ME/CFS and emotional blunting, apathy, anhedonia, depersonalization, derealization

[lenora]

Hi @Pyrrhus.....I don't know if my condition could be described as emotional apathy or blunting (which is agreed upon above).

I do know that as we age we're exposed to many, many difficult times. In order to take command and be useful we have to dampen our otherwise normal responses. That has been my experience and many others in the same age group. This has been going on for probably 30 yrs. I just can't/don't cry but experience deep sadness in many areas. Especially those areas to do with my family. Crying isn't the only sign of sadness, it's just one.

Medication has helped me, I wouldn't change it for the world and yes, it took time to adjust to the dosage, etc. Instead of tears, I guess I manifest upset in the form of anxiety...believe me, I'd rather cry.

So is some of this normal as we age (mid 70's) or not? We're all different ages and personalities so I would expect that the results are all over the place. No, we often don't have words in our vocabulary to accurately describe how we're feeling. A great shame. Yours, Lenora.

 

[Oliver3]

Hi @Pyrrhus.....I don't know if my condition could be described as emotional apathy or blunting (which is agreed upon above).

I do know that as we age we're exposed to many, many difficult times. In order to take command and be useful we have to dampen our otherwise normal responses. That has been my experience and many others in the same age group. This has been going on for probably 30 yrs. I just can't/don't cry but experience deep sadness in many areas. Especially those areas to do with my family. Crying isn't the only sign of sadness, it's just one.

Medication has helped me, I wouldn't change it for the world and yes, it took time to adjust to the dosage, etc. Instead of tears, I guess I manifest upset in the form of anxiety...believe me, I'd rather cry.

So is some of this normal as we age (mid 70's) or not? We're all different ages and personalities so I would expect that the results are all over the place. No, we often don't have words in our vocabulary to accurately describe how we're feeling. A great shame. Yours, Lenora.

I wonder if too much energy is required for crying, or if the energy pathways needed to feel fully are just too much for us, or further still, we are somehow blocking our own metabolic and emotional pathways

 

[lenora]

Hi @Oliver3.....having experience this and also non-stop crying years before, I don't have the smallest idea in the world as to the cause of any of it. I wish I did.

Somehow in our society it seems you show sorrow by being tearful. Whether that's right or wrong, male or female I wouldn't even hazard a guess. I just feel that I'm often swallowing lumps of sadness, yet can't express it any other way. Personally, unless depression is involved, I think it's an age thing. Another one! Yours, Lenora

 

[Oliver3]

Hi @Oliver3.....having experience this and also non-stop crying years before, I don't have the smallest idea in the world as to the cause of any of it. I wish I did.

Somehow in our society it seems you show sorrow by being tearful. Whether that's right or wrong, male or female I wouldn't even hazard a guess. I just feel that I'm often swallowing lumps of sadness, yet can't express it any other way. Personally, unless depression is involved, I think it's an age thing. Another one! Yours, Lenora

Swallowing lumps of sadness indeed.
Years ago..I had gestalt therapy. After six months, she got through to me. I think it's about safety, for me at least. I've never really felt safe emotionally. She gave me that space.
My unbelievable anxiety went...and if it came ba, I thought of her.
Stupidly I took this opportunity to push my body working as a teacher doing insane hours...and bam..got extremely sick.
I do think this is all part of a phenotype. I don't think sadness is the root of everything tho, ala Gabor mate, it's how our genetics interface with our environment.
Removing that big psychological stressor for a while felt amazing. Emotional freedom..but the sadness was endless, I couldn't live like that

 

[Oliver3]

Hi @Oliver3.....having experience this and also non-stop crying years before, I don't have the smallest idea in the world as to the cause of any of it. I wish I did.

Somehow in our society it seems you show sorrow by being tearful. Whether that's right or wrong, male or female I wouldn't even hazard a guess. I just feel that I'm often swallowing lumps of sadness, yet can't express it any other way. Personally, unless depression is involved, I think it's an age thing. Another one! Yours, Lenora

It was neccesarily crying, although for men , were generally taught not to cry, but it was accessing those deep awful emotions...a by product was the crying..but I was literally holding in all that stuff for thirty years and it really ramped up my anxiety.
But , say like autistic people, it's not hard to ramp up that anxiety, the trigger is not the reason, the sensitivity we were born with, both physichally and emotionally is

 

[lenora]

If one can cry they should....just sit and have a good cry. From a physical point of view it's supposed to be good for the body even if you do end up with a stuffy nose.

