Complete anhedonia (loss of feelings) as a ME symptom. Anyone else who has it?

[redo]

One of my ME symptoms is a practically complete loss of feelings. I don't feel full, hungry, happy, sad, touch, heat and more. So it goes beyond the just not feeling positive things, also the negative things aren't there. With practically not feeling, I mean that it's like there's a drop of water where there used to be a full bucket.

If I try to get artificial stimuli (such as medications known to release dopamin, serotonin, endorphins), that does nothing as well. So, I have concluded that my problems are most likely on a receptor level, instead of a lack of neurotransmitters.

Do you have this as well? Or something similar to this? Of the hundreds of patients I've been in touch with, I know of only two other whom have it.

 

[SOC]

One of my ME symptoms is a practically complete loss of feelings. I don't feel full, hungry, happy, sad, touch, heat and more. So it goes beyond the just not feeling positive things, also the negative things aren't there. With practically not feeling, I mean that it's like there's a drop of water where there used to be a full bucket.

If I try to get artificial stimuli (such as medications known to release dopamin, serotonin, endorphins), that does nothing as well. So, I have concluded that my problems are most likely on a receptor level, instead of a lack of neurotransmitters.

Do you have this as well? Or something similar to this? Of the hundreds of patients I've been in touch with, I know of only two other whom have it.

I don't know if it is the same thing at all, but when I get overtired -- especially mentally overtired -- my emotions get blunted. For me, though, it's a temporary thing -- hours or days -- if I recognize it and get some mental rest.

You've tried the range of antidepressants, ssri's, snri's, or even tricyclics?

 

[JoC]

Well, I'm almost in the same situation as you and I thought I was depressive. My emotions are flat, as you I'm not happy, I'm not sad...in a way I don't care. I was a very emotional guy before, but all has gone...is it due to CFS? Who knows...?

 

[redo]

I don't know if it is the same thing at all, but when I get overtired -- especially mentally overtired -- my emotions get blunted. For me, though, it's a temporary thing -- hours or days -- if I recognize it and get some mental rest.

Interesting! It sounds like it's much of the same, but that you're - most of the time - below a threshold, and the symptom isn't a problem. That's what it seems like to me...

You've tried the range of antidepressants, ssri's, snri's, or even tricyclics?

Nope. If you know or can think of one plausible to work, than please do post.

Well, I'm almost in the same situation as you and I thought I was depressive. My emotions are flat, as you I'm not happy, I'm not sad...in a way I don't care. I was a very emotional guy before, but all has gone...is it due to CFS? Who knows...?

To me, it is a central part of my disease. With you, do you feel 'uncomforable' going to a cafe, school or other places where you have to deal with a lot of new people? I do, and it goes beyond the brain fog. And it seems very connected with the anhedonia.

 

[SOC]

Interesting! It sounds like it's much of the same, but that you're - most of the time - below a threshold, and the symptom isn't a problem. That's what it seems like to me...

Nope. If you know or can think of one plausible to work, than please do post.

To me, it is a central part of my disease. With you, do you feel 'uncomforable' going to a cafe, school or other places where you have to deal with a lot of new people? I do, and it goes beyond the brain fog. And it seems very connected with the anhedonia.

It sure sounds like mental fatigue to me, but I'm no medical expert. I used to be good at resting my body, but not my mind. Now I've learned that the brain uses more energy than the body, I'm better at resting my brain, too. For me, that means no tv during the day, limited internet, audiobooks instead of reading. Lots of supine rest with eyes closed helps. Once it's cleared, I can keep it at bay by paying more attention to stopping mental activity as soon as I feel "stunned" or "zombified" or anhedonic.

That uncomfortable feeling in places with lots of people was definitely mental fatigue for me. I do better now if I mentally rest ahead when I have to be surrounded by lots of people.

If you're thinking of trying an AD, I'd consider one with added benefits to PWME such as trazodone (an SARI) which can help maintain sleep, or cymbalta (an SNRI) which can help with pain, if you have either of those symptoms. I've heard a lot of good things about Wellbutrin (an NDRI) which is more stimulating than sedating, iirc. Remember, though, that different people react to ADs differently, so be careful. The old PWME meds adage applies here big time: "Start low, go slow."

 

[markmc20001]

Know exactly what you mean. A pet died once and I wasn't very sad even though I thought I should be crying. Haven't cried in years.

Have difficulty with empathy, and feeling happy. All kinds of feelings are lacking. I just feel numb basically. Numb to reality. Brain is often numb many days, especially when I get that swelling feeling in my head.

