Instead of ME/CFS, could some have simple schizophrenia? Its symptoms: anhedonia, blunted emotions, brain fog, apathy, social withdrawal

[Rufous McKinney]

Doing something I like has never boosted my energy levels or prevented crashing. Actually, it makes things worse

very similar here

I traveled extensively when I was more mild, but I was also sick constantly because I continuously outpaced what I could do.

I was continuously crashed, despite TRYING to pace, for three months, while visiting The Funnest Place In the World.

It's a remarkable torture. Driven to the entrance of The National Park, I made it to the first embankment. Maybe I made it 400 feet away from The Parking Lot.

Is that it?

The odd thing about my version of ME includes- I was so happy to reach that embankment; it has provided me with several YEARS of enjoyment. (I took twenty pictures of rare ferns)

My life is so limited, that this tiny field trip was so WONDERFUL
anyway.

Merely BEING at my daughters home: crashes me. I'm expected to speak and converse and have a cup of coffee, sit with others eating some breakfast. Just THAT gives us enuf to CRASH DAILY. Then, I had to walk further: 100 feet further. To get food, to get hot water for my hot water bottle. My lymph system improved from moving around, and I developed in tense POTS to replace it. Then it took me like a year to sort of return to that baseline place.

 

[hapl808]

It's a remarkable torture. Driven to the entrance of The National Park, I made it to the first embankment. Maybe I made it 400 feet away from The Parking Lot.

Is that it?

The odd thing about my version of ME includes- I was so happy to reach that embankment; it has provided me with several YEARS of enjoyment. (I took twenty pictures of rare ferns)

My life is so limited, that this tiny field trip was so WONDERFUL
anyway.

Haha, as I was reading it my first thought was, "Wow, I would be happy to make it to a parking lot." Then I read your, "life is so limited." It's very true, and tragic that we have to keep contracting our lives and goals, then sometimes get people suggesting that very contraction is the cause of the illness, rather than a regrettable downstream effect. I resisted for years changing my life for my illness, and it was a huge mistake as I crashed repeatedly in Paris, in London, in Hawaii, in Singapore, and so forth. I really wasn't someone with 'limiting beliefs' or whatever - just the opposite. I should, however, have accepted a few more parking lots and a few less trans-oceanic adventures. Now I have no choice because even making it to the kitchen spikes my HR to 120 and I need crutches or a wheelchair to make it there.

I remember for years reading this forum and thinking stories like mine were histrionic, exaggerated, or just people who 'liked' their chronic illness. Because I was sick all the time, but still managing to do so much, I assumed that was because of my superior willpower, as opposed to a random combination of symptom severity, genetics, illness trigger, etc.

I've said it ad nauseam here, but it bears repeating: if I couldn't understand people with severe ME/CFS when I was mild or even moderate, then I can't really expect healthy people to understand it at all.

 

[almost]

So I am wondering whether cases of ME/CFS that involve symptoms such as anhedonia, blunted emotions, social withdrawal and apathy, might actually involve simple schizophrenia.

In my case, I would say definitely. In fact, just recently I had this discussion with my wife, who admitted to me for the first time that after she first met me, she suspected I was a high-functioning schizophrenic. I was discussing how it would seem I was lucky, given my history to gut disfuntion, not to have been afflicted with that. That revelation was revealing, both to my initial thought, and to how lucky I am that she didn't run at that point.

I have a lifetime of all the symptoms you have listed, except the last (concentrating); in fact that's always been the ace in the hole for me. My analytical mind has kept me employed in better positions than I otherwise would, I believe. I problem solve well, which has been useful, and is again as I wrestle with my own case.

 

[Rufous McKinney]

"Wow, I would be happy to make it to a parking lot."

I am well aware that many of us would have never gotten to that parking lot.

Because I was sick all the time, but still managing to do so much, I assumed that was because of my superior willpower, as opposed to a random combination of symptom severity, genetics, illness trigger, etc.

I can understand a bit of what you mean. It's this odd reaction, so fundamental to our human nature. You see somebody limping, swollen, crumpled and infirm. We are understanding.

Somebody else "looks fine" (I can fake it for five minutes sometimes). Says they can't do this or that. We aren't very understanding when we "can't see it". (yet I can't see my neighbors cancer...)

