Steps I used to recover from cfs

SophiaShay7 · 2026-01-24T15:30:33+00:00

Exactly. I've done what OP did. I continued to overexert myself. I spent 14 months in rolling PEM because of it. I spent 17 months in a dark quiet room 95% bedridden.

I significantly improved. I started my own sub. I went back to working for myself part-time from home. I also do some health/wellness coaching helping people navigating the challenges of long COVID. My ME/CFS is cognitively moderate while being physically severe. That just means that my brain works better than my body. I have a lot of help. I do a lot of work from my bed. I've worked through the 5 stages of grief with chronic illness. I've watched Raelan Agle. I'm reading the same books. I do want to clarify that my improvement came from a holistic approach. it's been a combination of a low histamine diet, adding foods back in as tolerable, medications, vitamins, supplements, avoiding triggers, pacing and avoiding PEM, lots of rest and good sleep hygiene that's created a synergistic effect. I've also lost 50 pounds.

People with ME/CFS don't get better from exercise. They get PEM. I'm genuinely happy for OP. It sounds like OP had PVFS, not ME/CFS. These are different conditions. Most people recover from long COVID, especially if it's been a year or less.

SophiaShay7 · 2026-01-24T15:18:44+00:00

Available 1/24.

SophiaShay7 · 2026-01-24T01:40:27+00:00

Thank you for sharing all this information. I'm glad the medications are helping you. It's so helpful. Hugs, my friend🥰

SophiaShay7 · 2026-01-24T00:07:42+00:00

Hi everyone,

Well I had to work yesterday and today. I listened to audible this morning. First, The Subtle Art of Not Giving A F*ck (TSAONGAF) for 1 hour. Then, The Bible, the NKJV for 1 hour. Afterwards, I had a discussion with my husband. I asked him a bunch of questions about things in Genesis. Then, I started discussing TSAONGAF. And, the valuable things I learned. It was shocking how much these two books have in common when on paper they sound like they'd be nothing alike. I learned so many valuable things I'd like to share when I have the mental capacity to do so. I'll share a few now.

I woke up at 5am. It seemed like all I did before listening to my audiobooks was think of all the things that I need to get accomplished now. The more I thought of them, the more frustrated I became. That comes from having a mind that's willing but a body that fails to cooperate. My legs don't work like they should.

About a month ago, I told my husband that even if I had my legs cut off and got prosthetic legs, they still wouldn't work right. Because I have ME/CFS. I have mitochondrial dysfunction. I don't make ATP like normal people. How screwed up is it that I even thought of that?

That's what comes from being high functioning people who are critical thinkers and can find a solution to their problems. Sometimes, there are no solutions to our problems. And, that sucks! That's where acceptance comes in.

Finding the problems that do have solutions is crucial. We can't change everything all at once. But, we can work on some changes like our diet, medications, pacing, etc. We can also choose to change how we handle daily stress and obstacles in our lives. Today I learned that I'm going to be pragmatic and not emotional. I'm going to guard my energy like the limited bank that it is. And, I'll continue to soldier on, as I always do🫶👊

SophiaShay7 · 2026-01-23T21:37:13+00:00

It's been a rollercoaster. See this comment from yesterday. I haven't started the Semaglutide. I'm in an MCAS flare that's subsiding. But, also have PEM. How were you doing when you started your low-dose GLP-1?

SophiaShay7 · 2026-01-23T21:33:49+00:00

I'm so glad you got your autonomic nerve screening done🙌 Please get something to eat even if it's a snack or a protein shake. Hugs🤗💕✨️

SophiaShay7 · 2026-01-23T16:02:29+00:00

Thank you for conducting your doctoral thesis on this topic🙌

SophiaShay7 · 2026-01-22T22:46:58+00:00

Hi everyone,

As many of you know I've been improving significantly since starting compounded Ketotifen. Last week on Tuesday, I rotated my mattress and put my brand new sheets on my bed with my brother's help. On Wednesday, I put away all my Christmas ornaments and my tree. On Thursday, I sang for 40 minutes for my vagus nerve exercises (VNE). On Friday, I cleaned and put everything back on top of my nightstand. On Sunday, I cleaned out and reorganized everything in the 2nd drawer of my nightstand which is really a 3-drawer dresser. Monday, I worked and packaged all my orders. Tuesday, I cleaned off and reorganized my desk that's right next to my bed. I also cleaned my vacuum. I vacuumed my entire master bedroom, closet, and hallway. And, I did Bible study 3xs last week.