Just really bizarre. It varies depending on how healthy I'm feeling. I have spent most of my life in complete denial about how sick I am, and how serious things are. Still trying to show up for work even though NOTHING gets done. That is the most bizzare thing ever. Just being able to move, but not get anything done.

However, I can now rationally understand how much of a pickle I'm in when reflecting on my situation. How short and precious life is.

Maybe it is some sort of protection mechanism. I can't see how one could really live fully feeling and understanding what the heck we are in for. For me it is just one day at a at time and I'm just along for the ride.

 

[redo]

It sure sounds like mental fatigue to me, but I'm no medical expert. I used to be good at resting my body, but not my mind. Now I've learned that the brain uses more energy than the body, I'm better at resting my brain, too. For me, that means no tv during the day, limited internet, audiobooks instead of reading. Lots of supine rest with eyes closed helps. Once it's cleared, I can keep it at bay by paying more attention to stopping mental activity as soon as I feel "stunned" or "zombified" or anhedonic.

That uncomfortable feeling in places with lots of people was definitely mental fatigue for me. I do better now if I mentally rest ahead when I have to be surrounded by lots of people.

If you're thinking of trying an AD, I'd consider one with added benefits to PWME such as trazodone (an SARI) which can help maintain sleep, or cymbalta (an SNRI) which can help with pain, if you have either of those symptoms. I've heard a lot of good things about Wellbutrin (an NDRI) which is more stimulating than sedating, iirc. Remember, though, that different people react to ADs differently, so be careful. The old PWME meds adage applies here big time: "Start low, go slow."

The problem is, I never get below a threshold where I am able to feel. Haven't been for almost a decade. If I rest, other symptoms 'improve', but not the zombie symptom. If it wasn't so strong, I am sure that would improve as well when I rest. It's entwined with the rest of the symptoms, only stronger.

Brain fog makes it unconformable to be in new situations (absolutely), but, it's also part of the zombie symptom for me that makes it 'uncomfortable'.

Thanks for the tips. If I'll try something I'll try Wellbutrin (used among other things stopping smoking), or perhaps trazodone, since I have heavy insomnia. I think the problem is really on the receptor level, but long shots should also be taken... Trying AD would however be trying to dampen a symptom, instead of going to the root cause.

Know exactly what you mean. A pet died once and I wasn't very sad even though I thought I should be crying. Haven't cried in years.

Have difficulty with empathy, and feeling happy. All kinds of feelings are lacking. I just feel numb basically. Numb to reality. Brain is often numb many days, especially when I get that swelling feeling in my head.

Just really bizarre. It varies depending on how healthy I'm feeling. I have spent most of my life in complete denial about how sick I am, and how serious things are. Still trying to show up for work even though NOTHING gets done. That is the most bizzare thing ever. Just being able to move, but not get anything done.

However, I can now rationally understand how much of a pickle I'm in when reflecting on my situation. How short and precious life is.

Maybe it is some sort of protection mechanism. I can't see how one could really live fully feeling and understanding what the heck we are in for. For me it is just one day at a at time and I'm just along for the ride.

Me too. We also had a dog which died, been with us for many years, but I am numb so I don't feel anything. When other ME symptoms are worse, the zombie symptoms goes even more zombie.

I agree with you about life being short and this not being a life. I am trying anything to get well.

After you eat a big good meal, are you able to feel full? That good laid back feeling which healthy people get after eating. I'm not.

 

[Bob]

Yes, I have a sort of barrier between myself and the world these days because of the cognitive issues and brain fog.
All of my emotions, thoughts and many experiences are dull/flat because of the permanent brain fog.
I don't think we should underestimate the consequences of having permanent cognitive impairment.

But, because we spend so much time isolated and without normal physical, emotional and social stimulation, it's quite likely that many of us might experience some form of mild or major depression during the course of our illness. Depression can last for years on end, and it can take the form of a very slow and gradual onset. Mild depression can be impossible to detect especially if it comes on gradually, because it can just feel like our character is one that is naturally low in positive emotions and feelings. So it can be easy to mistake mild depression for personality or character.

With depression, you can lose your emotions, feelings, enjoyment, motivation and sense of self. Also your senses can seem dull. The meaning, motivation and purpose can disappear from life. For many people it can feel like there is an invisible barrier between themselves and the world.

There's a type of depression that you can get where you don't feel strong negative emotions, but you just lose the positive feelings/emotions from your life. So it's not so much a negative experience, but it's a lack of positivity. This type of depression is very distressing if it lasts for a long time, as it starts to colour our whole life experience. Life slowly loses it's meaning, as much of the complex richness of life is lost to a dull fog.

