u/NorthIntelligent6809

I’ve spent the last few weeks in rabbit hole after rabbit hole trying to find answers and I guess this is my way at coming to peace with it.

I was put on a 10 day course of pred 10 weeks ago. 7 days 40mg and 3 days at 30mg. And they’ve messed something up inside of me. On day two of the taper I had a crash that took a couple of days to recover from and then took it easy for the next week. However once I got back to normal life the following week I had another crash that took about 2 weeks to get back on my feet properly from and from there it was just a slow decline into what’s now coming up to a 4 week bedbound crash.

I don’t know what it’s changed or how long it’s going to take me to get back to normal. Initially when coming off pred I had brain fog, dizziness and disorientation but those have mostly subsided and In this crash I’m now getting a general off feeling, waves of nausea, occasional HR spikes, internal buzzing feeling, eye strain when staring at screens too long accompanied with mild mid brow migraines and then anxiety. Sleep hasn’t been great either and I haven’t really been able to nap because my body wakes me back up with adrenaline surges. I’m hoping these all start to fade again as the crash lifts.

Around April 7,8,9 I was feeling quite normal almost like my system was settling then I went for a drive and it flared everything up again. So I do think it’s something my body can crawl out of this.

I’m 10 weeks out and whilst some symptoms are settling but this crash tells me something is seriously off. I’m going to slowly work it out over the coming months and keep people updated but I wanted to post something here that may help others in the future.

If anyone has any advice of course that is welcome but I wanted to warn people about pred. I was a super healthy high achiever before this and now I’m bedbound living with my dad applying for benefits in the space of 2 months.

I’m based in the UK and feeling a bit lost on where to start getting proper help with this.
My GP hasn’t been very helpful and doesn’t seem to be taking it particularly seriously. I did see an endocrinologist who said it sounded like “Transient Autonomic Dysfunction”, but the crash/exertional side of things has made me question whether there’s some overlap with dysautonomia/PEM-type issues.
At this point I’m mainly trying to work out:

what sort of specialist/service I should actually be pushing for

what investigations are worth doing first

whether this sounds familiar to anyone else here

I’ve stepped back from work for now and moved in with my dad to focus on recovery. Financially I’ll probably need to look into benefits/support at some point as I also have a mortgage to cover.
Would really appreciate advice from anyone in the UK who has been through something similar or managed to navigate the NHS/private route successfully.

Timeline below:
Started prednisolone 40mg for 7 days, then tapered to 30mg for 3 days before stopping abruptly on GP advice.
During taper:
Day 1: blurry/foggy vision watching TV in the evening with pressure around forehead/between eyes

Day 2: felt mostly okay until a short 10-min walk triggered a crash after lunch — spent ~4–5 hours in bed but improved again in the evening

Day 3 (March 7): stayed in bed most of the day with palpitations, blurry vision and symptoms worsening on standing. Called 999 and GP advised stopping prednisolone completely

First 2 weeks off pred:
Main symptoms were blurry/foggy vision, disorientation, intermittent low energy and autonomic-type symptoms

I was still working throughout this period and could manage calls, office visits, short drives and trips out

Days 6–12 showed gradual improvement overall and I managed:
a 1-hour drive

brief gym visit

three half days in the office

By the end of that week, after repeatedly pushing activity, I crashed/set back with worsening visual symptoms and fatigue

This led to:
1–2 days mostly in bed

followed by a couple more partial recovery days needing extra rest

Weeks 3–4:
After that setback, I had a slower 2-week recovery period where I gradually improved again

I could still work, do calls, go on short walks and manage basic daily activities, but felt physically fragile and easy to flare up if I pushed too much

Over those two weeks I slowly got back to feeling relatively “normal-ish” again

Weeks 5–6:
4 days of near-complete rest over Easter produced significant improvement

Morning cortisol tested normal (~540 nmol/L around 1 month after stopping pred)

Brain fog, disorientation and visual symptoms improved substantially and I thought I might be close to recovering

April 7–9 I felt relatively normal at points and thought I might return to the office the following week

However, a 15-minute drive triggered a significant flare with heart palpitations, visual symptoms and increased sensitivity again

For around the next week I had a very tight/anxious/jittery feeling physically, which gradually eased again as I continued normal day-to-day activity