I think it's wrong to teach children, especially males, that it isn't OK to have feelings and that they can't be displayed. All the ends up doing is having them stuff their feelings down until some (certainly not all) explode in some way. I cried until the sadness was so overwhelming and there was so much of it that crying was of no use. Why? I don't know, but do know older women in the same position.

Anxiety seems to be fairly common in our community and is an awful thing to live with. Yours, Lenora.

 

[lenora]

I also wanted to add that if you need a counselor, look for one who deals with chronic illness....there are just so many things common to us that are understood by that type of person. Many are trained overall, that's not bad, but it does help if you're not eternally explaining things. Save yourselves some money!

I've had three bouts of severe anxiety. Now I'm down to it being controlled by meds only. Sure, I didn't end up that way, but it has literally been a life saver. A visit to a psychiatrist working with your neurologist will ensure that this can occur. To save worry....it's one visit and perhaps one if your neurologist/rheumatologist doesn't feel right in prescribing the meds without his OK. I only ever had to make one visit and that was years ago. I see a counselor if I feel the need. If you get the right one, they're invaluable. So look for one dealing with chronic illness of any sort.

I don't know anything about Gestalt Therapy, but many have used it with good results. I even went to a group called Recovery or Recovery, Inc. where you just read out of a book and learned to simply let your feelings sweep over you. That was fine, until anxiety became panic attacks and couldn't be controlled except with meds. It can get worse with the passage of time. Yours Lenora.

 

[Insomniac]

. .....It’s a bit terrible, but I think I weigh it against the gravity of what I’m going through, so a lot of things no longer register as terrible, if you get what I mean....

That might be the case for me and for many of us, more than any biochemical cause of this illness. That and being exhausted

 

[Oliver3]

I also wanted to add that if you need a counselor, look for one who deals with chronic illness....there are just so many things common to us that are understood by that type of person. Many are trained overall, that's not bad, but it does help if you're not eternally explaining things. Save yourselves some money!

I've had three bouts of severe anxiety. Now I'm down to it being controlled by meds only. Sure, I didn't end up that way, but it has literally been a life saver. A visit to a psychiatrist working with your neurologist will ensure that this can occur. To save worry....it's one visit and perhaps one if your neurologist/rheumatologist doesn't feel right in prescribing the meds without his OK. I only ever had to make one visit and that was years ago. I see a counselor if I feel the need. If you get the right one, they're invaluable. So look for one dealing with chronic illness of any sort.

I don't know anything about Gestalt Therapy, but many have used it with good results. I even went to a group called Recovery or Recovery, Inc. where you just read out of a book and learned to simply let your feelings sweep over you. That was fine, until anxiety became panic attacks and couldn't be controlled except with meds. It can get worse with the passage of time. Yours Lenora.

Yes but don't discount success either Lenora. I know what my specific triggering issue is. It just takes me so much emotional energy to face it.
I'm considering psyxhedlics down the line.
I understand too that for some people this anxiety is just smthg physichal.
For me, it's a feeling of deep feelings of lack of safety preverbally. Gestalt was helpful as it's minute by minute relational contact with another human and they become your mirror in a way that's really personal. For me that's the only therapy that works. It forces you to deal with the pain in your mind and body.
It was quite a surprise to me that repression could lead to such high levels of anxiety

 

[Oliver3]

If one can cry they should....just sit and have a good cry. From a physical point of view it's supposed to be good for the body even if you do end up with a stuffy nose.

I think it's wrong to teach children, especially males, that it isn't OK to have feelings and that they can't be displayed. All the ends up doing is having them stuff their feelings down until some (certainly not all) explode in some way. I cried until the sadness was so overwhelming and there was so much of it that crying was of no use. Why? I don't know, but do know older women in the same position.

Anxiety seems to be fairly common in our community and is an awful thing to live with. Yours, Lenora.

