Can one PEM crash really make someone permanently worse or go from mild/moderate to severe?

[hunter1899]

I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.

 

[Abrin]

I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.

Sadly, there is a lot of things that are both sad and scary about this disease since there is so much that is unknown.

 

[IThinkImTurningJapanese]

I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.

I've endured tens of thousands, they weren't the deciding factor in my overall condition.

 

[hunter1899]

I've endured tens of thousands, they weren't the deciding factor in my overall condition.

so crazy how this shit keeps us all guessing so much. Seems like the only thing that’s consistent is that it’s miserable. PEM sucks but I could at least weigh the risks if I needed to do something around the house. I’d just accept that I’d feel bad for a couple days after and get through it. The thought that it might make me worse permanently is a different story.

 

[IThinkImTurningJapanese]

The thought that it might make me worse permanently is a different story.

It's not our fault.

 

[PatJ]

From MEAction: GET (graded exercise therapy) and CBT (cognitive behavioral therapy) are not safe for ME – summary of survey results
"Following treatment, over two thirds (67.1%) of those who underwent GET alone reported deterioration in their physical health. Three quarters (75.4%) of those who underwent GET as well as CBT reported deterioration in physical health, and for the majority (55.9%) this was a major deterioration. Following roughly the same pattern as impact on physical health, a majority (53%) of those undergoing GET experienced a deterioration in their mental health. This increased to 62.9% when the respondent had also undergone CBT."

Note though, some people do experience some benefit from CBT in that it can help them learn to cope in certain ways, but it's no cure. And a few rare people actually benefit from GET but because ME/CFS is sometimes misdiagnosed it's possible those people had a similar condition instead of ME/CFS.

From what I've read, it seems the people who get permanently worse from PEM are most often the ones that keep pushing mentally and/or physically, or are pushed by family and doctors. Rest and staying within your personal energy envelope are incredibly important for managing ME/CFS.

 

[hunter1899]

From MEAction: GET (graded exercise therapy) and CBT (cognitive behavioral therapy) are not safe for ME – summary of survey results
"Following treatment, over two thirds (67.1%) of those who underwent GET alone reported deterioration in their physical health. Three quarters (75.4%) of those who underwent GET as well as CBT reported deterioration in physical health, and for the majority (55.9%) this was a major deterioration. Following roughly the same pattern as impact on physical health, a majority (53%) of those undergoing GET experienced a deterioration in their mental health. This increased to 62.9% when the respondent had also undergone CBT."

Note though, some people do experience some benefit from CBT in that it can help them learn to cope in certain ways, but it's no cure. And a few rare people actually benefit from GET but because ME/CFS is sometimes misdiagnosed it's possible those people had a similar condition instead of ME/CFS.

From what I've read, it seems the people who get permanently worse from PEM are most often the ones that keep pushing mentally and/or physically, or are pushed by family and doctors. Rest and staying within your personal energy envelope are incredibly important for managing ME/CFS.

Just to make sure, is MEaction talking specifically about ME or are the combining ME and CFS as one condition?

Also, would PEM busters like Hip listed prevent this permanent damage? Or do they just mask the symptoms?

 

[Hip]

I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.

Generally no, I although I have heard some rare cases where ME/CFS patients get a tiny bit worse after each crash.

What might make your ME/CFS worse however is if you try to exercise or exert yourself during a PEM crash. Pushing yourself while crashed is not a good idea.

There are many stories in the UK of young children with ME/CFS taken away from their parents by social services, brought into hospital, and then coerced into doing exercise. This is usually against the wishes of the parents and the child, but for children under 16, medical authorities can take children from their parents.

The halfwitted psychiatrists in the hospital that coerce these kids to do exercise are not even aware of PEM, and they push the children to do more and more graded exercise therapy (GET), even if they are crashed from the last exercise session. This often makes the ME/CFS permanently or semi-permanently worse.

 

[hunter1899]

Generally no, I although I have heard some rare cases where ME/CFS patients get a tiny bit worse after each crash.

