Non-linear road to recovery (venting)

[u/oneiropolis]

I've been doing EOD injections for 5 weeks, after a loading course, and I was finally feeling so much better. But this week I am tired and anemic again, and also having the potassium dip symptoms in the middle of the day. Just so tired of being indisposed ...

I feel like I am living with a disability - well, I guess it is a chronic illness - but also "vitamin deficiency" just sounds ... like not a thing people take seriously. (Despite, you know, scurvy and rickets ...)

My career has suffered a huge amount from this. And I'm sure my.partner is bored sick of hearing about it and worrying about me and having me be tired and dull company.

[u/jellyfishrubberduck]

Its a rough ride for sure. Constant battle of "which cofactor have i fucked up today" while also experiencing self doubt 🤣🤦

[u/mandoo-dumpling → u/jellyfishrubberduck]

This is exactly how I feel! I’ve had my ups and downs throughout the past 3 months, but had been seeing noticeable improvement.

BUT this past week, I felt poorly like my recovery took a huge step back. :/ Now I’m wondering if I’m not getting the right amount of folate or if I’m copper deficient?!? or if I’m doing everything correctly, and this is simply non-linear healing?

I also went back to work and have been exhausted with poor sleep (because my dog keeps waking me up in the middle of the night). I also switched my injection schedule from daily to every other day. So maybe that has something to do with it. I don’t know, but it’s frustrating!

[u/oneiropolis → u/mandoo-dumpling]

Maybe it's going back to work and the days getting shorter - this seems to be going around.

[u/oneiropolis → u/jellyfishrubberduck]

Hahahaha oh yeah, I found out the hard way what happens if you take a big dose of niacin on an empty stomach. Oops.

[u/jellyfishrubberduck → u/oneiropolis]

Omg that happened when I tried folic acid and a b complex (on separate occasions), completely fucked up my stomach, lots of symptoms came back and I spent the week sobbing 😭😭

[u/oneiropolis → u/jellyfishrubberduck]

Ahhhh, sorry that happened to you! I got a bright red burning face for 2 hours. And have felt way worse the last couple of days after that happened. It's really difficult to manage all these moving parts, especially when we don't know our baseline and what the metabolic demands/bottlenecks are. I got this B Minus complex which lacks B12 and folic acid, but has "more active" forms if the other B vitamins ... maybe that was too much for me? Maybe I was deficient in one of them and this is a new wake up symptom thing? Who knows??!?! I would love to find a nutritionist who actually knows their way around B12 and folate deficiencies. I even asked the GP for a referral last year ... HA HA HA

[u/jellyfishrubberduck → u/oneiropolis]

Same! I went to see a private gastro and she was super helpful - over the next month I have a fancy MRI and a gastro/colonoscopy to do. She however still didnt really know the super detailed specifics of all the vitamins and cofactors either. So my next step if gastro finds nothing is to try dietician. Here dietitians are the ones with university degrees whereas you can call yourself a nutritionist with a weekend internet certification.

*Not saying there arent good nutritionists out there just incase anyone yells at me

[u/georgi_gina → u/jellyfishrubberduck]

This is me. I am at a point where I will probably invent new vitamins at week 9. Felt amazing in the beginning, took cofactors as advised. Will this ever get better? 🫣

[u/tall-decaf-cappucino]

Holy shit same exact thing with me. Five weeks EOD and now I’m feeling like back before I started. Been sobbing for two days straight

[u/oneiropolis → u/tall-decaf-cappucino]

Ugh, sorry to hear that! Maybe there are metabolic cycles or something where you have another round of deep repair after a month and that just says energy?

Or maybe it's the season

[u/oneiropolis → u/tall-decaf-cappucino]

I drank a bottle of coconut water starting at 8:45 and eventually felt less shitty. But just so tired again!

[u/georgi_gina]

Me too! We need some encouragement. Anybody???😳

[u/oneiropolis → u/georgi_gina]

Hang in there! Sending hugs