 

[datadragon]

The known ability of propionate (shared with butyrate) to promote dopamine and norepinephrine synthesis by enhancing the transcription of the tyrosine hydroxylase gene , may be the mechanism underlying these molecular and behavioral effects. Butyrate increases the enzyme that produces dopamine (tyrosine hydroxylase) which converts L-tyrosine to L-dopa https://pubmed.ncbi.nlm.nih.gov/16165221/ https://www.sciencedirect.com/science/article/abs/pii/S0006899306032719

Locally, SCFAs promote gut health by modulating energy regulation, glucose metabolism and lipid homeostasis and regulate intestinal barrier integrity by enhancing the expression of tight junctions (particularly butyrate, The improvement of intestinal hyperpermeability by central butyrate or intracisternal orexin-A was blocked by cannabinoid 1 or 2 receptor antagonist https://www.sciencedirect.com/science/article/pii/S1347861321000384

serotonin (5-HT) potently inhibits orexin neurons through activation of 5HT1A receptors (5HT1ARs) https://pubmed.ncbi.nlm.nih.gov/30555297/ The “central fatigue hypothesis” was proposed with 5-HT as the modulator of fatigue. The augmented activity of the dopaminergic system in response to exercise initiation appears to be due to an increase in the central levels of calcium, which increases the activity of tyrosine hydroxylase through the activation of the calcium-calmodulin system. In contrast, the decrease in DA concentration that occurs as exercise continues likely results from the inhibitory effects of 5-HT. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5649871/

Orexin-A up-regulates dopamine D2 receptor and mRNA in the nucleus accumbens Shell. The results show that intracerebroventricular (i.c.v.) injection of OrxA increases both gene transcription and protein content of D2R but fails to modify D1R. This effect was also confirmed with OrxA infusion in NAc/Shell. Our results demonstrate for the first time that OrxA induces up-regulation of gene and protein of D2R in NAc. https://pubmed.ncbi.nlm.nih.gov/33170427/

 

[Inca]

I had autism as a child and several symptoms when it was at its most intense are similar ..only difference being autism usually shows from a much younger age and Schizophrenia generally not until a person hits their teens. My symptoms were most severe between the ages of 2-7yr old.

Fortunately as I didnt have severe learning difficulties on top I did manage to catch up (academically) and went to mainstream school and even got to university! However the peri-menopause hit me hard and again socialising was the first thing to leave me drained. (Though I did still enjoy it I couldn't cope with it for long or daily before it becoming too exhausting).

After this last stroke I definitely seem to have the Anhedonia more as a symptom and lost all interest in social stuff..just could not deal with it at all. I'm sure the isolation from the pandemic probably made that worse as by the time of the stroke I had already had to be isolated for around 2 years.

I actually had every one of those symptoms after the last stroke

• Anhedonia (reduced ability to experience pleasure or reward from normally enjoyable activities)
• Blunted emotions
• Apathy
• Social withdrawal (lack of interest in social interactions and withdrawing from social contact)
• Reductions in speech
• Difficulty in concentrating during conversation, and an inability to concentrate on even simple tasks (ie, brain fog)

As far as reduction of speech is concerned though I have physical difficulty getting the words out (Apraxia) ..it wasn't just that I could speak but didn't. I know what I want to say and can say it clearly in writing so its not Aphasia..as is more common with stroke. (in which case they often lose the ability to read and write I never did).

I think there are several neurological conditions where alot of the symptoms overlap or are identical. The problems with society today because of social media is everyone is an 'armchair critic' who thinks they have a right to judge other people and make their opinions into a blog or YT stream to get likes, followers and such! It's a very toxic culture with little compassion for what others are going through!

 

[Inca]

I found this

"Late-onset schizophrenia occurs at age 45. Scientists think it might be timed with a woman’s decreasing estrogen as she enters perimenopause.

“The idea is that estrogen exerts protective effects so during the time when women have a lot of estrogen in their bodies, they are protected in ways from developing schizophrenia,” Donovan says.

The estrogen theory would also suggest that women with lower levels of estrogen are more vulnerable to the disease, including women who have naturally lower levels of estrogen as well as postpartum women experiencing hormonal fluctuations.

