Worst systemic pain ever, plus 4 month virus.

[Guest guest]

Hi all.

Going through a very hard time at the moment. As some know been dealing with

major adrenal issues since late 2008. That has been the biggest challenge of my

10+ years of CFS/FM so far. 2.5 years on hydrocortisone and I still havent found

a stable dose. I'm better than I was in the begginning thats for sure (hospital

every week with crashing blood pressure).

However, cortisone in general has worsened nearly every aspect of my CFS.

Brain/cognitive function almost came to a halt when I started it, and that

hasn't changed. Fatigue much worse, immune system, light and noise sensitivity

much worse, etc.

Before the adrenal crash I used to at least go out about once a day by myself in

the car, just to shops & post office etc. I'd be ok, get home be exhausted, just

lay down still for 2+hrs then gradually come around. Now I have been mostly

housebound pretty much for the whole time since being on HC. I can only do

anything really late at night when no one's up and nothing's open. I can cook

though and do minor housework between things.

I think it's likely due to having very poor drug tolerance / processing (poor

liver detox/low gultathione etc) in general as to why it doesn't work so well. I

have to have it to live however. I dose about 8 times a day and am STILL very up

and down between doses. Im trying to work out a way to improve this aspect as if

I could get that stable I think many aspects may improve.

Getting to this year and the point. I got a major virus (flu like) late January.

This required doubling the HC dose almost, up to 70mg (which is very high if you

know about HC doses). This happens with anyone with adrenal insufficiency /

addisons if they get a major bug, it always requires a double or even triple

dose. Was very rough. So was at the high dose for 2 weeks then as it passed got

it back down to my usual 40mg. However the virus didn't totally leave so it

seemed.. for the next few months I've still had a sore upper respiratory, left

lung and throat. Taking a strong combination of echinacea, andrographis, olive

leaf etc 4x a day is the ONLY thing that has helped it be any less severe. Soon

as I stop them it gets much worse.

Now in early May, I got ANOTHER major virus/flu, requiring raising HC back up to

70mg and some days 80mg for another 2 weeks. It's only just started turning

around the last 4-5 days. I'm back down to 50mg HC at the moment, but I'm a

complete wreck from all this.

Also the other point of this post - im not sure if it's due to the viral

activity, but my systemic pain - muscle & joint etc (fibro flares), has been

worse than ever in the course of 10 years. Generally before this, it's usually

been say, a flare somewhere in the morning, then again in the afternoon - pain

builds up to a point then gradually releases over 1-3hrs of resting, (as fibro

flare cycles go for most).

This year though, the flares have been getting longer and more intense. Many

days I will get the worst flare of systemic burning pain, everywhere, and the

body will stay stiff and terribly painful sometimes 12+ hours straight without a

break, and has at times left me in tears. I'm usually very patient and tolerant

(especially seeing as I can't tolerate any pain meds), but this has been

incredible. Sometimes it's been there almost 24hrs, and if that pain doesn't

release, I cannot function to do anything, the body and brain are too " stiff " so

to speak.

So that's what's going on at the moment. Quite concerning considering its such a

significant increase in symptoms in a short time. I assume it's possibly the

viral activity, but what would make this last so long unrelentingly? That's the

ever frustrating question.

Not sure if anyone will be able to help, but thought i'd share. Having done so

many years of research and tried/trying so many treatments, I'm just so

frusrated & not getting where I need to be.

~Chris.