Help please - can't stop crashing

[GlassCannonLife]

Stupidly had a shower on Friday night.. Yesterday was a little bit worse feeling and today a little worse again.. Apparently that is far beyond my reach for the moment.

Strict bed rest, meditation, and trying to be positive.

 

[Hip]

Responding to more hydrocortisone currently. Up to 40 mg.. Maybe hospital didn't give enough..?

Although low-dose corticosteroids may be fine for ME/CFS (low dose is typically something like hydrocortisone 5 to 20 mg daily), higher doses (ie, the normal medical dosing for corticosteroids) can actually cause ME/CFS, if given during the acute phase of a viral infection. See this post.

And normal doses of corticosteroids when taken for more than a few days can make long-term ME/CFS worse.

 

[GlassCannonLife]

Although low-dose corticosteroids may be fine for ME/CFS (low dose is typically something like hydrocortisone 5 to 20 mg daily), higher doses (ie, the normal medical dosing for corticosteroids) can actually cause ME/CFS, if given during the acute phase of a viral infection. See this post.

And normal doses of corticosteroids when taken for more than a few days can make long-term ME/CFS worse.

Thanks Hip, haven't been on them since around that day but not sure how much of a cortisol boosting effect the 500 mg pregnenolone is having.. Trying to decrease asap but can't do less now unless I get a feeding tube and stop going to the bathroom

 

[Wishful]

Trying to decrease asap but can't do less now unless I get a feeding tube and stop going to the bathroom

I wonder if this is like having a badly broken leg and using powerful painkillers 'so I can still get around'. It's hard to know whether it's worsening your condition if you don't try going without it. Then again, maybe going off it would make your long-term situation worse. Another possibility is that trying to go off it for a few days will have a rebound effect that convinces you to go back on it, whereas if you stayed off it longer, you'd get better. Not enough evidence or knowledge to figure out which is the best course.

I checked your first post on this. It sounds like the more pregnenolone you started taking, the worse you got, and the more you needed. Can you get your hormone levels checked? Maybe something is seriously abnormal there.

 

[hapl808]

I wonder if this is like having a badly broken leg and using powerful painkillers 'so I can still get around'. It's hard to know whether it's worsening your condition if you don't try going without it. Then again, maybe going off it would make your long-term situation worse.

A good point. And it took us decades to really figure out with painkillers that it 'might' be doing more harm than good in many people, but even now we don't really understand the mechanisms I believe. That's an area where significant resources have been expended, but for us there's very little attention so we're all trying to figure it out on our own.

 

[GlassCannonLife]

I wonder if this is like having a badly broken leg and using powerful painkillers 'so I can still get around'. It's hard to know whether it's worsening your condition if you don't try going without it. Then again, maybe going off it would make your long-term situation worse. Another possibility is that trying to go off it for a few days will have a rebound effect that convinces you to go back on it, whereas if you stayed off it longer, you'd get better. Not enough evidence or knowledge to figure out which is the best course.

I checked your first post on this. It sounds like the more pregnenolone you started taking, the worse you got, and the more you needed. Can you get your hormone levels checked? Maybe something is seriously abnormal there.

Thanks - it seems more closely linked to how intensely I'm crashing and I was getting worse for a while there.. Seems more normal now. Have stayed on 500 mg for two weeks now and have been resting as much as possible (speaking minimally, barely getting up etc) and have had some improvements in the frequency with which I felt like I'd crash and my overall HR and HRV. I flared up a tiny bit with some bad sleep and overdoing it one day in this period and had the stats get a little worse and the subjective feeling as well.

I think it is mainly acting an an anti-inflammatory and pseudo benzo but yeah.. Will still move down as soon as I can. Yes bloods would be good but when you can't tolerate seeing people more than 30 s without starting to crash it is a little difficult to get oversight.. Hopefully when I get more stable. Ideally will not be bedbound either..