Weeks 6–8:
This is where I started noticing something closer to exertional intolerance

I could often have relatively normal mornings:
going out for coffee

doing work

short walks/trips

But later in the day I’d sometimes suddenly feel tired / nauseous and need to lie in bed for 1–3 hours before feeling closer to normal again

Capacity became increasingly inconsistent depending on activity levels

Week 8:
I also started having my most normal windows since this began

I had days where:
trips to the doctor felt normal

phone calls felt normal again

and at times I felt almost completely back to normal

At the same time, I was also getting periods where I’d suddenly need to lie in bed for a couple of hours before feeling okay again

On the Sunday before the larger crash, I felt unusually heavy/drained for most of the day but pushed through it without really realising what was happening

Shortly after this, I triggered what became a larger 3-week crash/setback

Current/main symptoms now:
a persistent “revved up engine” feeling internally

mild pressure/headaches between my eyebrows

feeling very sensitive to overdoing activity and my fight or flight feels stuck on as I can’t nap in the days as my body wakes me up

At the moment I’m mostly bed resting, but I can still:
shower

get up and make food/drinks

talk normally with my dad

slowly add small amounts of activity back in

Brain fog and most of the disorientation have improved significantly compared to the earlier weeks

Has anyone else had a weird internal “vibrating” / adrenaline feeling during a crash or flare? Mine comes in waves and seems worse after activity, conversations or trying to nap. Did it gradually ease on its own with pacing/rest or did you need full blackout rest (dark room, no stimulation) to get rid of it? Any tips appreciated.

Hey all, looking for some perspective from people who’ve been through this.
I’m on day 7 of a pretty rough crash. Days 1–4 were brutal, very unstable, big dips, felt like my system was all over the place.
Now things feel like they’re starting to balance out a bit:
I feel mostly normal when lying in bed
I can have conversations with my dad fairly normally
The intense dips have faded a lot (still get a drop later in the morning though)
I can get up to go to the toilet without it feeling impossible
Sleep is still messy — I get sleep inertia and sometimes wake feeling awful
My heart rate is settling compared to earlier, but still not fully back to normal
So it’s like I’m not “good”, but definitely not where I was a few days ago.

I’m trying to work out:
how to tell if I’m actually coming out of the crash vs just having a temporary improvement
when (if at all) it’s safe to start gently testing things again
how long people usually stay in this “slightly better but fragile” phase before increasing activity
I’m worried about pushing too early and undoing progress, but also don’t want to stay overly restricted longer than needed.

Any advice or personal experiences would really help — especially what signs you look for before increasing activity.

Hi everyone, I really need some advice or reassurance.

I’ve been in a pretty severe crash that seems to be getting progressively worse, not better, and I’m starting to get really worried.

About 8 weeks ago I stopped a course of prednisone, and since then I’ve had a gradual decline. At first it was manageable, but over time I’ve been crashing more easily and recovering less each time.

I’m now on day 4 of a major crash, and I’m basically bedbound — even getting up to go to the bathroom is difficult, and any small exertion seems to make things worse.

My symptoms right now:

Very low energy / heavy body feeling

Higher resting heart rate than normal

Feeling physically “on edge” / not settling

Crashes that feel deeper and longer than before

Not recovering back to previous baseline

I actually got so worried at one point that I called an ambulance, but nothing really came of it and I didn’t get any real help or answers, which has made this feel even more isolating.

I also live alone, which is adding a lot of fear. I’m starting to worry about:

How I’m going to manage day to day if this continues

My job and whether I’ll be able to keep it

Whether I might end up needing full-time care

What’s scaring me most is:

The downward trend over weeks

Feeling like I might have permanently lowered my baseline

Not knowing how to stabilise or stop things getting worse

I’m trying to rest as much as possible, but it doesn’t feel like it’s turning things around.

Has anyone experienced a crash like this that kept worsening over weeks, especially after stopping steroids like prednisone?

Did it stabilise eventually?

Is there anything that actually helped you stop the decline or start recovering?

I’d really appreciate any advice, experiences, or even just reassurance that this kind of situation can improve. I’m feeling pretty scared and unsure what to do.

Sorry for the chat gpt post but I just need some help

Thank you 🙏