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

[Hip]

Anhedonia is common sub-symptom in schizophrenia, major depression, and also a lesser known type of depression called dysthymic disorder (which I only recently came across). I suspect my anhedonia might arise from dysthymic disorder.

Symptoms of Dysthymia
Sadness or depressed mood most of the day or almost every day
Irritability or excessive anger

Loss of enjoyment in things that were once pleasurable
Avoidance of social activities

Fatigue or loss of energy almost every day
Insomnia or excessive sleep almost every day
Physically restless or rundown that is noticeable by others

Problems with concentration or making decisions almost every day
Decreased activity, effectiveness and productivity

Feelings of hopelessness or worthlessness or excessive guilt almost every day
Recurring thoughts of death or suicide, suicide plan, or suicide attempt

Major change in weight (gain or loss of more than 5% of weight within a month) or appetite

Sources: here and here.​

People who have major depression are generally aware they have it; but people with dysthymic disorder often do not realize that they have this condition. Dysthymic disorder is considered less severe than major depression, and people with dysthymic disorder often think its symptom are just part of their personality, rather than a result of a condition they have. This means that people can easily miss the fact that they have dysthymic disorder.

You can in fact have both major depression and dysthymic disorder together: this is known as "double depression".

There is also some symptom overlap between ME/CFS and dysthymic disorder. And presumably, people could have both ME/CFS and dysthymic disorder together.


This article is of interest:
Tired, grumpy and cynical? You're not just an old grouch - you may be ill | Mail Online

 

[Aerose91]

I can't feel sad when I have depression, I don't feel anything - not pain, hunger, cold or heat. No happiness, no sadness, just an unending nothingness.

The nothingness. This is exactly how I describe it. However mine goes so, so far beyond nothingness and anhedonia and apathy. There are definately some neurotransmitters and other things wreacking havoc in my brain because I have the nothingness all the time- but if I exert at all I get all these crazy waves of discomfort.... emotionally. Nothing at all brings the feelings back but I do get those waves of extreme discomfort and a sense of just feeling awkward for no reason. Usually after I do too much. However I'm so dicossiaed and disconnected from reality My brain doesn't have any fear or problems with this. On top of everything wrong I'm so checked out my brain can't even feel that there's a problem, I just feel sort of, content. It's so odd and I hate it. There's a MAJOR problem, I want to FEEL it, know what it is, be able to work through it. But no, just the nothingness and emptiness. It's gotten so bad now that now of the time I have to remind myself and convince myself that there's even a problem and life isn't supposed to feel like this.

Has anyone ever recovered from these things during a remission?

 

[shannah]

For me, all symptoms, even these disappeared during remission.

 

[Aerose91]

For me, all symptoms, even these disappeared during remission.

Thank you for sharing that, it gives me hope where there isn't any

 

[Aerose91]

I thought SOCS post was a good one. It is correct that not all with depression are sad, some have blunted emotions and cant feel throu them due to depression. This symptom can be a sign of depression and is likely in those who are feeling this symptom.

ME can also cause havoc thou with the feelings and body too. I lost my ability to feel fear at one point.. it was like I wasnt producing any adrenaline and no fight or flight response at all while at other times I'd get an adrenaline rush for no reason at all. I once almost got hit by a tram and felt no fear response at all. My whole system was wacked out. There have been times Ive lost my ability to feel temperature eg something hot

currently.. Im loosing at times my ability to feel hunger or thirst, my body isnt producing those signals at times but my emotions are good

I have this as well, although i have also lost all feelings, emotions and connection to reality.

My startle response is gone. I had a pitbull barreling at me recently with teeth full-bored and i felt nothing- just utterly flat. My heart rate didnt climb at all and i didnt even flinch. Just nothing all the time, 24/7

 

[xks201]

Anhedonia is found in just about every untreated patient with multiple hormone deficiencies.

 

[Hip]

Anhedonia is found in just about every untreated patient with multiple hormone deficiencies.

