Thoughts inducing PEM

[Sizzle]

My daughter is in a severe crash now for over a month and completely bedbound.
She thinks or knows that her thoughts worsen her PEM. She describes it as her head is burning.
Don't know what to do or what to tell her.

Could she be right ? Any tips?

 

[nerd]

I'm sorry you have to go through this. Do you mean thoughts like certain ideas with emotional gravity or thoughts like general cognitive exertion, like reading, reasoning, projecting?

 

[Sizzle]

I would say the latter
Literally she said "I can't stop thinking and this causes PEM"
She tries mindfulness (app) , but you can't do this all day

 

[BrightCandle]

When I was that severe anything emotional anything requiring any concentration of thought definitely made me worse. If you read about Witney Defoe and his mothers care they have a signal for whether anyone can be in the room as he is the best judge of when he can tolerate presence. Noise, smell anything can make it worse.

Just trust her and do as she wishes, she definitely isn't lying about this I have also experienced it, I was like that for about 10 months last year.

 

[bensmith]

Yes thoughts can push me too. Sorry friend.

 

[ljimbo423]

My daughter is in a severe crash now for over a month and completely bedbound.
She thinks or knows that her thoughts worsen her PEM. She describes it as her head is burning.

Stressful thoughts often make my symptoms worse, and if I have them long enough, I can go into full on flare. Which for me, feels just like the flu. Pain and fatigue being my worst symptoms.

ME/CFS researcher Jarred Younger thinks that immune cells in the brain- (microglia) become sensitized or "primed" from infections, stress, etc.

This primed state causes them to be very sensitive to stimulus from stress or other forms of stimulation, and causes them to be chronically activated, causing low grade brain inflammation.

He believes this activates the sickness response in the brain, which is what causes ME/CFS symptoms.

He is looking into chronic immune system activation in the body, as the cause of this microglial activation and low grade brain inflammation. Whenever I have a flare, the lymph nodes under my jaw become swollen.

Which is a clear sign of immune system activation in the body. So I think he's looking for the answer in the right place by looking to the body for chronic immune system activation.

This low grade brain inflammation could be why your daughter feels like her head is burning.

From the reading I've done, stress can also activate these microglia in the brain, which could cause a worsening of symptoms. This is what I think causes my symptoms to worsen from negative thoughts or stress.

I think anything that can help her reduce her stress, would probably help her symptoms. I understand that's a very tall order for most of us, especially those of us that are severe.

 

[Woof!]

As a DNA-driven "problem-solver" (really, my family has old videos of me telling people what to do and how to do it when I was 3 years old! ) I have to work hard at times to turn off an inner analytical monologue capable of driving me deeper into physical fatigue and brain fog.

My go-to remedies (note: my ME/CFS is moderate, as opposed to severe) depend upon my physical or mental aptitude in the moment.

- If I'm brain-foggy but I have a bit of physical strength, I'll go outside for a short walk or do a relatively easy but fun task. Moving physically, even if it's only a little bit, helps me to "move on" from over-thinking.

- If I'm down-and-out because I'm physically drained but not too brain foggy, I entertain my brain with engaging fiction, using a lucite dish display holder to keep my book propped up and open. My first choice as to where to do this is outdoors (for all the wonder getting outside has to offer), with my second choice being in bed.

- If reading is too much for me, but I can still sit upright, I enjoy a few episodes of a favorite comedy on TV (some favs are MASH, Fraiser, Scrubs...), just enough to get my brain to move on.

- And when I've got to lie down and my inner monologue won't leave me in peace, I'll listen to a good radio documentary or a book on tape while doing some in-bed stretches...anything to stop my brain from exhausting analysis-paralysis!

Your daughter is right - thinking too much can be really, really draining!

 

[Wishful]

Cognitively-induced PEM is a real thing. So yes, certain patterns of thought could worsen PEM. I suppose PEM could in turn set the stage for the kind of thinking that worsens PEM. As Woof! suggests, finding a way to change the thought patterns might help. Games, puzzles, entertainments, simple physical activities (I'm thinking knitting or other handwork). Some might trigger PEM themselves, so experimentation would be required, as with everything else about ME.

 

[hapl808]

Personally thought patterns don't seem to induce PEM for me, but any cognitive tasks certainly do. Ironically, even good cognitive tasks (a pleasant phone call or a fun computer task) will trigger PEM, yet a super negative thought loop doesn't change my energy level at all. For me, it seems more how 'stimulating' the cognitive task is rather than any qualitative aspect.