What might make your ME/CFS worse however is if you try to exercise or exert yourself during a PEM crash. Pushing yourself while crashed is not a good idea.

There are many stories in the UK of young children with ME/CFS taken away from their parents by social services, brought into hospital, and then coerced into doing exercise. This is usually against the wishes of the parents and the child, but for children under 16, medical authorities can take children from their parents.

The halfwitted psychiatrists in the hospital that coerce these kids to do exercise are not even aware of PEM, and they push the children to do more and more graded exercise therapy (GET), even if they are crashed from the last exercise session. This often makes the ME/CFS permanently or semi-permanently worse.

So Hip what do you make of the study references above?

 

[R.Little]

The general thinking (largely agreed upon both by patients and CFS specialists) Is that pushing and crashing on a regular basis can contribute toward the progression of the disease. It's sort of like post-concussion syndrome, in that sense. If you continually push up against your limits, your limits may contract and you may get sicker.

In terms of one particular crash dramatically changing a person's condition, yes, it absolutely happens. It happened to me. It happened to Jen Brea. But it's likely a cumulative event. As in, other things were likely building up prior to that one large crash.

All you can do is take care of yourself and hope for the best. Sometimes people spontaneously get worse or spontaneously improve. You can do all the right things and still get sicker. You can be a little bit careless and still sometimes improve. It's a difficult reality to bear, but in the grand scheme of things, it's the same as everyone else on this planet. Sometimes bad things happen; we have a limited degree of control. All you can do is your best! ❤️

 

[PhoenixDown]

I've made myself permanently worse more times than I can remember. I advise being very cautious.

 

[Rufous McKinney]

What might make your ME/CFS worse however is if you try to exercise or exert yourself during a PEM crash. Pushing yourself while crashed is not a good idea.

I did a personal GETS experiment-three days in a row, attempted to walk around one small city block.

On day three- I was clearly crashing from Day ! and tried to get around the block- but only made it to three dirveswauys away. There: I became quasi- paralyzed and could hardly get back.

The crash lasted 60 days and I went down- a couple of functional points.

My daughter the other day declared- well your Anxious- you panic and return back. YES: I WAS PARALYZED by this phone pole. Its- a very strange experience.

 

[hunter1899]

I've made myself permanently worse more times than I can remember. I advise being very cautious.

can you tell me more about your experience with this?

 

[BrightCandle]

I went from fairly mild mostly more painful headaches to severe fatigue issues with 3 crashes.

The first was off the back of GET that my doctor had me doing, I had done a series of minor crashes before and this time he really pushed me to get on a do a complete 20 minutes at above 70% heart rate. This coincided with a vestibular training session from another department and that was a trip across the city and BAM I was knocked out like nothing I had seen before for about 2 weeks, it hurt a lot and it dramatically reduced my range to walking in my local area, from mild to definitely can't do cardio exercise at all and limited walking range. I didn't have a diagnosis of ME/CFS at this point, they were still treating me for depression and anxiety with GET and drugs. It's the lithium that took my guard down and turned off my self-defence against their negligence.

The second I did earlier this year after I had a Fybro diagnosis where I was trying to work out if I could repair what was a growing problem with my knee and back after a winter of not moving much from the prior crash. I had a few minis crashes where I gradually worked out what stretching and strength work I could do and how far I could walk. I had gone from being able to travel the city to being stuck to maybe a mile. These crashes had only pain impacts for a day or two and I just needed to rest and I worked out my limit. I stepped it back once I found the Reddit for CFS and learnt about pacing properly (the NHS definition given to me was actually GET they are tricky like that!).