Redo, Mark and JoC, from what you have described above, it is difficult to determine if you have described a cognitive symptom of ME, or a form of depression, or possibly both.
But the lack of positive emotions described above, suggests to me that there could possibly be a touch of depression going on for you.
ME can dull the brain a lot, but it doesn't necessarily wipe out all positive emotions, although I think it can do.
So if you haven't tried anti-depressants, then I think your description of your feelings would qualify you for being prescribed some, and I think it might be worth trying them out just to see if they make a difference for you.
If you try antidepressants and they don't make a difference, then maybe you don't have depression, but at least you've given them a try and ruled out the possibility of depression. But please note - everyone responds differently to antidepressants - if they don't work for you at first then it is worth trying a different dose or a completely different type of antidepressant.

Not everyone likes anti-depressants but many people find them very helpful, and often a life-line. So please don't believe the negative hype surrounding them. I think that people have to decide for themselves whether they are helpful or not.
In my experience, absolutely no herbal remedies (except some types of St John's Wort), or vitamins, or other types of supplements work like anti-depressants, although some supplements may have a very mild effect on mood for people without depression.
And I wouldn't recommend St Johns Wort, because it is not reliable, not all brands are effective, you have to take a specific amount of the active ingredient, and it has dangerous side effects and drug interactions.
Anti-depressants are a lot safer and more reliable.

Also be sure to get your thyroid levels checked, because a low thyroid causes low mood.

Personally, I would not suggest Wellbutrin as an anti-depressant of first choice. It is very stimulating, and works primarily on noradrenaline, which is a neurotransmitter which acts more on stimulation than on mood (although this might suit some people). This artificial brain stimulation might not be suitable for people with ME because we are so sensitive to exertion and stress. I think Wellbutrin also might have more side effects than some others. If you think you need a stimulating antidepressant then one of the SSRI's might be helpful. If you need help sleeping, resting or calming down, then one of the tricyclics might be helpful.

I don't know if I've answered any of your questions... I'm just exploring the subject...
I've had many years personal experience of depression, in the past, and so i've got quite a lot of insight into it.

Please ask me any questions, if I can help further.

Take care,
Bob

 

[L'engle]

I have this to a certain extent, but not completely. For me it seems like a safety mechanism, since strong emotions are energy drainers and can leave me in physical pain. I still have some strong emotions, but do not cry easily these days. Since emotions can cause a physical breakdown, it's best I avoid them when possible. Easier said than done, I'm pretty achy today from worry about friends (not friends here though, but in the 'real world' )

It is strange, overall, and hard to describe this as a 'symptom', compared to some others.

 

[PokerPlayer]

I had this. I was taking b12 d3 folic acid fish oil. All these things helped my physical crash threshold, I could be very active with no reprocussions except just increased cognitive dysfunction. I decided I didn't like feeling completely emotionless, so I stopped all supplements. It took 10 months, but finally I have been able to feel something. Although, that something is not a good something. Now, I have constant medium to major depression, and no happiness.

So yeah, for me it is either blunted emotions or depression. I would say that with blunted emotions at least I was not suffering like I am now. I would rather be brain foggy than depressed.

 

[redo]

Redo, Mark and JoC, from what you have described above, it is difficult to determine if you have described a cognitive symptom of ME, or a form of depression, or possibly both. (...)

It's really different. Depressed people are able to feel sad, I am not (nor is JoC). They rarely have exiting plans for the future, I am full of them. They do feel some sort of stimuli (like every healthy person do) if they are given substances known to give a massive stimuli to the endorphin, dopamine or serotonin system. I don't.

What I am describing is distinctly different from depression. It's blunted on a totally different level, and on a totally different way. The normal ME patient doesn't have this symptom, but some do. I really haven't asked around before, so the other place I saw others having the same as me was a thread I stumbled across some years ago.

 

[PokerPlayer]

Yeah I would also disagree that blunted emotions is a sign of depression. More likely I would argue it is a sign that depression is under control, and that the underlying cause is still causing inflammatory reactions in the brain. A lot of people with successfully controlled bipolar depression have decreased cognitive capabilities as a side effect of the medications they are on. But, their depression is under control.

Blunted positive emotions but strong negative emotions is depression. Feelings of sadness/despair would probably need to be required to be depression.

 

[ahimsa]

One of my ME symptoms is a practically complete loss of feelings. I don't feel full, hungry, happy, sad, touch, heat and more. So it goes beyond the just not feeling positive things, also the negative things aren't there. With practically not feeling, I mean that it's like there's a drop of water where there used to be a full bucket.

