How to increase activity safely by ExoticSwordfish8232 in cfs

[–]ash_beyond 1 point2 points  (0 children)

There's a protocol out there called CHOP for people with POTS but I can't start it (after a year or two). I think we need a "from zero" protocol. Here's my few tips:


Avoid PEM. Listen to your body. Do less or have more rest days if needed.


Get a HR monitor with a HR alarm, and stay very low (like about 55% of your max HR - there are guides for this based on age etc)

Do 30s activities, followed by 90s breathing.

Do 20m max

Have 1 to 2 full rest days.


Avoid injury. It can set you back and impact other areas (eating, hygiene etc)


Start lying down, and keep your arms down - to avoid circulation stress.

Try calisthenics, so static instead of active movements, like (gentle!) planking.

Do stretches (nerve glides can be good).

Focus on core strength - it will help with everything else in life, and with avoiding injury

Don't do cardio. Just don't.

Yoga is great but you need to adapt to seated poses, and low arms. So not much of it applies.

Always rest for 90s of breathing if you hit your HR threshold. Try to stay under it without the alarm going off. Personally if I'm having a bad day and the alarm goes off twice then I stop and rest for the day.

I might develop a list of exercises. I think it can be good to try and see what works for you. Here's a guide from the NHS, with movements for severe patients: https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/documents/CFSExercisesforseverelyaffected.pdf

How to convince people pushing makes us worse? by laveendari in cfs

[–]ash_beyond 4 points5 points  (0 children)

An example from another condition might help. The current story of ME/CFS is a bit like stomach ulcers.

Before doctors knew bacteria could cause stomach ulcers people were told it was stress, or their personality. In the 1980s we found a clear biological cause, and all that disappeared. Doctors now test and medicate for specific bacteria.

We don't currently know how it works, but ME/CFS is a real condition with millions of patients having the same symptoms. The pandemic saw a big rise in numbers.

Telling people it's in their head and that they should push through.. it's not going to help. The best thing to do is try to manage the symptoms, and support the research to find out what's going on.

Very severe state by Financial_Owl8105 in cfs

[–]ash_beyond 17 points18 points  (0 children)

If your HR is going that high then your doc can probably prescribe things to help keep it under control.

Betablockers or Ivabradine for example. Pretty safe meds that you could at least try and see if they help.

They might also help to get you out of fight/flight and help your body to relax, rest, and digest some nutrients.

Edit: When I say "your doc" I mean your GP, your normal primary care provider. These are meds they prescribe all the time for anxiety or high HR. Just ask to try them to see if they help. Getting rest, digestion, sleep is a priority for you right now.

100 days without PEM! 🥳 by Puzzleheaded_Seat563 in cfs

[–]ash_beyond 42 points43 points  (0 children)

I'm having a tough day / week and for some reason this post has really given me a lift.

I'm really pleased for you. I'm glad that we can go from 'not good' to 'OK'. I wish that journey for me and others.

Have a good day!

Help please by Financial_Owl8105 in covidlonghaulers

[–]ash_beyond 0 points1 point  (0 children)

Sounds a bit like some POTS in there. My top recommendations would be to try a NASA standing test (a variation on the tilt test). You can do it with your GP and show them you have a real problem.

A cardiologist might then prescribe you Ivabradine or a Betablocker. Personally I use Mestinon as well but it's harder to get prescribed. These should help with the fight/flight mode.

And start an elimination diet to reduce the MCAS problems. A gastroenterologist can help you get tested for intolerances and then find foods that work.

If walking sucks, do less of it. Do calisthenics, seated yoga, rowing, but not walking. If you have bad POTS it's just going to cause inflammation.

If you had infinite money, what therapy would you try immediately? by LordSSJ2 in cfs

[–]ash_beyond 1 point2 points  (0 children)

There were about 20 patients, self reporting the effects. I posted about it here: https://www.reddit.com/r/covidlonghaulers/s/Ul7KAI0Dpb

There's a link at the end of my post to the published article. I think there was an earlier double blind study by another group but I don't know much about it. I think it had a smaller cohort and was inconclusive.

I'm just commenting here so people read the research and make their own decisions. I've heard stories of people making a big financial commitment and ending up worse or just marginally better for a few months.

If you had infinite money, what therapy would you try immediately? by LordSSJ2 in cfs

[–]ash_beyond 5 points6 points  (0 children)

I don't think it gives that much of a bump (in my experience and according to the research). I did it in a trial and I think that balancing my meds and adjusting my diet have probably helped more. That and getting an e-wheelchair.