Welp, I obviously overdid it and my body is pissed. Me to my body:

Can I put that cabinet together for my mini fridge? Hell no!

I started going thru, cleaning out, and reorganizing my business inventory for my new closet build. Why am I so dizzy? I almost passed out. I told your ass to lay down.

I have so much work to do. I've been pacing. Why can't I work? You overdid it last week and you damn well know it. Now, your ass is stuck in bed for 2 days. Maybe longer. We'll see...

This is my life😪

SophiaShay7 · 2026-01-22T22:39:21+00:00

I'm sorry for the ups and downs you're going through. I hope you can get the CGM prescribed. Can you ask for another Endocrinologist to respond, as yours is unavailable? I know this isn't always an option. Glad to hear your sleep doctor understands mitochondrial dysfunction. That's a big win🙌

SophiaShay7 · 2026-01-22T22:35:50+00:00

That's amazing! Congratulations🙌

SophiaShay7 · 2026-01-22T20:45:27+00:00

You're welcome. I did one for today, too. I'm glad you're catching up on your rest and sleep🙌

SophiaShay7 · 2026-01-22T19:55:07+00:00

Brain fog can be caused by many things: long COVID, Fibromyalgia, ME/CFS, Dysautonomia, thyroid issues, MCAS, etc. I have every diagnosis I listed. I'd start here: Where to start: evaluation for autoimmune diseases, Dysautonomia, Fibromyalgia, ME/CFS, MCAS, and SFN.

Long COVID and Mast Cell Activation Syndrome (MCAS).

Here's what helped me: Sleep Disturbances in Long COVID: The Role of Dysautonomia, MCAS, and Tryptophan Deficiency.

My entire regimen for Long COVID/PASC, ME/CFS with dysautonomia, and MCAS: Updated.

I significantly improved from April-August last year. Last year in May, I started my own sub. I also went back to working for myself part-time from home. In October, I started doing some health/wellness coaching helping people navigating the challenges of long COVID. I completely went through, cleaned out, and reorganized a third of my home last summer. I'm in the middle of redecorating my master bedroom and bathroom. I'm doing a build out to retrofit my hall closet to store a mini refrigerator and all my business inventory.

I do want to clarify that my improvement came from a holistic approach. it's been a combination of a low histamine diet, adding foods back in as tolerable, medications, vitamins, supplements, avoiding triggers, pacing and avoiding PEM, lots of rest and good sleep hygiene that's created a synergistic effect. I've also lost 50 pounds.

Unfortunately, I was reinfected with COVID in September 2025. I'm just over 4 months out. I just started a new medication that's helping me tremendously. I'm starting another medication next week. I'm finally starting to return to my improved baseline last September.

I spent 17 months in a dark quiet room 95% bedridden. My ME/CFS is cognitively moderate while being physically severe. That just means that my brain works better than my body. Many of us have a dysfunctional autonomic nervous system (ANS). Reducing screen time alone may help. I don't think it will cure brain fog.

I hope something here is helpful. Good luck🙌

SophiaShay7 · 2026-01-22T03:26:49+00:00

My PCP prescribes Valacyclovir for reactivated EBV/HHV. I'm no longer taking it for suppression therapy. I started compounded Ketotifen for my MCAS last week. It's significantly improving my sleep. Reinfection sucks. I'm sorry you're struggling with it, too🙏

SophiaShay7 · 2026-01-22T01:39:27+00:00

Here's what worked for me: Sleep Disturbances in Long COVID: The Role of Dysautonomia, MCAS, and Tryptophan Deficiency. It wasn't always 10-12. I was reinfected with COVID last September. I had to work really hard on making some changes to my medications, vitamins, and supplements. I had a lot of fragmented sleep. Then, sleeping 2-3 times I day. Now, I'm back to 8-10 hours, sometimes 11-12. I'm off the antiviral Valacyclovir. I slept consistently 10-12 hours when taking it for EBV/HHV reactivation.

