Need for Quietness and Solitude - are these typical CFS/ME symptoms?

[Hip]

I am not sure whether my increasing need for quietness, solitude, and spending a lot of time away from people, and away from television, newspapers, books, etc, is part of the normal cluster ofd CFS/ME symptoms.

Does anyone else experience this tendency to withdraw from the world a bit? I don't mean withdrawing just because you are suffering from high fatigue at that time, and therefore just need to sleep or take a break. Even when my energy levels are relatively OK, I often prefer to shy away from these general stimulii of people, TV, newspaper articles.

The need to be away from these stimulii is because the amount of information input often overloads and confuses my mind.

If I have to go to a social occasion, like a small party or family gathering, where there is noise and people and conversation, I can manage, and I can "perform" reasonably well for a few hours (I used to like parties); but afterwards I find my mind is shattered for two days, as if my mind needs days to resettle itself, to slowly come back to itself, or to center itself again. This is without having any alcohol, and sticking to my health diet. During these recovery days, I often cannot even watch TV, go online, answer email, as my mind is that "raw" and delicate.

Does anyone else experience this sort of thing?

Does anyone else get this information overload problem, that takes days to recover?

Is this a normal part of CFS/ME?

Also, a closely related thing: Nowadays, I am particularly bad at following the background context of the information in front of me. For example, I used to read a lot (science, art, philosophy, spirituality, novels, etc, etc), and had eclectic reading tastes. I could easily dive right into any context (eg: the historical era, the geographic setting, the social or idealogical values of the time, etc). Whatever area I was reading, my imagination would easily construct the background context of the story or article. But now my mind often strains to imbue itself with the background context and flavor of a book, newspaper article, TV program.


DOES ANY OF THIS SEEM FAMILIAR TO ANYONE ELSE WITH CFS/ME?

Or could this be some other neurological symptom?

Thanks for reading.

 

[Carrigon]

Sensory Overload. Alot of us can't take noise, light, smells, it's all too much. People are too draining on us. Our brains practically short circuit. Sometimes, you can have all this at a milder level, other times, it's severe.

I can't be around alot of people for long. And just a social visit with one person can kill me. Some of it is the audio processing disorder. I have to concentrate a thousand times harder than a normal person just to try and understand what someone is saying to me. So it flares me up and I get headaches.

I have a friend who is getting married in April and I doubt I can go to the wedding. There will be music, bright lights, lots of people, everyone wearing perfumes and colognes, flowers, like OMG, it's going to be a mecca for MCS and neurological flare ups. When she said she was making her wedding music list, I just wanted to run away. I won't be able to go. I just haven't said anything yet. And they are planning a very long day. The reception won't even be until dinner time. I know I can't do it.

 

[julius]

As far as I know these are pretty common in CFS.

Personally I can say that I fit this description exactly.

There has been some association drawn between autism (asperger) and CFS. You may find it interesting to look into that a bit.

 

[mezombie]

I definitely can relate to this problem, Hip. Too much sensory overload (and it doesn't take much) and I need to withdraw. If I don't, I get a feeling of motion sickness that lasts for many hours and sometimes days.

I think it is a part of ME/CFS for many people to differing degrees. For me, it is very severe and one of my worst symptoms. It makes it very difficult to participate as I would like in this forum.

Heck, it makes it difficult to participate in anything! For example, I'm ambulatory enough to make it to a subway station, but if it's crowded and I have to transfer, I may easily find myself heading in the wrong direction and having trouble figuring out how to get back home.

I have told numerous doctors who have asked me to name my top worst symptom that it is this dizziness/headache/nausea (like a hangover).

I've had this for the past 20 years of my illness. It's been investigated, and it appears there is something wrong with my vestibular system. This is a feedback loop between the eyes, ears, and a part of the brain. As my eyes and ears check out OK, I gather the problem is in my brain.

I also have extreme light sensitivity which makes dealing with a computer monitor quite arduous, even with adjustments to my monitor's brightness and color.

Reading for more than 15 minutes or so will bring it on.

And, like you, the only thing that helps is to withdraw. I often need to lie down in a dark room to recover from seemingly little stimulation.