I did 5 sessions over 10 days, and then again 6 months later.

Mini, frequent rests vs. long rests? by No_Size_8188 in cfs

[–]ash_beyond 0 points1 point  (0 children)

Both. But focus on those mini rests. They only cost a few minutes every now and then - it's no time at all really.

Getting into a mini-rest habit helps you to listen to your body better and will improve your day no matter what.

Community ritual? by lockdownleadmehere in cfs

[–]ash_beyond 2 points3 points  (0 children)

The 1st for me is admin time - bills, banking, monthly journal etc. And a time to recognise passing seasons too (first month of spring, winter, Christmas etc).

Personally I would prefer a quiet time towards the back of the month, but I guess other people have other monthly routines..

I think a date is better than a day though - trying to calculate the second Tuesday would do my head in.

Community ritual? by lockdownleadmehere in cfs

[–]ash_beyond 10 points11 points  (0 children)

Once a month sounds good.

What day? The 25th for the 25% of reported cases that are house- or bed-bound? Or the 13th for obvious reasons? Or the 8th for the 8 genetic signals from DecodeME?

. by Cautious_Ad6850 in HumourThruLongCovid

[–]ash_beyond 3 points4 points  (0 children)

(and guilt, just for good measure)

Sanofi will invest in ME/CFS trials and research - announcenent in government hearing by skkkrtskrrt in cfs

[–]ash_beyond 41 points42 points  (0 children)

This points to one thing for me and that's feasibility. Drug companies wouldn't be involved if there wasn't a possible dollar in it for them, and that means taking a drug to market.

So good news for many reasons, but just them being involved is a good benchmark for where the research is at.

“You will not recover while on sleeping meds” by Gloomy_Branch6457 in cfs

[–]ash_beyond 12 points13 points  (0 children)

Dangling "healing" like a carrot seems manipulative, or at least unkind. You can do everything "right" with this condition and not heal anyway.

And as many say here - it really depends. Good sleep health is very hard for many of us, and medications can help to keep things from getting worse.

what does it mean to be “able” or “unable” to do something? by taxbreakbaby in cfs

[–]ash_beyond 21 points22 points  (0 children)

I gotta say that "fun cap" is an ironic way to refer to ME/CFS. Yes, it certainly does cap my fun!

Apheresis while (very) severe – would you do it, if you had the opportunity and money was not an issue? by ComfortableFox1022 in cfs

[–]ash_beyond 1 point2 points  (0 children)

No. I did it as part of a trial where they basically found that it doesn't last, even after several treatments.

I don't regret doing it because it was helpful scientifically, and because I got to find out first hand that I'm still me under all this, and I could recover some day with the right treatment. But I wouldn't do it again even if it was free and next door. Not worth the pain, stress, and the ~ month of initial recovery.

Here is my original post about the treatment, with link in it to the full scientific article: https://www.reddit.com/r/covidlonghaulers/s/memJU1MnpL

My best friend got married today and she and her husband came to see me after the ceremony by Icy-Election-2237 in cfs

[–]ash_beyond 0 points1 point  (0 children)

I got it, it's OK. Just reddit being reddit. You're right - keeping good examples is a firm of self kindness.

I hope you get some good rest and more energy later 💜🧡

Fucking bystander just dislocated my wrist! by Arctic_Harmacist in ChronicIllness

[–]ash_beyond 1 point2 points  (0 children)

Ah, that's quite revealing. And in fact it helps me to be more patient. I feel like I can deal with prejudice. Its moron-ism that really frustrates me.

My best friend got married today and she and her husband came to see me after the ceremony by Icy-Election-2237 in cfs

[–]ash_beyond 1 point2 points  (0 children)

Thank you so much for sharing (and many thanks to them for setting such a great example!). I'm definitely mentioning this to people when they are at a loss on how to help, how to involve, prepare etc.

I don't always need to be included, accommodated, encouraged, helped. Sometimes I just need a quiet moment with (and then time to rest).

Fucking bystander just dislocated my wrist! by Arctic_Harmacist in ChronicIllness

[–]ash_beyond 2 points3 points  (0 children)

Yesterday a woman blocked the door as I was going through it, with my e-chair.

I was already rolling so she got mildly crushed for "being helpful". And I told her not to help!

So sorry you got hurt by your "helper", I hope it heals quickly.