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differences in disease progression?

Aerose91

Senior Member
Messages
1,398
I've been wondering- Is there a difference between this disease slowly progressing on its own vs due to overexertion?

I've seen stories of people who have recovered from very severe cases of ME that slowly progressed over time, where as I constantly hear that over exertion in the beginning stages really ruins your chances of full recovery.

Is there any merit to this? Is there a different mechanism at work with over exertion vs the disease progressing on its own?
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I'm sure we would all love to know the answer to that!
It's so hard to know what to do for the best in terms of how far to push/rest, whether trying to keep on working is doing harm, whether lots of rest will actually help...

For me, I think that avoiding over-exertion is important. Doing too much definitely makes me feel worse. I don't know if it causes longer-term deterioration, but it isn't worth risking.

But playing the waiting game, not knowing if you are going to get worse or not is sooooo hard... I hardly dare think about getting better, as that seems like tempting fate somehow.

My feeling about it is probably summed up by a belief that the immune system can potentially improve its working, given enough time and enough 'support', but I don't know how to best do that support.

I know I haven't answered your question, but I wanted to add my musings as this is something I often think about.
 

Aerose91

Senior Member
Messages
1,398
@daisybell

Yes avoiding exertion is Definitely the best prescription for us but I'm wondering if the damage from over exertion differs in any way to what happens when one overexerts. I over exerted a couple times over a year ago and the effects have been permanent, I haven't recovered even 1% from them
 

Aerose91

Senior Member
Messages
1,398
@minkeygirl

He's on this board.

I don't understand why people on this board seem so solidified that ME is incurable and no one has ever recovered. If you are so sure of this why bother being here and trying treatments?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I have never looked at treatment for a cure. For me it's about slowing down the progression of the disease and improving the quality of my life. I imagine that's why many people are here.

People who have MS, Parkinsons and HD do all sorts of things to improve their life. Would you tell them not to?
 

Aerose91

Senior Member
Messages
1,398
Of course not, I believe everyone should be trying to improve themselves and their health. I just find it funny that as soon as anyone claims they have made a substantial recovery (which is rare, yes) or has regained a somewhat normal life the ME community screams out that they obviously didn't have ME and must have had something else. To me, that's a terrible mindset.

According to this article this very website is a scam and is only here for money. Should we all leave this website now?

http://ip-64-15-133-37.static.priva...enix-rising-me-cfs-forums-cort-johnson-scam-0
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
@Aerose91
I don't know how we can tell if any deterioration is due to over-exertion or not... I don't know anyone who doesn't over-exert at least sometimes! I know I do, usually because I find myself in a situation where I can't help it, or because my body doesn't want to do something today that was ok yesterday and by the time I know that it's too late....

Maybe the extent of the over-exertion is the important factor? A little, and we can recover, too much and we can't. I haven't read any info anywhere that helps with knowing this. Wouldn't it be great if we could know....
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Aerose, sorry I don't have an answer to your question - actually if i'm honest your question is of that type that for some reason I cant seem to understand today.

I have always thought that M.E is very similar to MS in that it seems to have different 'types' of the same thing, that mean different ways of progressing. I have noticed that exactly like MS we have patients who:

Progress steadily with no improvements, or rapidly over the years and just get worse. These patients tend to never have 'good' days or weeks. Their symptoms do not appear to fluctuate much at all. Equates to primary progressive in MS

Have a relapsing remitting course to their illness. Within this group some have occasional 'good' or 'better' days, weeks or even months. Some patients in this group seem to go into 'remission' either wholly or partly for months or even years before relapsing again. Some patients in this group have a tendency to improve slowly over time. Equates to relapsing remitting in MS.

The final group appears to be a group that started as relapsing remitting but becomes progressive after a severe relapse and either continue to progress downhill or never get back to original functioning. Equates to secondary progressive in MS.

For myself I have been mainly in the relapsing remitting - in fact I had a remission to near normal for nearly 10 years of this illness, but then relapsed seriously 6 years ago after a nasty bout of measles, pneumonia and pleurisy.

for the first few years of the relapse I was continuously ill with no improvement, but once again my illness has become slightly more fluctuating and I have occasional good days, although last year I had good weeks, this year this has been very limited.

My health is much worse this time around, as compared to when I was first ill, despite still having a tendency to slightly improve over time I have not got back to the very mildly functioning I was before.

This makes me wonder if, like with MS I have moved from the relapsing remitting group to the secondary progressive.

Just my meandering thoughts!

Justy.
 

Gingergrrl

Senior Member
Messages
16,171
Interesting thread and of course I have no answers. My experience is that no matter how someone got ME/CFS, it affects the autonomic nervous system and that seems to be the core commonality. Even though I often feel like giving up and that there will never be a cure, this board has given me hope and made me know that I am not alone. I am still trying new treatments because even if something could make me 50% better, I would take it!