Are you ok with reading?

[Tella]

I was once a fairly keen reader, but I haven't been able to read more than a short paragraph at a time since 2013. This is actually due to a problem with my basal ganglia (now understood to play a role in language processing). I'm generally okay in conversation but reading taxes me far worse. Though when I'm in a crash I've to be far more careful about my word load written/spoken/whatever if I want to come out of it.

Yes, same! Have to be so careful with each word. How did u find out about basal ganglia problems? They found inflammation there in those who died from ME. I just wish they would come up with a cure!

 

[Tella]

So sorry about your eyes.

According to the Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners there are Neurosensory, Perceptual and Motor Disturbances, which include Inability to focus Vision, Impaired Depth Perception, muscle weakness.

Slower performance in visual imagery and motor tasks (ventral anterior cingulate cortex was active when controls in study made an error but NOT in patients with ME).

I downloaded this Consensus - about 27 pages, and it has detailed medical ParaPhysiology of ME includes Nancy Klimas and David Bell. It is awe inspiring to see how much many ME patients have - I have learned a lot from this. Let me know when you fix your ME - unlike you I have it for very long time, and it has gotten much worse, which is not unusual, and it can't be fixed.

Not to discourage you, because for years I could do "normal" things with 12 hours sleep/day.
When I look back I was quite lucky - now, not so much
Starlily88

What do u think led u to become worse?

 

[Tella]

Since developing CFS I have had physical issues with my eyes that are only apparent when I try to read.

It's a very strange sensation and I've not encountered anyone else with the same issue or read about it anywhere, but it's basically that when I try to follow the words across the line (like this line) I find it difficult to control the "aim" of my eyes.

It's almost like my eyes are in a wave machine and the focus sort of veers above and below the line a bit, and then at the end of the line when I try to go down to the next one my aim is always off.

It doesn't sound much but it really prevents me from reading properly and unless it's something I'm really keen on reading I just give up as it's too frustrating. If I use a pen or something to direct my eyes it becomes easier but I can't do this when reading books or computers so it tends to just be articles on my phone.

Prior to developing CFS I never had these eye issues (I had previously had cognitive and mental issues for many years before anything physical developed) and since improving my physical issues a bit over the last 3 years my eyes have gradually gotten a bit better.

For clarity, I don't have any problems with my vision which is pretty perfect as far as I'm aware, just my "eye coordination" and it only really manifests itself at all when I read.

It tends to get worse when my inflammation worsens. Like for example I have SIBO and if I take medication to address that my CFS symptoms worsen (achiness, fatigue) and so does my vision problem, which makes me think the two are linked. I also take methylation supplements as this has been a serious issue for me in the past but if I've overdone it and feel my inflammation has gone up I get the eye issues again.

Anyone have any experience of this? Or any idea what it might be about?

Frankly I havent given the whole thing a massive amount of thought as to be honest the vision stuff is the least of my worries and is little more than a minor annoyance compared with some of the other symptoms I've had to endure.

Plus I sort of feel that if I can fix the CFS my vision will hopefully just sort itself out on its own accord. But it'd be nice to have some idea of what's going on here so any input would be great. Thanks in advance.

Hugo

Yessss. I can relate. Blurry can’t focus eyes. It’s so weird as reading smth on a smaller ‘page’ like a phone is better (but even that’s impossible when In a bad crash), but computer or especially book is like impossible at all!! Like I can’t finish the full line. Eyes jump and tremble!

 

[Pearshaped]

@Tella
I'd like to encourage you NOT listen to much to opinions of "professionals" when it comes to "using your brain & ME/CFS".
I am the living proof that cognition in ME can actually IMPROVE when cutting back light,communication and noise for a LOONG time.Don't worry,I mean it.

I believed the "use it or loose it"-idea.It had dramatic consequences for me and that I am here now,after being very severe for 2 yrs, can read and type is a miracle! thanks God!

Please consider"less is more".It can be healing.
Trust your body/brain.If it doesn't want to read it means its too much for you at the moment and would probably do more harm.Doctors always make the mistake that they compare or brains with healthy brains.

 

[Rufous McKinney]

I am the living proof that cognition in ME can actually IMPROVE when cutting back light,communication and noise for a LOONG time.Don't worry,I mean it

Its truely challenging...the cognitive issues are very intense, so very strange, and odd...how it expresses and how should one respond when- one is- relatively used to- reading, thinking, writing.