The estrogen theory is still being explored, and although Donovan says many scientists support it, they want to study it more and “prove it beyond a shadow of a doubt.”

from here

https://www.discovermagazine.com/mind/why-schizophrenia-is-different-for-women


another...Menopause & Schizophrenia

https://www.healthywomen.org/content/article/menopause-and-schizophrenia-connection


Could this be why there's higher number of women around menopause age that may have symptoms that could be either menopausal (Late-onset) schizophrenia or ME/Chronic Fatigue syndrome?

 

[Rufous McKinney]

After this last stroke

I'm sorry you've had to deal with such difficult things.

What type of stroke did you have? my husband had a left brain severe one, and currently is aphasic but speech is improving gradually.

Im so curious what has truly happened to him. Because he can't tell me, in detail. whats going on...how did it affect his memory? There is so much I do not understand....but hope it improves wiht more time.

 

[Inca]

I'm sorry you've had to deal with such difficult things.

What type of stroke did you have? my husband had a left brain severe one, and currently is aphasic but speech is improving gradually.

Im so curious what has truly happened to him. Because he can't tell me, in detail. whats going on...how did it affect his memory? There is so much I do not understand....but hope it improves wiht more time.

HI...very sorry to hear about your husband. My last one was a Thalamic stroke caused by undiagnosed high blood pressure. It was apparently mild! ...and was missed mainly because one symptom can be Ataxia and I already had Ataxia since my 30's! (so already a wheelchair user).

From this one it was like I suddenly developed ADHD with problems with attention and focus, problems with executive functions (been able to plan, work out what to do in what order...cooking a meal for example...so everything is ready at the same time). Some memory issues...facial recognition..(failed to recognise neighbours until they said their name etc).

I'd had a cerebellar stroke in my 30's ..just purely physical symptoms that time..splitting one sided headaches,..vision disturbances that came and went ...then woke up one day and couldn't walk.. complete loss of balance and fine motor co-ordination, was rushed to hospital... but got back about partial mobility...(though was originally misdiagnosed as 'possible MS')

In 2019 my left leg swelled up to double its size due to a blood clot..I got blood thinners...it took a while to go down but did eventually return to normal size. I didn't have any other symptoms that time except for the severe pain from the leg and crippling fatigue for about a month I was bedbound.

After this last one my balance went temporarily worse again and had a couple of falls but with daily physio that has improved again and gaming has got my visual-spatial skills and fine motor skills working again. My ability to plan again is improving when the fatigue and brain fog isnt too bad) and focus and co-ordination is improving again from video games. This time the Tinnitus has been constant which is exhausting (for my brain and making the fatigue levels more severe).

I really struggled to control my temper at first, everything was too overwhelming and too confusing .. and mood swings were severe but peri-menopause could also be impacting that.... with an estrogen cream and treating blood pressure those issues have calmed down. ..and frustration decreased as some of the other issues have improved.

From experience I would say Frustration will be your husbands biggest issue right now, his whole world has turned upside down and he can't talk to anyone about it... focus on finding a way to communicate with him. Look into ipad/android apps ..for people with aphasia to help them express emotions and sentences.. ..can program a virtual button to say a whole sentence or he can construct a sentence using symbols ..eg press a pic of an apple may open the food category where he can choose what he wants.... ..a smiley face icon may open a page where i can say 'I feel'..and choose ... his stroke specialist should know about these apps etc to help him express himself more easily until his speech recovers.

Hope that helps a little

 

[Rufous McKinney]

Hope that helps a little

thank you for sharing that, @Inca

How difficult. Gosh, so much going on, and so young. You've managed to overcome alot of challenges, You should feel really proud of yourself.

From experience I would say Frustration will be your husbands biggest issue right now

Some of that is occurring.

My husband's Speech therapist says he has a remarkable mental attitude and she has seen the whole gamut.

It's been difficult for me, with the ME, to concentrate when I am wiht him, in order to make more sense out of the communications.

his stroke specialist should know about these apps etc to help him express himself more easily until his speech recovers.

well, basically all THAT didn't work out. We have no stroke specialists, he did not get adequate PT and there has been no Speech Therapist for months now. We fought to get these things to happen and they just didn't.

We tried...