I think, in my case, I'm phobic to feeling, it's part of the spectrum no doubt. We are all sensitifs aren't we and experience life through that prism

 

[lenora]

@Oliver3.....I didn't mean to discount your therapy. Hey, it works for you; I'm glad you found something that does.

Perhaps you'll need to see your therapist from time to time, otherwise it sounds like you can handle it yourself. Don't be put off by what I said, I believe in using whatever it is that works.

Yes, I do believe that most human beings have different degrees of being sensitive. It's just that it can't be held up as an excuse when dealing with society at large. Our feelings can be hurt, but hopefully we'll let it go within a day or so. If someone is truly mean and hurtful, then hopefully we can identify that feeling and keep a tremendous distance between each other. No one has that right, either. Yours, Lenora.

 

[Oliver3]

@Oliver3.....I didn't mean to discount your therapy. Hey, it works for you; I'm glad you found something that does.

Perhaps you'll need to see your therapist from time to time, otherwise it sounds like you can handle it yourself. Don't be put off by what I said, I believe in using whatever it is that works.

Yes, I do believe that most human beings have different degrees of being sensitive. It's just that it can't be held up as an excuse when dealing with society at large. Our feelings can be hurt, but hopefully we'll let it go within a day or so. If someone is truly mean and hurtful, then hopefully we can identify that feeling and keep a tremendous distance between each other. No one has that right, either. Yours, Lenora.

Hey Lenora .thanks for the nice message. Yes I think each and everyone of us has things that work for us that just don't for the other.
Yes, I was just stating as a fact that we are sensitifs. Not judging. I mean it's a gift as well as a curse. I'm not sure about the society at large bit. I think society is extremely triggering for people like us don't you? I think even " normies" are feeling it very badly. We weren't designed to live like this in our very DNA.
I just hope there's some effective treatment like yesterday.
I think we're a pretty badly abused minority. One just becomes so used to it that you kinda think it's normal, but you know it's not deep down.

 

[lenora]

Hi Oliver3......I think we WERE a badly abused minority but that's changing more and more each day. Yes, there will always be people who don't believe our illness, but people generally are listening more and more, want to find out about the illness & while they probably aren't donating, are open to hearing more about it.

Just yesterday I was reading a report wherein 90% of people recovering from Ebola have the same symptoms (or at least most) as we do. Now that doesn't even take into account COVID, so we know that something is happening.....there is a post-viral syndrome of some sort or another.

Research is better than ever and we absolutely have to remain hopeful (that's our job) and spread the word in clear, very concise statements. Nothing too long, but short so that people will read it. I would guess that some organization dealing in this is already doing so. We should look for it and send these brochures or whatever to all the people will know. We can't force them to read the info, but we can try.

If we didn't have the name Chronic Fatigue Syndrome or even ME, I do believe something like Post-Viral Infection would have worked. It may still as it would cover all infections. We'll get more research and good research....countries are sharing it, they always have as I recollect, but there just wasn't enough to matter. AIDS had taken over and b/c of the similarities (immune system deficiencies), the govt. certainly didn't want to deal with us in any form.

AIDS had the benefit of healthy volunteers and even people with the disease who could still get out and about....but they had a hard time of it, many lives were lost and it was just a sad time. Personally I thought I had AIDS as I'd also had brain surgery & a transfusion at that time. We adjust because we have to. Yours, Lenora.

 

[Oliver3]

Hi Oliver3......I think we WERE a badly abused minority but that's changing more and more each day. Yes, there will always be people who don't believe our illness, but people generally are listening more and more, want to find out about the illness & while they probably aren't donating, are open to hearing more about it.

Just yesterday I was reading a report wherein 90% of people recovering from Ebola have the same symptoms (or at least most) as we do. Now that doesn't even take into account COVID, so we know that something is happening.....there is a post-viral syndrome of some sort or another.

Research is better than ever and we absolutely have to remain hopeful (that's our job) and spread the word in clear, very concise statements. Nothing too long, but short so that people will read it. I would guess that some organization dealing in this is already doing so. We should look for it and send these brochures or whatever to all the people will know. We can't force them to read the info, but we can try.

If we didn't have the name Chronic Fatigue Syndrome or even ME, I do believe something like Post-Viral Infection would have worked. It may still as it would cover all infections. We'll get more research and good research....countries are sharing it, they always have as I recollect, but there just wasn't enough to matter. AIDS had taken over and b/c of the similarities (immune system deficiencies), the govt. certainly didn't want to deal with us in any form.

