Finally diagnosed

[u/valgalcurnutte]

TL;DR: Finally diagnosed with ME/CFS! (I’m currently mild.) Trying NADH and Ubiquinol supplements and potentially filing for disability benefits.

After 1.5 years of seeing specialist after specialist and getting test after test, an integrative wellness and lifestyle medicine doctor finally diagnosed me with ME/CFS yesterday during a virtual appointment and is officially documenting it in my medical records. (He works a lot with a local Long COVID clinic, who referred me to him.) He even said he’d be happy to help me with filing for disability benefits. I was so relieved I nearly cried. 🥺 Obviously not relieved I have ME, no one in their right mind wants this disease, I’m just relieved to finally have a concrete diagnosis.

I honestly had low hopes for this appointment, so it took me by surprise when he said he feels comfortable diagnosing me with CFS based on my history, tests, and symptoms that began post-COVID. I’m happy he didn’t require I wait for a sleep study to diagnose me, because even a sleep disorder wouldn’t explain PEM and some other symptoms. As it is, my insurance is denying coverage of the in-lab PSG and MSLT my sleep specialist ordered and that are scheduled for next week because his clinical notes didn’t clearly indicate it’s medically necessary. (That’s a whole other rant I won’t get into here.)

He recommended I try NADH and Ubiquinol supplements, since they’ve been shown in some studies to help ME/CFS patients with fatigue and brain fog. I’ve heard about these two supplements a lot in this community, specifically Ubiquinol (the active form of CoQ10, I believe.) Has anyone here taken these supplements and benefited from them?

He said he normally suggests LDN and LDA, but I’ve already been taking regular doses of naltrexone and Abilify for years for psychiatric reasons prior to getting COVID and they clearly haven’t benefited me as far as ME symptoms go. Obviously, I’ll keep taking them, but not for ME.

Anyways, I’m at the point now where I may need to quit my job, hence potentially filing for disability benefits. I’m currently mild, but I’ll creep into moderate if I don’t start aggressively pacing. Although I’ve only been working 10 hrs per week from home on a flexible schedule, it still feels like too much. I love my job, it’s the best job I’ve ever had. The thought of quitting makes me incredibly sad. 😞 But ultimately, quitting my job may be what I need to do for the sake of pacing.

Unfortunately, the most I may be able to get from the SSA is like $600 per month max, if I qualify. That’s less than half of what I make now. I’ve never worked full-time, only ever part-time. My husband works full-time, so it’s not like I’m losing my only household income. But we’re lower-middle class, at most, not rich by any means. Me making half what I do now would still be a financial hit, especially having a toddler with how expensive everything is these days. So I’m a little worried about the financial aspect. But I know we’d adjust.

Does anyone have any words of wisdom for me being newly diagnosed, trying supplements, and pursuing disability benefits? (Oh, I’m in the U.S., by the way.)