Would you have a reference for that, and details of the hormone deficiencies you mention?

 

[Hip]

Emotionally I've headed in the OP's direction: mild, but certainly" palpable" loss of emotions. I never thought of it as "anhedonia".

Loss of emotions isn't classed as anhedonia.

Anhedonia is defined as the inability to experience pleasure from activities usually found enjoyable, such as exercise, hobbies, music, sexual activities or social interactions. In other words, you no longer get a pleasure and reward feedback from all the activities you once liked to do. But reward is not an emotion.

Emotions include love, sadness, compassion, guilt, anger, joy, surprise, etc.

The technical term for loss of emotions is blunted affect.

More info on the difference between anhedonia and loss of emotions in my post here.

 

[Aerose91]

Anhedonia is found in just about every untreated patient with multiple hormone deficiencies.

I had very,very severe adrenal fatigue before M.E. (which is probably what led me here) and every single hormoje ever tested in me was dangerously low, and though i definitely had depression, anxiety and hopelessness, i never had anhedonia.

What i have now is absolute worlds apart and actually my hormones are higher than they were.

 

[xks201]

Aerose, as much as I love psychological diagnosis, I doubt anyone truly has ever had pure anhedonia. There is a lot of overlap between the notions of feeling nothing at all and feeling depressed. Anhedonia is subjective, let's be honest. Any anhedonic could be enraged if you pushed the right buttons. Hormones are complex. Most endocrinologists don't even understand them well or test the right ones. Subjective diagnosis of adrenal fatigue is kind of useless without an acth stim test or a 4x daily saliva cortisol test. I have known people with high adrenal hormones that have fatigue and the same symptoms as some people with low adrenal output.

here is the data on psychological comorbidity with hormone disorders. It's common sense to me, but maybe because I was diagnosed as hypopituitary requiring treatment. My adrenal fatigue was real and if I didn't get treatment for my hormone deficiencies I would have most certainly died quickly.

I had very,very severe adrenal fatigue before M.E. (which is probably what led me here) and every single hormoje ever tested in me was dangerously low, and though i definitely had depression, anxiety and hopelessness, i never had anhedonia.

What i have now is absolute worlds apart and actually my hormones are higher than they were.

 

[xks201]

Here is the apathy and hormone deficiency study..
http://www.ncbi.nlm.nih.gov/pubmed/15939968

 

[Hip]

Anhedonia is subjective, let's be honest. Any anhedonic could be enraged if you pushed the right buttons

Rage is an emotion, and as mentioned, anhedonia is a lack of pleasure, not lack of emotion — although it is not uncommon to have both anhedonia and lack of emotion (blunted affect) together. But no amount of emotion will ever remedy anhedonia. If you have never experienced anhedonia, it's hard to relate to or imagine. I had severe anhedonia for several years, and I can tell that it is unrelentingly hellish, in a way that is difficult for people who haven't experienced it to appreciate.

And apathy is not the same as anhedonia either. Apathy is really another term for lack of motivation. Lack of motivation is a reduced inclination to start or engage in tasks. Having lack of motivation means you do not tend to initiate into tasks and purposeful activity. Whereas anhedonia means that you don’t get the feeling of reward or satisfaction on completion of a task this sense of reward or satisfaction is the mental "payoff" we all like to feel when we have done something useful.

Lack of motivation is due to problems in the motivational circuitry of the brain; anhedonia is due to problems in the reward system of the brain. You can of course have anhedonia and lack of motivation together.

People with severe anhedonia very often get the constant intrusion of suicidal ideation (suicidal thoughts). You cannot control these suicidal thoughts, because they are a product of the anhedonic state.

So anhedonia, emotional flatness (blunted affect) and lack of motivation (apathy) are three distinct states, and an individual may suffer from one or more of them.

At my worst state, I had severe anhedonia, emotional flatness and lack of motivation all at the same time. My God, that was a really hellish period.


What was the nature of your hypopituitary symptoms, xks201, and how were you treated for them?

