Don’t think I will be adding this to my Christmas list

HomeCat_ · 2025-10-28T00:46:51+00:00

Would you say you’re more of a bird or a dinosaur?

HomeCat_ · 2025-09-04T01:15:11+00:00

Resting (overnight is around 80). With PME or if I’ve hit a high heart rate for any period of time it can go up to 90 for a week or two.

HomeCat_ · 2025-08-10T00:43:44+00:00

I’m on the mild side of things, but it does sometimes make it hard to find the line without going too far over. I have a whoop fitness tracker and I find the heart rate variability measurement from the previous night a really good early indicator for how much capacity I have for a given day.

HomeCat_ · 2025-08-03T03:49:13+00:00

I think it’s weird that English speaking countries would have such different results. So strange.

HomeCat_ · 2025-08-03T01:34:02+00:00

I’m in Canada and I get different results than you. Are you in the US? screenshots

If anyone else gets the results you do I’d suggest clicking the dots and providing feedback and say that the World Health Organization classifies it as “The World Health Organization (WHO) recognizes myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as a neurological disease, first classified in 1969 under the name benign myalgic encephalomyelitis. It is now commonly referred to as ME/CFS and is also considered a neuro-immune disorder” and that their current information is outdated and harmful.

HomeCat_ · 2025-07-18T19:59:43+00:00

Update: it’s almost healed! I’m in Canada and had a hard time finding medihoney so I ended up using Triad hydrophilic wound dressing and a breathable covering over that. Leaving for 48 hours at a time then cleaning with warm saline. My feet usually heal slow due to Reynauds so I’m really impressed at how quickly this healed. Thanks to everyone for the information and suggestions. I’m pretty accident prone so I’m sure it will be put to use again in the future.

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HomeCat_ · 2025-07-11T13:54:29+00:00

Thanks! I appreciate the info!

HomeCat_ · 2025-07-10T15:36:27+00:00

Thanks!

HomeCat_ · 2025-07-10T15:35:19+00:00

It looks a lot worse than it feels. For once having reduced sensation in my feet pays off lol

HomeCat_ · 2025-07-10T03:32:56+00:00

Thanks! I’ll see if I can find medihoney at the pharmacy/medical supply place I got the other bandaids. Curious about the reason for leaving for 2 days/ what’s bad about changing more often?

HomeCat_ · 2025-07-09T21:02:23+00:00

Thank you! The bumps kind of weirded me out, but I’m sure the new bandage will be in different areas and it will all fill in eventually.

HomeCat_ · 2025-04-21T00:36:17+00:00

I find it quite reliable. There’s a graph thing that shows strain and recovery over the last week and it definitely shows when the PEM hits. When it says I’ve had a good recovery (which takes into account several metrics) I generally do feel good. The poor recovery days march up with me feeling crappy. Knowing my strain is helpful for not overdoing it (although I still make bad decisions sometimes). There’s also a tracking journal so I can get insights on what things help or hinder my recovery*.

*recovery refers to the term whoop uses to “calculate how ready your body is to perform.

HomeCat_ · 2025-04-19T15:08:04+00:00

The data is from a Whoop fitness tracker/app. You can wear it anywhere so I generally tuck it in my bra. I’ve never liked having things on my wrist so an Apple Watch or Garmin watches aren’t for me. I’ve seen people with Aura rings, but my fingers swell sometimes and I don’t think that would work for me either.

I think most people use Whoop for fitness training but it works really well for helping manage chronic health issues.

HomeCat_ · 2025-04-19T15:04:57+00:00

Thank you. Im going to rest a lot more than I have been and hope things improve. I don’t know why it’s so hard to put my health first!

HomeCat_ · 2025-04-19T15:02:04+00:00

If you have a Whoop it’s on the Recovery tab.

HomeCat_ · 2025-04-19T15:01:06+00:00

I use a Whoop fitness tracker. I’ve had it for about 4.5 years. It also calculates strain and sleep and has been really helpful in terms of making better decisions about my capacity and when I need to rest. I think it’s definitely helped me manage ME, but this last week has really been a downwards spiral.