So you are not alone. Not at all. If I wasn't feeling overloaded today I might be able to give you citations to some articles.

This is very much a part of ME/CFS.

 

[mezombie]

Actually, this is part of the criteria for the Canadian ME/CFS Case Definition (see No. 4)

 

[Lily]

Yup, Hip, I'd say I fit your description exactly too. There was a sort of gradual onset of those symptoms that increased over the years which very much contributed to my inability to continue to work. The effect of sound, noise, light, smells all create a problem of their own and hugely contribute to the fatigue factor.

 

[bee33]

As far as I know these are pretty common in CFS.

Personally I can say that I fit this description exactly.

There has been some association drawn between autism (asperger) and CFS. You may find it interesting to look into that a bit.

I think that's a very interesting issue. I wonder how many people here consider themselves to be slightly aspie? I've always found it very difficult to be around people; just their presence makes me anxious. I almost never look people in the eye when I talk to them because it feels overwhelming. I find it hard to have a conversation because I don't feel at ease and am never sure I understand other people's cues, and therefore I feel like I could be offending them by not making the right response to what they are saying.

As far as being overwhelmed by stimuli, I find that I can't tolerate loud noises, like very loud music. I have to cover my ears and leave the room, or if I stay I grow increasingly distraught, as if someone has been repeatedly tapping me on the head. (But if it's a song I know and like, I'm much better able to tolerate it, because it sort of finds a place in my head, if that makes sense, and I'm taking it in rather than fighting with it.)

 

[julius]

bee33, your description is just like mine (and Hip apparently). I was actually diagnosed with Asperger by a psychiatrist.

Having said that, he wasn't an autism specialist. And I have very little faith in/respect for psychiatrists or the DSM anyways. But the way both of you describe yourselves, I would expect that you would fit the DSM IV description of Asperger Syndrome. The hypersensitivity is a pretty classic trait in autism of all severities.

Whatever it is, it really sucks. I can say that for sure!

 

[bettine]

Hip,
I have exactly the same thing. It seems to have to do with sensory overload.
I recognise exactly what you describe. Am not so sure it has to do with Asperger's. I never had this before I got ill.

 

[bee33]

bee33, your description is just like mine (and Hip apparently). I was actually diagnosed with Asperger by a psychiatrist.

Having said that, he wasn't an autism specialist. And I have very little faith in/respect for psychiatrists or the DSM anyways. But the way both of you describe yourselves, I would expect that you would fit the DSM IV description of Asperger Syndrome. The hypersensitivity is a pretty classic trait in autism of all severities.

Whatever it is, it really sucks. I can say that for sure!

I have never been diagnosed with Asperger's. I even told a therapist (clinical psychologist) about a year ago that I thougt I might have at least some mild aspie traits, but she insisted I had a schizotypal personality, which really made me feel discouraged because it doeasn't fit at all. Schizotypal personality disorder is characterized by paranoid thoughts and magic thinking, which I don't have at all. I'm extremely logical and I don't believe in signs or meaningful coincidences at all. And I'm much less paranoid than the average person. If anything I'm a bit naive. (All of which I believe are aspie traits.)

I also don't have much faith in psychiatrists...

And bettine, I think you're right that there may not be a link. Perhaps it's only true for some and not for others. I haven't heard many pwc say that they thought they might have Asperger's.

 

[julius]

The only reason I bring it up here is because it is possible that the two could just be different expressions of the same disease, ie; neuroimmune disease. I have no idea how things will turn out after the smoke clears on this XMRV thing, but we could end up with a whole new understanding of many different conditions.

This is all just speculation though.

 

[jace]

I have lo limit my social time severely too. Christmas, with all my lovely people, so fun but after 4 hour I had to go. And it took days to get back to level best (possible at present) Birthday, same thing.

 

[fds66]

I have to limit my time with people too and end up craving peace and quiet. That is not my natural state - I love people and company and chatting and yet I am physically incapable of dealing with all the noise and excitement for very long. So it is hard for me to ration my time with people and can very easily wear myself out totally when there are other people around. I hate lying in bed and listening to everyone else chatting and having fun and feel like I'm missing out and yet so relieved that I can rest.