 

[wabi-sabi]

I have noticed thoughts (or thinking too hard) triggering PEM too. It's certainly a challenging one to deal with. One thing that help me is watching really mindless youtube, preferably something that I've seen many, many times before so it doesn't require thought to process. Not sure if your daughter can tolerate a screen, but if she can, watch something mindless and soothing. For me, watching takes a lot less effort than reading.

I also find task switching can help. Watch TV for 5 minutes, then stare out window at birds for 5 minutes, or as long as she can keep herself from thinking. Repeat

 

[Violeta]

Would this be considered "stress"? Because if you look at it as stress, it might be easier to find a solution.

 

[hapl808]

One thing that help me is watching really mindless youtube, preferably something that I've seen many, many times before so it doesn't require thought to process.

I also find it can be a bit boring but really helpful to watch things I've already seen many times.

 

[Sizzle]

Thanks guys, she is very severe now so tasks switching of any kind will be a problem I'm afraid
will suggest the "mindless yt", though she will probably say this is not possible

@BrightCandle if I somehow gave the impresission that I don't believe her, this is not the case
It is strangely comforting for me to learn that you can still "recover" from a severe crash after 10 months. She crashed first week of November

Another thing that's starting to worry me.
If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?

 

[BrightCandle]

@BrightCandle if I somehow gave the impresission that I don't believe her, this is not the case
It is strangely comforting for me to learn that you can still "recover" from a severe crash after 10 months. She crashed first week of November

Sorry just me being brain fogged and in pain from the vaccine, lots of nasty side effects the past few days. I reread, you didn't.

If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?

Yes. Unlike someone who is medically in a coma she will be moving about somewhat so is unlikely to suffer genuine muscle wasting, I lost muscle but it wasn't a severe loss because I could still turn about in bed and occasionally go to the toilet and get down to the floor and roll about and I did some exercise throughout on pain points.

What I did increasingly suffer from was back problems and I had to shim my lower back with towels very specific amounts to reduce the pain this was causing me and its been a lasting problem for the past year too which no amount of strengthening has really repaired. A normal towel wasn't much use, it was too think I needed to be millimeter accurate and hard was better than soft in this regard I had to find ways to turn those muscles off.

It is very likely something will go wrong like this and alas there wont be a lot you can do about it as physiotherapy is largely going to be out of the question and in my experience doctors will not come visit you at home to try and do anything to help ease the pain. I ended up with a bunch of D shaped foam pillows, a wedge for bringing my legs or body up and a U shaped head pillow, all memory foam as I tried to get comfortable and reduce the damage. If there are complaints about particular discomfort do something early on about them, thin athletic towels helped a lot to make custom minor adjustments for my back and the D shaped and U shaped head pillow were both essential in the end, but the wedge wasn't really usable for me and one of the D shaped pillows was too soft and the one I use(d) is also too hard, you will go through different solutions.

For now I wouldn't worry about it too much, it took 6 months before this really kicked in but its something to keep in mind that if it starts to happen you may need these items to reduce the pain. Watch out for the suicidal thoughts this level of pain will cause because the messed up brain chemistry combined with this level of suffering and inability to move its a dangerous period from my own experience.

 

[hapl808]

Watch out for the suicidal thoughts this level of pain will cause because the messed up brain chemistry combined with this level of suffering and inability to move its a dangerous period from my own experience.

Also good advice. When I'm in a crash, my world view becomes extremely dark. Part of this is the reality of the crash and the life that you're 'living', and part of it is the brain chemistry where the 'type' of darkness is very different than anything I experience even one day after 'recovery' from a crash. Hard to describe I guess, but I agree it's a dangerous period.

 

[wabi-sabi]

If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?

This is the painful question. Just my opinion here; take it if it helps and leave it if it doesn't. Being a couch spud isn't healthy, mentally or physically. @hapl808 described the darkness quite well and @BrightCandle described the physical pain. But, and here's the big but, being inactive is much, much, much less dangerous than the harms of overdoing anything when you have ME/CFS, much less when you are severe and also in a crashed state. That's just the very mean way the disease works. There are just so many wonderful, healthy, and life affirming things that we are no longer able to do because they make us worse.

The BPS cabal (and our body shaming wellness culture in general) would have us all believe that deconditioning is the very worst thing that could happen to a person and in fact is so bad, that it creates disease. This just isn't true. Rest is the best medicine. I strongly suspect that your daughter wants to do more right now than she is able to do, and finding a safe way for her to deal with that is a good way for you to help her. Sadly, resting is incredibly boring.