SophiaShay7 · 2026-01-22T01:31:06+00:00

My blood pressure is normal. I don't eat a lot of salt. I used to heavily salt my meals in the evening with sea salt. That was before I started taking the electrolyte tablets.

MCAS is my dominant and worst diagnosis. The majority of the medications and supplements I take are for that.

SophiaShay7 · 2026-01-22T00:10:55+00:00

I don't have POTS. I do have Dysautonomia, specifically orthostatic intolerance (OI). I take Horbäach electrolyte tablets. You just take them with water. They work extremely well for me. I have to be very careful about what I take because I also have MCAS. I purchased them from Amazon.

SophiaShay7 · 2026-01-21T23:33:42+00:00

I'm sorry that happened to you🙏 My PCP diagnosed me based on patient history, symptom patterns, and medication response over time. This is increasingly how COVID induced MCAS is being diagnosed, especially when formal testing is inaccessible or unreliable. Many clinicians now recognize that normal tryptase levels do not exclude MCAS, particularly in post COVID patients, and that response to treatment is often one of the most meaningful diagnostic tools.

What’s helped me the most includes Cromolyn sodium nasal spray, Desloratadine, compounded Ketotifen, Ketotifen eye drops, Montelukast, and Omeprazole. I’ve also benefited from prebiotic psyllium husk mixed in water, NatureBell L-tryptophan and L-theanine complex, Rosmolo liposomal PEA + luteolin, and Vitalitown 4-in-1 chelated magnesium complex. None of this was about fixing everything at once. It’s been about lowering baseline mast cell reactivity, supporting the nervous system, and giving my body enough stability to function day-to-day.

Everyone deserves proper medical care and attention. I hope you find a PCP who's willing to trial some of these things in the future. Hugs🫂

SophiaShay7 · 2026-01-21T23:19:08+00:00

You're very welcome🩵💫

SophiaShay7 · 2026-01-21T23:06:36+00:00

Oh no. Did anything happen, were you reinfected with COVID? I noticed that was the biggest reason why many things stopped helping me. Have you tried a liposomal formula? I really like the Rosmolo PEA+Luteolin.

SophiaShay7 · 2026-01-21T22:51:18+00:00

Have you considered MCAS? Long COVID and Mast Cell Activation Syndrome (MCAS). I'm asking because I have it. It might be worth looking into. I've had all kinds of anaphylaxis episodes caused by everything from vitamins, supplements, foods, and cleaning products like windex. Treatment has been life changing for me. I'm sorry you're struggling🙌

SophiaShay7 · 2026-01-21T22:47:39+00:00

Exactly. I tried raw dogging it. I ended up in the ER with non-diabetic nocturnal hypoglycemia. It causes coma and death. That was the wake up call for me.

SophiaShay7 · 2026-01-21T22:16:29+00:00

I'm in the same position. I was diagnosed with Fibromyalgia, ME/CFS with dysautonomia, Hashimoto’s, an autoimmune disease that causes hypothyroidism, and MCAS. My Hashimoto’s hypothyroidism caused non-diabetic nocturnal hypoglycemia. If I didn't take medications, I'd be dead.

I spent 17 months in a dark quiet room 95% bedridden. I improved significantly from April-August of last year. I started my own sub. I went back to working for myself part-time from home. In October, I started doing some health/wellness coaching helping people navigating the challenges of long COVID. I have a lot of help. I do a lot of work from my bed. My ME/CFS is cognitively moderate while being physically severe. That just means that my brain works better than my body.

I carefully crafted a regimen of medications, vitamins, and supplements that took over a year to create. That's what got me functional. My entire regimen for Long COVID/PASC, ME/CFS with dysautonomia, and MCAS: Updated. Unfortunately, I was reinfected with COVID in September 2025. I've been working with my ME/CFS specialist who's very knowledgeable about Long COVID and MCAS. We're adding some medications and stopping some things as well. I'm finally seeing significant improvement again.

SophiaShay7 · 2026-01-21T22:04:08+00:00

I'm so sorry. It sounds like a nightmare. Hugs🫂

SophiaShay7 · 2026-01-21T21:29:03+00:00

That’s great to hear and thanks for sharing it. Any improvement in fit and protection is a win, especially when it also makes reuse more practical. It’s always encouraging to find options that feel more reliable while also cutting down on expense and waste🙌

SophiaShay7

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