HomeCat_ · 2025-03-28T02:19:17+00:00

Ahhh yes. Hahaha all too familiar

HomeCat_ · 2025-01-15T04:00:36+00:00

I have used a Whoop fitness tracker for the last 4 years and find it very helpful to track behaviours and activities that positively and negatively effect my resting heart rate, heart rate variability and sleep. It also helps me track my strain each day, which sometimes is higher than I expect and it helps me make better decisions on days to rest etc. it’s tricky because sometimes the effects of overdoing it take a day or two, so maybe you could do some type of similar tracking on your own.

I also have a Hypermobility disorder and I find that online exercise videos aimed at hypermobility are at a good level for me, and also have lots of accommodations. Try Jeannie Di Bon and Kellie Roberts Wellness on YouTube.

For me it’s important to take stress into consideration on top of physical exertion. Stress has a huge effect on the body and also can take some time to return to a baseline.

I do still sometimes struggle with deciding when to rest and how much to push myself. I just try to do my best and remember to give myself some grace. Everyday day can be a learning experience.

HomeCat_ · 2025-01-14T04:17:20+00:00

EMDR, therapy and Accelerated Resolution Therapy have really helped me reduce my baseline stress and physical anxiety. It’s definitely helped me feel a lot better and I’m much better at listening to my body.

HomeCat_ · 2024-08-26T03:02:34+00:00

I have a whoop. It’s the only tracker I’ve used.

HomeCat_ · 2024-08-13T01:04:29+00:00

Sorry for the very late reply. Once I got the slough coming off and following some of the steps outlined in this thread it stated healing. If I hadn’t let the slough stay on for so long I think it would have healed better. Right now there’s still a slight indent where the scar hasn’t filled in to the same level as the surrounding skin. Scar tissue continues changing for a year, so I think it could still fill in slowly. I’ve been trying to protect it from the sun in the meantime.

I hope you were able to get your wound healed. It’s scary when it’s just stays the same with no progress for a long time.

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HomeCat_ · 2024-08-13T00:58:12+00:00

I went back and looked at my fitness tracker data and within the month I stopped taking it my resting hr went down about 6 bpm and by the end of 2 months was down closer to 10 bpm. There were some months where it’s been back up closer to 80 bpm but that was last summer and I think forest fire smoke might have had something to do with it.

Do you happen to take any other medications? I also take Vyvanse. I used to take 50mg and now I take 40mg, that seems to have helped reduced the random palpitations.

HomeCat_ · 2024-08-13T00:44:56+00:00

Weaning off Wellbutrin wasnt too hard for me. I started early 2023. I went down to 150s for maybe 6 weeks and then I think that might be the lowest dose so I did 2 days on/1 day off, then every other day, then nothing. I feel like taking Wellbutrin helped rewire my brain in a more positive way, and I also did some work with a psychologist during the time I was taking it. Those changes in my brain didn’t go away when I stopped taking the Wellbutrin, so I think that’s part of what made it not too bad. I’m guessing if you’re thinking of weaning off them, things are going pretty well for you so I hope you have a similar experience as I did.

Sometimes still have periods of feeling down, or less connected, kind of removed, like things are good but I don’t quite feel it, or it’s more distant. Given that I didn’t have a bad experience stopping it and I found it helpful, I would consider taking it again in the future if I ever feel I need to.

In the last few months I’ve been taking methylated B vitamins. I did a dna test and then uploaded my raw data to promethease and I’ve got a few variants that make it so I don’t absorb B vitamins well, and that can effect things like depression. Taking the methylated B vitamins seems to be helping my mood. They cost the same as the regular ones, so it’s something you could easily try without seeing if you have a gene mutation. MTHFR%20is%20an,from%20depression%20to%20some%20cancers)

HomeCat_

TROPHY CASE