If I try to get artificial stimuli (such as medications known to release dopamin, serotonin, endorphins), that does nothing as well. So, I have concluded that my problems are most likely on a receptor level, instead of a lack of neurotransmitters.

Redo, I'm so sorry to hear about this. It sounds pretty awful. I don't have this symptom at all so I can't help you out much.

I do wonder about the use of the term anhedonia, though. I thought anhedonia was inability to feel pleasure [from the Greek "a-" (without) "hedone" (pleasure, delight)], not the inability to feel anything. Isn't there another term for the inability to feel anything?

Have you seen a doctor (neurologist? some other specialty?) about this? Has the doctor been unable to diagnose or treat this problem? (sorry if you listed it somewhere on this thead and I missed it....)

It sounds pretty serious, not to mention miserable, that you can feel neither joy nor sorrow. I would think that a doctor would take this symptom seriously.

Sending you some HUGS

 

[Bob]

It's really different. Depressed people are able to feel sad, I am not (nor is JoC). They rarely have exiting plans for the future, I am full of them. They do feel some sort of stimuli (like every healthy person do) if they are given substances known to give a massive stimuli to the endorphin, dopamine or serotonin system. I don't.

What I am describing is distinctly different from depression. It's blunted on a totally different level, and on a totally different way. The normal ME patient doesn't have this symptom, but some do. I really haven't asked around before, so the other place I saw others having the same as me was a thread I stumbled across some years ago.

I had this. I was taking b12 d3 folic acid fish oil. All these things helped my physical crash threshold, I could be very active with no reprocussions except just increased cognitive dysfunction. I decided I didn't like feeling completely emotionless, so I stopped all supplements. It took 10 months, but finally I have been able to feel something. Although, that something is not a good something. Now, I have constant medium to major depression, and no happiness.

So yeah, for me it is either blunted emotions or depression. I would say that with blunted emotions at least I was not suffering like I am now. I would rather be brain foggy than depressed.

PokerPlayer makes a very interesting point that I think should be considered closely.

If anyone is taking fish or other oils, they can act as a potent mood modulator / mood stabiliser.
This applies to some other supplements as well. For example, in my experience, Magnesium and Vit D3 might have a similar affect on the mood.

I've taken supplements in the past that have flattened my mood, and severely dampened my emotions, leaving me pretty lifeless. Certain supplements really did have a very modulating effect on my mood and emotions. Not causing depression as such, but extremelly dampened emotions which was very unpleasant, and pretty close to depression.

I bounced back soon after stopping the offending supplements.
So it might be worth considering having a break from supplements sometimes to test these things out.
Best of luck.

 

[SOC]

Yeah I would also disagree that blunted emotions is a sign of depression. More likely I would argue it is a sign that depression is under control, and that the underlying cause is still causing inflammatory reactions in the brain. A lot of people with successfully controlled bipolar depression have decreased cognitive capabilities as a side effect of the medications they are on. But, their depression is under control.

Blunted positive emotions but strong negative emotions is depression. Feelings of sadness/despair would probably need to be required to be depression.

No, actually anhedonia is one of the most identifiable signs of depression. This is another one of those "stupid name" illnesses that leads to incorrect assumptions in perfectly reasonable people. When people hear "depression" they think patients are universally sad. Not true.

Many people with endogenous depression ("depression" caused by neurochemical imbalances) never suffer from inappropriate sadness. The illness is still called "depression". It's not caused by life circumstances or unhealthy thought processes. It's physiological, not psychological. (Sound familiar?) Fortunately, the meds work on the physiological cause of endogenous "depression".

Exogenous depression, on the other hand, can be treated with talk therapy because the root is in some sort of pathological thinking. That isn't to say that a person couldn't have both endogenous and exogenous depression, and need both talk therapy and meds.

It might be well worth your while to try ADs if you have anhedonia. Doubt it will do any good for the ME (contrary to the thinking of innumerable over-paid under-trained MDs), but it might help you feel better.

 

[ramakentesh]

long term use of medications that alter levels of serotonin and dopamine change the regulation and amount of receptors. Infact they may actually work in some conditions not by increasing long term amounts of the neurotransmitters , rather the receptors up regulate or down regulate and this may be the mechanism that elevates mood in depressive illness, etc.

 

[PokerPlayer]

No, actually anhedonia is one of the most identifiable signs of depression.

I can see what you are saying here. But when you put it that way, then it is required that we define autistics as depressed. If the cognitive dysfunction leading to anhedonia in ME is depression, than by that definition I would argue that all autistics are "depressed".

It just doesn't make sense, too many "types" of depression, and different biological origins to be solved.

