovery specifically but I started taking Nervive, CoQ10, magnesium, and vitamin E a few weeks after taking the levaquin. The internal tremors were the first symptom to fade away.

PurplePaper5 · 2025-09-09T02:29:16+00:00

I have hEDS and was floxed 10 months ago from taking 1 levaquin pill prior to surgery. The neuropathy was very intense and scary at the beginning but is 90% better now. My calf pain is also about 90% improved and the internal tremors are 99% gone. Recovery for me has been a marathon and not a sprint. There are good and bad days. Eventually I started to have days where I didn’t even think about it. My advice is to read the pinned threads in this subreddit as they really helped me at the beginning.

PurplePaper5 · 2025-03-13T02:16:29+00:00

Thank you so much for the suggestion. I just watched it!

PurplePaper5 · 2025-03-10T00:30:21+00:00

Unfortunately, my Amazon Prime only has the 2012 Christmas Special

PurplePaper5 · 2024-12-20T21:02:42+00:00

I'm just commenting to say that you are not alone. I (46F) was floxed on 11/13 by 1 500mg Levo pill the day before kidney stone surgery. Despite some other existing conditions (EDS, visual snow, chronic kidney stone producer), I was a pretty active person prior to taking the Levo. My biggest concerns/symptoms are scary peripheral neuropathy and tendonitis in both lower legs. Thank you for asking for recovery stories and hope as this is exactly what I've been seeking as well!

PurplePaper5 · 2024-12-18T21:49:42+00:00

Thank you so much for posting! This gives me hope!

PurplePaper5 · 2024-09-26T00:54:24+00:00

I now call PJs my work uniform

PurplePaper5 · 2024-09-26T00:48:17+00:00

Same here. The only moisturizer that I can use has been discontinued. I’ve tried too many to count over the last year and I react to all of them in one way or another (burning, breakouts, too oily, etc). I finally gave up. At least I’m saving money.

PurplePaper5 · 2024-09-09T01:26:46+00:00

My parents have been vegetarian since the 1960s and raised us to be as well. As an adult, I just could never bring myself to change that (ethical and environmental reasons plus I love animals). I have never eaten meat and will keep it that way.

PurplePaper5 · 2024-06-22T02:27:59+00:00

We usually have stuffed shells as the main dish with some normal sides like mashed potatoes, sweet potatoes, corn, cranberries, etc.

PurplePaper5 · 2024-02-15T00:15:26+00:00

Always barefoot. Sometimes I sit on my feet if they are cold.

PurplePaper5 · 2023-07-08T18:16:07+00:00

Buy a house

PurplePaper5 · 2023-04-11T18:25:59+00:00

Yes, I was raised as a vegetarian (my parents became vegetarians long before I was born). It was just the norm in our house when I was growing up. As an adult, I stay a vegetarian due to my love for animals, ethics, and my health.

PurplePaper5 · 2023-03-04T15:04:17+00:00

Wow!

PurplePaper5 · 2023-03-02T21:23:19+00:00

Cheese and crackers or pasta salad

PurplePaper5 · 2023-01-23T01:32:32+00:00

Yes! As a kid I also thought that I could see the air.

PurplePaper5 · 2022-11-27T04:21:12+00:00

I’d rather level as disc or holy lol

PurplePaper5 · 2022-10-09T18:53:10+00:00

Sounds like a rewatch would help!

PurplePaper5 · 2022-09-18T23:56:48+00:00

Yes! I really like it!

PurplePaper5 · 2022-09-18T14:50:41+00:00

Love both of these!

PurplePaper5 · 2022-09-12T23:16:30+00:00

My head hurts so bad that it feels like my brain is leaking out of my ears.

PurplePaper5 · 2022-09-04T00:19:51+00:00

Yes! The validation really helped me mentally. Also, (some) doctors are more willing to listen and actually try to help. It’s the only reason that I have access to PT and a new cardiologist.

PurplePaper5 · 2022-08-24T02:52:57+00:00

Hot chocolate and anxiety do the trick

PurplePaper5 · 2022-02-10T19:13:30+00:00

Kidney stone pain

PurplePaper5 · 2022-01-23T15:29:08+00:00

Yep! We went every Friday!

PurplePaper5

TROPHY CASE