 

[Mouse girl]

"simple schizophrenia" is a completely outdated, historical term that is not used today. You are describing depression symptoms which are not cfs/me symptoms. Schozophrenia is a serious disease that is characterized by hallucinations.

 

[Inca]

well, basically all THAT didn't work out. We have no stroke specialists, he did not get adequate PT and there has been no Speech Therapist for months now. We fought to get these things to happen and they just didn't.

We tried...

If you have an iPad or could get him one (some of the apps may work on android I'm not sure) there are some made particularly for stroke survivors. This site mentions some

https://www.homecareassistancehunts...cing-stroke-survivors-ability-to-communicate/

Flint Rehab also has free e-book with stroke advice and you can get equipment off them that helps stroke recovery. (I think they are in the US)

https://www.flintrehab.com/?utm_sou...f-gpTNUmVlF9S5ZpYhID8JxkFq6OzGIRoCiqUQAvD_BwE

Can you get him home care given your conditions too so you can be together and it would take travel out of the equation for you and maybe less exhausting to play a few games together for short periods?

I was refused extensive physio because I was already a wheelchair user and already known to have speech difficulties and had an AAC device funded in the past, so I didn't get speech therapy either. As mine happened in pandemic it was considered I'd be safer at home where contact with others that could pass on covid was mimimal and I get community nurse visits thats it! ...so there is discrimination here too....how old is your husband? ...they may not offer it over a certain age but I don't know the US Insurance system?

Fortunately for me being a gamer before I already had the Wii with Wii Fit from last time (still working) and focuses on balance and co-ordination exercises and re-playing 3D games such as Zelda with big open worlds helped me re-remember spatial stuff..maps, direction etc and I was still slipping out on the scooter with my dog at 5am when no-one was about ..took photo'sof the road from my house to field, go down road ...take photo of road back to my house..go abit further ...take photo's along way...got him to field and back by myself using photo's from phone to match route back home... would look atarea maps.... draw line (with finger) of route take screenshot then follow route ...after a while with gaming daily too I could remember routes and get to places where it would trigger memories of taking my last dog too.

Did my own research too when I wasn't too tired ..which will be harder ..maybe impossible for him if he is in hospital and struggling with Aphasia. Do you have tech savvy kids who could maybe help you by researching apps to help him and help get him an iPad or Android tablet?

 

[Rufous McKinney]

If you have an iPad or could get him one (some of the apps may work on android I'm not sure) there are some made particularly for stroke survivors.

Thank you for this info. I saved it!

 

[JasonPerth]

Unfortunately MECFS has simular symptoms to 100s of other diseases including mental ones. Which leaves us in a pickle when we have no true biomarker. I doubt my MECFS is mental considering it was 100% post viral. I had Pneumonia like virus and never was the same. Dont see how that can be mental. Months after it the body naturally has a shock because its not getting better - like someone being told they have cancer- naturally its not gonna be great mentally and that brings its own issues. But MECFS likely has nothing to do with it.

For me anyway. Post viral.

Whenever someone tells me there MECFS is not related to a virus- burnout or stress, im abit more skeptical about that.
Chronic Fatigue vs Chronic Fatigue/Post Viral Syndrome

 

[Vladimir]

CFS/ME is definitely not a mental illness.

However, mental component is very important in my opinion. We are all extremely sensitive to all kinds of stress - physical activity excessing some limit, specific kinds of food, loud sounds, bright lights etc. Negative emotions, worries etc., regardless of the reason, cause stress too and this stress loads our nervous system in a similar to e.g physical activity manner.

Usually, CFS/ME manifests in full after some noticeable trigger like viral infection or extremely stressful life-situation. I think, the extreme load on our nervous systems caused by these triggers knocks our brain-chemistry homeostasis out of its normal functioning. And this significantly reduces the maximum level of nervous system load that our body/brain can accept without crashing...

I believe, CFS/ME is a stress-induced nervous system homeostasis imbalance which mainly focused around dopamine imbalance as well as serotonin and other stuff that regulates our neural activity.

It can be purely genetic. We can be that cohort of people with a gene that prevents our body to rebalance its homeostasis back to normal after our body experienced some extreme stress over its critical threshold...

 

[Inca]

We are all extremely sensitive to all kinds of stress - physical activity excessing some limit, specific kinds of food, loud sounds, bright lights etc.