On the task switching (your daughter sounds more severe than I, so this might not be helpful)- this is not a way to increase cognitive load and think, oh no, now I've got to manage one more thing. It is a recognition that if you can only watch yt for 5 minutes without crashing, then you watch just 5 minutes and then stop and do something else. Also, different mental actitivities seem to work different areas of the brain, reading vs watching for example- task switching is a way to deal with the intense boredom without taxing your brain quite so much. The reading part of your brain can rest while you birdwatch and vice versa.

Sending you good thoughts. This is such a mean disease and you are doing such a good job trying to help your daughter.

 

[lenora]

I just saw this on TV on last evening's news and I'm wondering if it may help your daughter. When I have a severe crash, my lymph nodes also swell to quite large proportions....there were years when I had them swollen regularly. Amazing enough, they've now disappeared altogether.

Anyway, back to your daughter.....to help cancer patients not lose their hair, they've found that ice packs over the head (I wouldn't do it for longer 10-15 min. on, take off and then back on) may help stop the burning feeling she has.

I've found the use of Ace ice packs to be invaluable during my time with this illness. Most drugstores carry them, they're fabric wrapped and don't freeze into a solid block so are easy to use. Useful for extreme pain, they numb it and if I had a burning head, I would definitely try it there. It may even distract her from her thoughts for short periods of time....give her some time off.

I have these packs in all different sizes and really haven't found anything that even comes close for pain relief. Wishing both of you well. Yours, Lenora.

 

[Woof!]

"mindless yt", though she will probably say this is not possible

If by yt, you mean youtube, some of the videos available are smart, educational and just plain funny (and laughter is good for what ails us). Some of my favorites of late are from The Hornet King, a young man who removes hornet nests for people professionally. He digs them out and takes them home to feed his beloved chickens. Sweet guy; lots of fun. No pesticides needed!

It is strangely comforting for me to learn that you can still "recover" from a severe crash after 10 months.

Yes, it's absolutely possible! I was couch-bound and considered serious for almost 2 years before I began to get some function back. Several decades later, I'm now considered moderate.

Another thing that's starting to worry me...If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?

I think you are right to be concerned about this, since our bodies need a degree of movement "on the outside" for things (like our lungs and GI tract) to move properly "on the inside." For this reason, gentle stretching, range-of-motion sequences, energy-appropriate weight-bearing sequences and shifting of position are VITAL for future physical and psychological strength. Have you consulted a good physical therapist and occupational therapist about this? They were both a godsend for me! The best of PTs and OTs know how to pace things so bedbound patients don't feel pressured to do more than they can. At the same time they know how to replace destructive behaviors and practices with supportive ones that keep weak patients from being their worst enemies. Just talking from my own experience...

 

[Sizzle]

Thanks a lot !

@BrightCandle @Woof! She likes to know what you did to get from severe to moderate
Rest ?
meds?

If others have an answer, please do tell

 

[ljimbo423]

She likes to know what you did to get from severe to moderate
Rest ?

If others have an answer, please do

I have improved my ME/CFS from severe for several years, to fairly mild most of the time, and I've had ME/CFS for 44 years. So I believe that people can improve dramatically from ME/CFS, even if they've had it for decades.

The thing that has helped me the most is treating gut dysbiosis with a low carb diet. If I start eating 150-200 gms of carbs a day, within 2 weeks, I'm spending most of my days in bed again.

After many years of research, I'm convinced that gut dysbiosis and increased intestinal permeability (aka-leaky gut) are the root cause of my ME/CFS, and carbs feed inflammatory bacteria in the gut.

Right now I very rarely take naps, rarely spend any time in bed, except to sleep and I only need 8 hours of sleep a day. I use to sleep 14-16 hours a day, and was only able to shower once or twice a week, at best, when I was severe. I eat a high fat (olive oil, nuts, avocados, peanut butter, etc.) low carb (about 80 gms/day) and moderate protein diet.

I've also found supplements like B-1, Branched Chain Amino Acids, coq10 and Alpha lipoic acid, all help to increase my energy. But, all of these supplements become useless if I increase my intake of carbs to 150-200 gms a day. Because I end up spending most of my days in bed again if I do.

This is one of the reasons I think dysbiosis and leaky gut are the root cause of my illness.