 

[PokerPlayer]

In terms of treatment, fish oil helped a bit. Hydroxy b12 was a little energizing and brain fog clearing (but not good for me long term). samE, stimulants, I wish I knew..... I was exactly like you for a year and a half before I recently crashed and now I am clear as ever but really depressed and have no physical crash tolerance (but do have mental crash tolerance).

 

[Crappy]

One of my ME symptoms is a practically complete loss of feelings. I don't feel full, hungry, happy, sad, touch, heat and more. So it goes beyond the just not feeling positive things, also the negative things aren't there. With practically not feeling, I mean that it's like there's a drop of water where there used to be a full bucket.

If I try to get artificial stimuli (such as medications known to release dopamin, serotonin, endorphins), that does nothing as well. So, I have concluded that my problems are most likely on a receptor level, instead of a lack of neurotransmitters.

Do you have this as well? Or something similar to this? Of the hundreds of patients I've been in touch with, I know of only two other whom have it.

Wow, a lot more responses than I would have predicted; especially so fast.

I have it too. I have come across some theories that it is caused by the affected areas of the brain. I noticed emotions going away about 6 years into the illness. Felt really strange when it was new, now 12 years in, I think it was a blessing. With all the human shortcomings highlighted by this condition (divorce, incompetent and uncaring medical workers, uncaring politicians, etc...) I would have been in prison for multiple homicides. :Retro mad:

No one I know, knows the cause; but be happy you have it. I think having this illness without "emotional blunting" would drive you crazy.

 

[redo]

Thanks for the good wishes Bob.

I had this. I was taking b12 d3 folic acid fish oil. All these things helped my physical crash threshold, I could be very active with no reprocussions except just increased cognitive dysfunction. I decided I didn't like feeling completely emotionless, so I stopped all supplements. It took 10 months, but finally I have been able to feel something. Although, that something is not a good something. Now, I have constant medium to major depression, and no happiness.

So yeah, for me it is either blunted emotions or depression. I would say that with blunted emotions at least I was not suffering like I am now. I would rather be brain foggy than depressed.

In terms of treatment, fish oil helped a bit. Hydroxy b12 was a little energizing and brain fog clearing (but not good for me long term). samE, stimulants, I wish I knew..... I was exactly like you for a year and a half before I recently crashed and now I am clear as ever but really depressed and have no physical crash tolerance (but do have mental crash tolerance).

That's fascinating to hear. So, hydroxy b12, fish oil, samE and more made the not feeling symptom worse? It's very interesting, since one of the others I know of, whom also have had the not feeling symptom, got better with a somewhat similar methylation protocol. It's seems that agents affecting methylation pokes at these mechanisms.

Redo, I'm so sorry to hear about this. It sounds pretty awful. I don't have this symptom at all so I can't help you out much.

I do wonder about the use of the term anhedonia, though. I thought anhedonia was inability to feel pleasure [from the Greek "a-" (without) "hedone" (pleasure, delight)], not the inability to feel anything. Isn't there another term for the inability to feel anything? (...)

Hugs back. If you can think of a term for not feeling anything, than please let me know. It would be very valuable as a means of finding more info on this.

No, actually anhedonia is one of the most identifiable signs of depression. (...) Many people with endogenous depression ("depression" caused by neurochemical imbalances) never suffer from inappropriate sadness. The illness is still called "depression". It's not caused by life circumstances or unhealthy thought processes. It's physiological, not psychological. (Sound familiar?) Fortunately, the meds work on the physiological cause of endogenous "depression".

The reason I used the term anhedonia in the title was in lack of a better word. So, in the post, I elaborated, and wrote that it goes beyond not feeling positive things, but also stretches to not feeling negative things, not feeling touch, not feeling hungry, full, cold, warm. As, Pokerplayer says, it one is also unable to feel negative things.

I think you're right about your points about endogenous conditions, and how drugs used to treat them, might help alleviate the symptoms.

Wow, a lot more responses than I would have predicted; especially so fast.

I have it too. I have come across some theories that it is caused by the affected areas of the brain. I noticed emotions going away about 6 years into the illness. Felt really strange when it was new, now 12 years in, I think it was a blessing. With all the human shortcomings highlighted by this condition (divorce, incompetent and uncaring medical workers, uncaring politicians, etc...) I would have been in prison for multiple homicides. :Retro mad:

No one I know, knows the cause; but be happy you have it. I think having this illness without "emotional blunting" would drive you crazy.

Thanks for the reply C. Does your not feeling also stretches to not being able to feel hunger as you should, or feeling full as you should?