 

[HopingSince88]

I am so affected by noise and the resulting confusion that I moved to a minimally populated rural island. City noises, parties and all such activity thoroughly overwhelms me. During the summer when the hoards of summer folk arrive on the island I close my doors and windows. Luckily the summer season is very short where I live, and I have 10 months of peaceful solitude and bliss.

I can't understand what someone is saying to me unless I have my glasses on...I read lips a bit. My hearing is fine (I have had it tested). I was told I have a 'processing' problem.

 

[creekfeet]

Actually, this is part of the criteria for the Canadian ME/CFS Case Definition (see No. 4)

Yup! I've been reading my slow way through the Canadian case definition and just the other day I came across this and recognized myself and my kids in it.

There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.

 

[Sing]

Dear Hip,

I have the exact same problem as you described in the first part of your message. However, not the second part where you described having to struggle to retrieve the context for information. At least, I can read and follow information now, though I had a lot more trouble in the first several years. I am so grateful I can relate to the context again.

However, I do have similar things happening--There is often a lag time before that retrieval starts to occur--sometimes after the event, if the event is a brief conversation, say. It is afterwards I remember...But if I have enough time before or during, I can retrieve the context.

And my mind can also stop tracking something at any time. Suddenly my orientation will drop out, but then it will re-emerge again.

I do take care of myself, tend my life, largely in solitude, even though I am a very friendly person and would like to be more engaged socially. I used to dance and even play drums, if you can believe it. I could soar on music and dancing. But now I can only listen to a little music once in a while, and as for dancing, those days are apparently done.

Rest and quiet with an open mind and heart can be generative, as well as re-generative.

When possible I exercise myself, you could say, with reading, thinking, writing and talking....

Sing

 

[Hip]

Many thanks for these interesting replies. It certainly seems that "information overload exhaustion" is pretty common, even for small amounts of information.

In terms of the "retrieving the context" side of things: just to clarify a bit more: I mean how easily you engage your imagination on a given subject area. Say you are watching a TV documentary about 1960's culture, music, ideologies, etc (we have all seen many of these on TV over the years). Therefore most of us have a mental database on this era (even if we were too young to be there at the time). So when we get new information from such a documentary, we normally simultaneously bring forth, in our imaginations, the ethos of this era, this ethos being the context for the new information (facts and details) we are presently getting from the TV documentary. The context allows us to make more sense of the information.

The reduced ability to imbue your mind with the required context/ethos is what I experience, especially when tired.

I think this difficulty I have bringing forth the context and ethos, especially when I am tired, may be related to the task-switching (multitasking) difficulties in CFS.

 

[starryeyes]

I've had some of these problems all my life. I'm often not "all there" as people like to tell me. They say I'm spacey and slow. This all seems to come and go for me. It does seem worse now that I'm worse overall. If I'm not feeling too badly I still like quite a bit of stimulation though and I can follow some things but I poop out quickly if I try to study something and I feel way worse whenever I have to shift gears especially if other people are trying to get me off the track I'm on and do something else. I've always needed to spend a lot of time alone but I need some kind of music on. These days I listen to mellow instrumental healing music.

 

[oerganix]

Yeah, me too, on the overstimulation part. Loud music or other noise makes me feel dizzy and disoriented, like trying to walk on the deck of a boat sloshing back and forth on water. If I can't get away from it soon enough, or I'm already very tired when it happens, it can make me feel like crying in desperation. When the loud celebrations with fireworks and explosives went on all the month of December here in Nicaragua, I had to sleep with earphones, playing white noise all night long. I still do that sometimes such as when a big group of kids plays baseball in the street in front of my house with the yelling and cheering.

Likewise on being around other people, especially crowds or groups where I need to pay attention to more than one person. It is very exhausting to me and becomes unpleasant after a few minutes. All of this came about after I got sick. I also have tinnitus - sounds like a million screaming cicadas day and night.

I used to give and go to parties, but no more. Used to dance for hours to loud music. No more.

 

[jace]

As a sailor, I find coping with the swell running in the sidewalk quite easy It's curious how many dancers are here - me too, I was the crazy dancer of the Schooner Inn, and occasional Brighton club scene...

I can't ride the music in that way any more. Just getting to the shops requires as much concentration these days