The third crash I did stupidly about 10 weeks ago knowing a lot better I shouldn't have done it. I was gradually improving in my function and stepped up my strength work a bit and still had some lower back and knee issues with all the rest I was still doing. I was having increasing problems with weights and recovery lifting with them, mainly just putting them down I was injuring myself and I found James Gorge's videos on using resistance bands and bought some. The first use of them was fine, I was sporadic and gentle and followed a similar pattern to weights where I spread the work out over hours and did 1 to 2 sets of a few exercises. The second time I followed the normal weight pattern like an idiot, I was doing 30 seconds under tension and 90 seconds downtime and I did that for over an hour, I was just enthused after the first session and shown how much easier it was on the body, I just kept going when I shouldn't have. I stopped because my body gave out, it was done, my first good workout in ages. The crash lasted 6 weeks of being mostly bedridden, sleeping in 2-hour chunks and 2 hours waking and I was in a lot of pain. I gradually recovered back to being housebound and the positional tachycardia has backed off quite a lot now previously standing was a major heart workout. I can go a few hundred metres and potentially I might be able to leave the house again in a few weeks time if I keep improving although I doubt I can make it to the local shops which is a 1-mile round trip. I have a more CFS friendly resistance training scheme alongside my back and knee exercises all based on the theory of lactic acid build-up passed 60% max heart rate which seems to be working for me. So long as I don't go above 60% max heart rate for very long (I have an alert) my body at least isn't crashing. I do need to take care of mental capacity use as a separate issue but the heart rate monitoring seems to be working to keep me within my limits. I wrote about in the low impact exercise thread the other day.

So can one crash change your life? Certainly did for me. Over the space of a year I had 2 big crashes and a period of pushing the limit a little with some minor crashes and the end result was mild to severe condition now tending back to the bad end of moderate.

 

[Hip]

So Hip what do you make of the study references above?

The survey? I have not seen it before, but its results look similar to two ME Association surveys that found GET could be harmful and make patients worse.

 

[PatJ]

Just to make sure, is MEaction talking specifically about ME or are the combining ME and CFS as one condition?

I don't know.

Also, would PEM busters like Hip listed prevent this permanent damage? Or do they just mask the symptoms?

I don't think it's possible to answer with any certainty. The reasons that PEM reducers and shielders work for some people is based on educated guesses, and, as far as I know, the reasons for PEM, and permanent damage, are still based on speculation and limited evidence.

Results aren't consistent for each PEM reducer or shielder being used. Hip compiled his list based on patient reports so it isn't intended to be a list of things that work for everyone.

People with ME/CFS often find that something works for a time and then stops working, or that they need to take regular breaks to maintain effectiveness. Others find something that works consistently for them but not for others. The same thing happens with PEM reducers and shielders. As an example, for years I used to rely on d-ribose for more energy and reduced PEM but it doesn't have the same effect anymore.

 

[ljimbo423]

Also, would PEM busters like Hip listed prevent this permanent damage?

I don't know of any evidence of PEM or ME/CFS causing permanent damage. I have heard of people that have had a lasting worsening of their symptoms but that doesn't mean they did permanent damage to their bodies.

I think pushing oneself too hard too often can cause changes in the body that can make someone much sicker but I don't think those changes are caused by permanent damage.

I was severely sick with ME/CFS for several years and now am fairly mild. So whatever was making me so sick was reversible. There wasn't any permanent damage that was making me severely ill.

 

[Seven7]

I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.

Yes has happened to me a few times trying to exercise. I have pushed really hard and set myself back permanently and never recover the points of energy I lost.

 

[hunter1899]

So for everyone who said yes it’s happened to them, can you describe your specific condition? What viruses you tested positive for? So you have fibro, hashi, etc? CFS or Me.How long you’ve been sick, etc. Trying to understand if there’s a pattern to how PEM affects us permanently. Even though I know real patterns in our world are hard to come by.

 

[Abrin]

So for everyone who said yes it’s happened to them, can you describe your specific condition? What viruses you tested positive for? So you have fibro, hashi, etc? CFS or Me.How long you’ve been sick, etc. Trying to understand if there’s a pattern to how PEM affects us permanently. Even though I know real patterns in our world are hard to come by.

Sadly, a lot of us have been looking for patterns for decades now.

The only thing that seems consistent about this illness is the inconsistent way it affects different people.