 

[Martial]

I had issues with anhedonia, which have gotten very severe as of more later months/weeks... I do not have blunted emotions anymore though, I used to with severe depersonalization that cleared up... The suicidal thoughts and impulses came with it..

I don't really follow or believe in any of it though, in my case I am just pinning these things down to lyme symptoms, as its obviously creating inflammation of the brain, and hypo perfusion...

If others here have similar I would suggest getting tested for lyme as well, the inflammation can trigger this very easily, where as at least in my understanding the inflammation from CFS is not as severe as lyme and people do not get as severe of emotional issues... Maybe anxiety and depression to degrees, I however have already experienced full spectrum psychotic visual hallucinations, auditory hallucinations, dementia feelings, etc... Weird stuff, the hardest part is not having people around you believe its all from underlying infections, I don't mind feeling like this and am not going to hurt myself... It just sucks having friends and family feel like you are withdrawing and becoming increasingly despondent for other reasons.

No one around me believes I have lyme, but having tests with IgeneX from my LLMD will hopefully show them this.. Even then though they would probably say Lyme doesn't make you THAT impaired... No winning with some people lol

 

[Hip]

@Martial
I also think my anhedonia, emotional flatness and lack of motivation are caused by inflammation in the brain, and in fact, the anti-inflammatory protocol I used for treating some severe anxiety symptoms I had (this protocol is detailed here), seemed to not only eliminate my anxiety, but also made great improvements in my anhedonia, emotional flatness and lack of motivation symptoms.

So I would recommend that anyone experiencing a new onset of mental symptoms try some anti-inflammatories to reduce brain inflammation, as this may significantly help.

I subscribe to the school of thought that many mental symptom and mental health conditions are likely caused by infection, and the neuroinflammation that can result from infection.

 

[Martial]

@Hip I agree! I have been using an anti inflammatory diet as well, unfortunately it will still take some time to get the infection down enough for the bulk of brain inflammation to go down though... It is getting much better though, it is kind of an up and down process..

 

[Hip]

@Martial
You might want to try some of the anti-inflammatory supplements listed in the first two posts of my thread here. The NAG seems to work very well for many people, but NAG may not be such a good idea in Lyme, as theoretically NAG may feed Borrelia. But there are plenty of other tried and tested anti-inflammatory supplements on that thread (by tried and tested, I mean by myself and by other members here).

 

[Wally]

Is it possible that some of these symptoms result from inflammation or injury to part(s) of the brain?

We know so little about how the brain functions yet some medical professionals are so quick to say these symptoms are psychological without any organic basis. I wonder if directing more research toward possible organic causes of symptoms that seem to generate from the brain would open up new clues about this illness?

In doing a little "surfing" about this symptom, I found some of the information about frontotemporal degenerative brain disease to be interesting. See, http://www.theaftd.org/frontotemporal-degeneration/ftd-overview. Perhaps review of findings related to similar problems seen in different types of brain injuries could provide a few more clues as to what these "blunted emotions" may be revealing.

I think it is important to note that in ME/CFS patients with these types of symptoms (i.e. blunted emotions), there are reports of these symptoms improving even after long periods of illness. Sometimes the improvement is seen when a particular treatment, such as an anti-viral has been used. However, since there is not a lot of information available right now to figure out who might be a responder to a particular treatment it is a game of trial and error - dependent upon whether or not a patient can 1) afford the cost of treatment and 2) find a physician who will prescribe and monitor the course of treatment. Sure wish at some point they would take a good look at the brains of patients who have been diagnosed with ME or CFS and who also meet (at a minimum) the definition of the illness described in the Canadian Consensus Criteria (CCC).

Edit - @Hip and @Martial. Sorry, I had not seen your posts about inflammation during the time I was "surfing" and typing my response - I did not want you to think I was ignoring your posts.