This is true of people with Autism, Sensory Processing Disorder, Thyroid and Immune condition disorders and other neurological issues I find too. A lot also tire very quickly particuarly in social situations. There must be a link there somewhere between the kinds of triggers for ME/CFS developing.

Why are so many people in this day and age acquiring these kinds of conditions? When I was young you barely heard of people having stuff like MS, ME they were considered very rare conditions...Autism also was extremely rare especially in girls when I was a child...now suddenly there's loads of women 40+ yrs old who are 'on the spectrum'..ADHD is another condition that has suddenly blown up recently after only been associated with extremely hyperactive boys! ..and the new fad to 'self-diagnose' and it been accepted as legitimate! Some people I feel are claiming to have stuff because it seems to be the latest TikTok craze and trendy! ..and if you don't accept their self-diagnosis' you're discriminating against them!

Whilst its no fun when you genuinely have symptoms and specialists can't find a cause, it's still important that diagnosis from a specialist is acceptable way to prove it. Otherwise anyone can claim anything and it gets ridiculous! ...(There was a story over here where a school child identified as a cat!)

 

[JasonPerth]

Be careful
Dysautonomia and MECFS have many symptoms, physical and Cognitive.
It’s important to not focus on one symptom unless its the only symptom.
It might be worth doing a test to see if there is an issue to rule things out. However, if you have POTS, MCAS, Fatigue post viral, Brain fog, weakness, sudden muscle mass weight loss. I doubt its anything else

 

[pattismith]

all the articles by this US research team is amazing and important.
This article was released in 2018 but we need to read everything they relased after that!

Parkinson is the model of dopamine striatal dysfunction, but psychiatric illnesses and schizophrenia are also included in this article's part.

In fact, in Parkinson’s disease, dopamine cell degeneration tends to occur initially and predominantly in the lateral part of the SNpc, which projects mainly to the caudal-dorsal striatum.

Thus, there is a predominant deficit of the more “automatic” vs. “volitional” action skills and most sequential psychomotor responses need to be performed with full attention (Kim and Hikosaka, 2015).

Nevertheless, with more advanced stages of Parkinson’s disease the function of the more rostral striatum becomes also compromised, with deficits in “volitional” actions skills (Kim and Hikosaka, 2015).

With further (or preferential) ventral degeneration of the dopamine mesencephalic nuclei (VTA) we move to the pathology of the ventral striatum, to apathy (Tremblay et al., 2015), as it has also been demonstrated experimentally in the non-human primate

..

Essential Control of the Function of the Striatopallidal Neuron by Pre-coupled Complexes of Adenosine A2A-Dopamine D2 Receptor Heterotetramers and Adenylyl Cyclase​

2018​

Sergi Ferre

 

[pattismith]

@Hip

Just took some low dose levetiracetam this afternoon and felt immediately better, so I was curious about what research says on this antiepileptic drug.

In fact I found many interesting articles, and this one is about schizophrenia

Materials and Methods

In this randomized, controlled, three-blind randomized clinical trial approved by Mashhad University of Medical Sciences, Iran (IRCT20101130005280N31), forty chronic schizophrenic patients aged 18–60 years were randomly divided into two groups of levetiracetam and placebo.

The levetiracetam group received levetiracetam for 8 weeks. The symptoms were evaluated by Positive and Negative Symptoms Scale (PANSS), Stroop test, Digit Span test and Wisconsin Test at baseline, 4th week, and 8th week. Data were analyzed through SPSS V. 23 software, descriptive tests and inferential statistics.

Conclusion

The results showed that levetiracetam has significant effects on clinical symptoms, especially negative symptoms. Also, it impacts significantly on cognitive functions. It is recommended that it be added to the pharmacological regimen of these patients to improve their clinical symptoms, quality of life and treatment outcomes.
https://www.ingentaconnect.com/content/wk/incps/2022/00000037/00000004/art00005

2022

 

[JasonPerth]

@Hip

Just took some low dose levetiracetam this afternoon and felt immediately better, so I was curious about what research says on this antiepileptic drug.

In fact I found many interesting articles, and this one is about schizophrenia






2022

Do you have MECFS?
What is” immediately better”
Are you now walking and running all of a sudden a week on?