AIDS had the benefit of healthy volunteers and even people with the disease who could still get out and about....but they had a hard time of it, many lives were lost and it was just a sad time. Personally I thought I had AIDS as I'd also had brain surgery & a transfusion at that time. We adjust because we have to. Yours, Lenora.

Its not even close to change here in the UK. My doc told me the other day I need to go back to psychotherapy and take it more seriously this time!!!! I've written to MPs throughout the pandemic asking for funding, telling them that there would be a new outbreak of m.e. pointed them in the direction of omf. Another 18 months missed chance.
The medical system is completely beholden to money, power and old paradigms. The ling covid sufferers are being given graded exercise therapy. Still a looonnng way to go
Like you say, you thought you had AIDS. It's that serious. But you wouldn't know it from the way were treated.
I'm not accepting societal blame anymore. I make sure everyone I know knows it as I'm sick of having to lie , or mask to be believed.
I much less ashamed of being this ill now. That's an external pressure that's just not acceptable.
I know we most probably agree, I'm just stating my point clearly

 

[lenora]

I think things are more difficult in the UK than they are in the USA. I don't really know why, except that perhaps your medical establishment really bought into the psychiatric presentation give to them.

I'm not saying it's easy here, because it isn't....but there are doctors who have some empathy for suffering patients and don't force us into things that are harmful. My first PT round was fascial but enough wasn't known about the problem....things have improved, at least for me, over the years. I'm never rude, but do stand my ground b/c in many cases I know more about the problem than a lot of doctors. However I have to say that more are trying harder, and the blank stare when you mentioned the illness isn't there any longer. Computers changed that attitude tremendously. I do believe that a lot of people have problems, especially those in areas where medical help is less available....but you can always find someone in a city. Better luck. Yours, Lenora.

 

[Oliver3]

I think things are more difficult in the UK than they are in the USA. I don't really know why, except that perhaps your medical establishment really bought into the psychiatric presentation give to them.

I'm not saying it's easy here, because it isn't....but there are doctors who have some empathy for suffering patients and don't force us into things that are harmful. My first PT round was fascial but enough wasn't known about the problem....things have improved, at least for me, over the years. I'm never rude, but do stand my ground b/c in many cases I know more about the problem than a lot of doctors. However I have to say that more are trying harder, and the blank stare when you mentioned the illness isn't there any longer. Computers changed that attitude tremendously. I do believe that a lot of people have problems, especially those in areas where medical help is less available....but you can always find someone in a city. Better luck. Yours, Lenora.

Thats good to hear
Wish it was like that here. There's something very peculiar about British medicine. I think as it's one of the real centres traditionally of s certain type of medicine, top down, compartmentalised, were still living in the shadow of that tradition.
All I ever get is ignorance no matter what doc i see. There is very very little training.
I know so much more than my doctor's it's my embarrassing and they respond with passive aggression, schadenfreude and somatisation.
Long way to go here

 

[christiankatz]

I'm able to cry, but I don't. Even if I scarcely cry a tear or two, it will completely drain me of everything for the rest of the day, so I refuse. There are a lot of things I can't feel, but I can feel joy, so I'm happy with that.

 

[lenora]

Sorry to hear that @christiankatz. There are days when we're sad no matter what....I really missed everyone in my family over the weekend. The only trigger that I can think of is that there were a lot of birthdays and deaths.

Still, I slept well last night and awakened in a much better mood. We do have ups and downs....the human drama starting to play out. I hope you feel better today. Yours, Lenora.

 

[SWAlexander]

For me there is rarely anger, only when I´m in real deep physical pain (sepsis), my blood pressure is around 196 and a doctor try to convince me that I should meditate, pray or take classes in mindfulness.

If not in pain, I feel all kinds of emotions again since 2000, the time I ended all SSRI´s.

 

[Wishful]

I find it hard to tell what my emotional response is. I can feel emotion, such as from a particularly sad scene in a book. The problem is that ME makes me limit what I do/encounter, so I'm not encountering much in the way of strong emotional stimulus. I can't remember the last time I felt really happy.