 

[Aerose91]

Aerose, as much as I love psychological diagnosis, I doubt anyone truly has ever had pure anhedonia. There is a lot of overlap between the notions of feeling nothing at all and feeling depressed. Anhedonia is subjective, let's be honest. Any anhedonic could be enraged if you pushed the right buttons. Hormones are complex. Most endocrinologists don't even understand them well or test the right ones. Subjective diagnosis of adrenal fatigue is kind of useless without an acth stim test or a 4x daily saliva cortisol test. I have known people with high adrenal hormones that have fatigue and the same symptoms as some people with low adrenal output.

here is the data on psychological comorbidity with hormone disorders. It's common sense to me, but maybe because I was diagnosed as hypopituitary requiring treatment. My adrenal fatigue was real and if I didn't get treatment for my hormone deficiencies I would have most certainly died quickly.

Thank you for sending that study, i will look into it.
Since my adrenal fatigue began 4 years ago i have had a 4 or 5x saliva test done every 3 months. At the beginning i was almost at addisons level as well as low DHEA, Pregnanolone, Testosterone and HGH, and yes, i was very depressed and emotional- i was a roller coaster.

Since the M.E. started my cortisol has actually gone higher anzd that deep hopelessness and depression has mostly subsided. However in lieu of the hypoperfusion and inflammation in my brain an anhedonia, emotional blankness and overwhelming "nothingness" has taken over.
These are very, very different feelings from what i felt during an adrenal crash.

Not to say there cant be some overlap and an endocrine dysfunction doesnt wreek havoc, because it does, but like Hip said, if you havent experienced it you cant fully understand it.

That said, both feelings suck!

 

[xks201]

I am sure I have experienced it. The fact that your condition isn't static, constant anhedonia is an indicator that these symptoms are just that and not an organic disease that correlates with a constant state of anhedonia. Basically what I am saying is that different reactions in different peoples' bodies cause different symptoms.

In your 4x daily saliva cortisol test did you have higher levels at night? I have seen people who have diurnal rhythm problems in their saliva readings. I just have never seen someone have completely addison levels all 4x on a saliva test and then recover without HC or in your case have elevated cortisol. That makes 0 sense.

Most people with true adrenal insufficiency do not bounce back with high levels of cortisol. I have never seen or heard of that, which makes me believe that something else is at work here other than adrenal insufficiency - possibly wild fluctuations in thyroid hormone levels?

In other words - if it was as simple as - oh you have or had adrenal insufficiency - you'd be cured now with your higher cortisol levels.

Considering that thyroid hormone allows cortisol to enter the cells, perhaps your low adrenal hormone output was related to your pituitary improperly sensing the level of thyroid hormone the entire body was demanding. The pituitary secretes TSH in response to local thyroid demands but has no idea of the thyroid demands of the entire body. This is just one hypothesis- that your thyroid hormone levels are truly inadequate to get cortisol into the cells so cortisol pools whereas before possibly thyroid hormones were high and using up cortisol.

I don't know if this is your case or not but in any event it would be nice if you tested free t3 and free t4 simultaneously to cortisol so you could establish a context for your adrenal health. Unless one has an ultrasound of the adrenal glands to see if they are markedly diminished in size given your observations of high and low cortisol fluctuations, I'd say something else was/is at play other than primary adrenal insufficiency.

Getting that scan is probably a tough order to most doctors who really could give a crap about our health.

 

[Aerose91]

There was still a small varience in my cortisol throughout the day. It is very low all day but highest in the morning, very low afternoon and evening and then creeping back up at night. My rythms are backward, and though i wad close to addisoms level i never quite reached it. I was so sick at one point though that my doctor refused to treat me until i was cleared of addisons by and endocrinologist.

ive had my free t3, free t4, reverse t3, total t3, t4 and tsh checked every time ive had my cortisol checked. its always been low but in the gray area, never clinical hypothyroid levels.
My doctor is doing some mitochondria testing with me now because he is certain that i have that i have that issue. He said that the severity of hypoperfusion in my brain follows that pattern. either way this is definitely a whole different monster.