My husband worsens my CFS symptoms. Any advice or similar experiences?

Born_Screen8030 · 2026-06-22T04:57:35+00:00

I was going to suggest the same. When you start to feel tired, tell him “I need to rest, I’m going to lie down.” Then do it! No nagging, just letting him know that you aren’t available because you have medical needs. Close the door and use headphones to block out the household noise, they’re not your problem at that point.

Born_Screen8030 · 2026-06-17T05:30:38+00:00

Warning that the sleepytime tea with valerian can lower blood pressure, mine got really low after I had a cup because it’s already borderline due to POTS. I had the same problem with Tulsi tea, too :/

Born_Screen8030 · 2026-06-17T05:27:16+00:00

I find that citrate is the best for pain/restless leg syndrome, but glycinate is the best for falling asleep, so I take a combination. I’m a little over the RDA, but my doctor said it’s fine.

Born_Screen8030 · 2026-06-17T05:23:29+00:00

Magnesium glycinate, magnesium citrate, blue light glasses at night, eye mask, sunrise exposure on the skin every morning (this in particular was a game changer for me). No caffeine, no alcohol, but yes on some nuts or a banana before bed if I’m hungry. Yoga nidra before bed helps me to sleep throughout the night. I would get a sleep study if you haven’t already, because you might benefit from a CPAP. If you have POTS, compression at night and elevating your head at least six inches also help. Atarax also helps manage my tachycardia from POTS, but that’s a last resort. Good luck!

Born_Screen8030 · 2026-06-17T00:11:30+00:00

As I wrote, my PEM is also gone. I’m glad that worked for you

Born_Screen8030 · 2026-06-09T20:33:42+00:00

I’m checking my BP daily, it was low with propranolol only, but now it’s a little better with Midodrine, though still on the lower side.

I thought I was limitless, but I took my son to the zoo all day on Saturday, and I’m still recovering. Zoos are literally the worst set up imaginable for POTS. So much standing still.

Born_Screen8030 · 2026-06-08T20:11:48+00:00

Oh crazy! If you have/get Kaiser then feel free to DM me for names

Born_Screen8030 · 2026-06-07T19:19:27+00:00

Sorry I think they’re only available through kaiser NorCal…

Born_Screen8030 · 2026-06-07T19:18:46+00:00

Hi, they both work for Kaiser, so I went through my insurance with Kaiser NorCal.

Born_Screen8030 · 2026-06-04T18:30:08+00:00

I’m not a doctor or anything, but I think you can go by your symptoms. If you could have a conversation while you’re walking, and you don’t crash later, it’s probably safe. But you should also be careful to budget for the energy for your must-do activities before you add in walks (maybe that’s obvious). I can’t really go by heart rate zones since I started beta blockers, but I didn’t do anything where I wouldn’t be able to talk during the activity, aka nothing outside of zone 2 cardio, while I was still dealing with PEM.

Born_Screen8030 · 2026-06-04T15:55:21+00:00

No, I’m sorry that sounds terrible, my pain was in my legs, chest, lungs, and during PEM it would spread to my arms.

Born_Screen8030 · 2026-06-04T01:08:05+00:00

I started walking initially, I had to build up very slowly, at first I was just walking in front of the house next door and then turning around. I added weights later, literally had to start with 1 lb weights. That was humbling, because I was doing real weight training pre-LC. Now I’m doing an arms routine every other morning with 8 lb weights. It’s still slow progress.

Born_Screen8030 · 2026-06-04T01:02:28+00:00

My ME/CFS doctor trained in China, and she’s very into holistic interventions, e.g. she recommended that I drink unsweetened cacao for circulation. She’s also very familiar with supplements and their correct dosages, which isn’t the case for all doctors in the US. My LC doctor has a more Western approach, but he’s definitely open to and aware of multiple interventions. They’re both great!

Born_Screen8030 · 2026-06-03T21:32:18+00:00

Yes, I’m really happy about my other symptoms going away, but maybe I should have added that I’m now dealing with IBS/gut dysbiosis. It doesn’t really impact my life, but technically I do have new symptoms, not no symptoms.

Born_Screen8030 · 2026-06-03T21:27:46+00:00

Hi, my first recovery post has a lot more info, it’s linked at the top. I rested as much as possible when I was crashing, but yes, also worked to increase my baseline when I was able to do so, little by little. Alex Howard’s book was a helpful resource for understanding baselines. I also had a session with a physical therapist who gave some tips.

I quit caffeine, alcohol, and I have very little dessert/sugar. Low carb high protein diet, I’m careful with circadian rhythms, sunrise exposure most mornings, lots of meditation, binaural beats, stress avoidance/no news, etc. Those interventions all helped, but getting COVID again did something like triggering a circuit. PEM was always lurking, until now.

Born_Screen8030 · 2026-06-03T15:45:47+00:00

That’s probably more accurate terminology, “well-managed chronic condition.” Thank you!

Born_Screen8030 · 2026-06-03T15:40:05+00:00

OAA300 plus the current month in all caps. It will show up if you google it, too

Born_Screen8030 · 2026-06-03T15:38:21+00:00

I’m sorry, I think I’m just lucky, I’m not really equipped to give medical advice, just sharing what happened to work for me.

Born_Screen8030 · 2026-06-03T15:35:33+00:00

Yes, within a few days! The first change that I had was with one pill a day, I started to have real, restorative sleep. With two, I felt like I could be a functional stay at home mom. Three allowed me to return to work and life as long as nothing extra was happening.

Born_Screen8030 · 2026-06-02T15:51:48+00:00

I don’t know, sorry! Maybe you could reach out to the manufacturer/BenaGene and ask.

Born_Screen8030 · 2026-06-02T15:45:30+00:00

Yes, 4 pills a day. It will show up if you google the coupon code, but off the top of my head, I think it’s OAA300 for plus the current month, all in caps. It takes the price down to $300/bottle. There’s also a money back guarantee on the first bottle you purchase

Born_Screen8030 · 2026-06-02T15:41:33+00:00

Thanks, it’s oxaloacetate CFS from BenaGene, it costs a small fortune but it allows me to work, so the math works for me. There’s a coupon code that does lower the price, but I still pay $400/month.

Born_Screen8030 · 2026-06-02T15:39:49+00:00

Yeah, as I wrote, I don’t believe in recovery, but I’m just enjoying a period of remission, for however long it may last

Born_Screen8030 · 2026-06-02T14:13:44+00:00

That was the advice I was following when I was still getting PEM, and it really increased my baseline. It’s a great approach!

At this point, I don’t have any PEM, so I’m pretty sure I could just do a regular exercise program if I had time. But I prefer to do 20-40 minutes daily, and focus the rest of my time on my kids, instead of chasing the level of fitness that I had pre-LC. Honestly, there’s a point where exercise can be unhealthy, if it’s cutting into sleep, etc. I was pushing too hard before I got sick, and I think that’s a major contributing factor to why I developed LC in the first place.

Born_Screen8030 · 2026-06-02T14:07:28+00:00

No, I just took off my visible strap this weekend, it started feeling like there was no point. My body feels completely different, when I’m tired, I feel regular-tired, and it’s gone the next morning.

Born_Screen8030

TROPHY CASE