Its likely I am overdoing it mentally- alot of the time. Its seems to be the thing most reluctant to give up.

The limited energy seems to translate into- limited interests...i seem to be able to lift a bit...over an idea when I can't lift the towel.

But less is more- gradually I"m better...from massive non-doing. 5 months worth. Don't have to pay to go to the non-doing retreats.

Exercising my brain is not helpful currently. Its- just fine resting.

 

[Tella]

@Tella
I'd like to encourage you NOT listen to much to opinions of "professionals" when it comes to "using your brain & ME/CFS".
I am the living proof that cognition in ME can actually IMPROVE when cutting back light,communication and noise for a LOONG time.Don't worry,I mean it.

I believed the "use it or loose it"-idea.It had dramatic consequences for me and that I am here now,after being very severe for 2 yrs, can read and type is a miracle! thanks God!

Please consider"less is more".It can be healing.
Trust your body/brain.If it doesn't want to read it means its too much for you at the moment and would probably do more harm.Doctors always make the mistake that they compare or brains with healthy brains.

Yes that’s what I do most days. Not much sensory input apart from the phone. Hard to let it go as it’s a window to some communication I don’t look at it much when my body just can’t do it but I know I shouldn’t push. Did u not even listen to anything for a few years straight?
Well it’s just that I know generally in healthy people if u don’t use your brain much u do stop developing (as Brains constantly develop) and u are more likely to get dementia early etc. Also there was a study with ME patients who seemed to have some kinda brain damage after mental exercises so...

But I don’t lose hope!

 

[Tella]

@Tella
I'd like to encourage you NOT listen to much to opinions of "professionals" when it comes to "using your brain & ME/CFS".
I am the living proof that cognition in ME can actually IMPROVE when cutting back light,communication and noise for a LOONG time.Don't worry,I mean it.

I believed the "use it or loose it"-idea.It had dramatic consequences for me and that I am here now,after being very severe for 2 yrs, can read and type is a miracle! thanks God!

Please consider"less is more".It can be healing.
Trust your body/brain.If it doesn't want to read it means its too much for you at the moment and would probably do more harm.Doctors always make the mistake that they compare or brains with healthy brains.

I agree the body will tell us when it’s too much. Sometimes we don’t know tho until we get that PEM...
also sensory deprivation doesn’t seem to be good for people altho it’s needed in ME patients...it’s like a two sided coin.

 

[Pearshaped]

No for two years no talks no phone calls no textmessages,no notes or birthday cards no podcasts,no books. no visits.
nothing.constant eyemasks. and earmuffs.
I was busy to survive a that time.
I was not able to think,it was horrible.
I even wasn't able to pray.
I really suggest you give your brain the break it needs every now and then.
all the best for you

 

[Rufous McKinney]

I really suggest you give your brain the break it needs every now and then.
all the best for you

So very glad to know- its not this difficult now..and your doing better.

What did happen- during this time of sensory deprivation? Do you think about the past, or relive old memories?

such a difficult thing.

 

[starlily88]

No for two years no talks no phone calls no textmessages,no notes or birthday cards no podcasts,no books. no visits.
nothing.constant eyemasks. and earmuffs.
I was busy to survive a that time.

How did you pay bills/rent etc during 2 years of this?
What happened after 2 years of this - did you get better? Wasn't everything like sensory overload?

 

[Pearshaped]

@Rufous McKinney
I couldn't think. I just existed.I was focused to breathe(had hard time breathing)and even drinking was very exhausting.Now that I am better cognition wise,I have time to think.

@starlily88
before it was so bad I was already ill for a year and lived in my parents house again.And was already bankrupt.Still in process for disability..
but now i get off topic..

 

[Tella]

@Rufous McKinney
I couldn't think. I just existed.I was focused to breathe(had hard time breathing)and even drinking was very exhausting.Now that I am better cognition wise,I have time to think.

@starlily88
before it was so bad I was already ill for a year and lived in my parents house again.And was already bankrupt.Still in process for disability..
but now i get off topic..

Wow. Must have been hard. I know when it happens to me u just feel like death, only way I can describe it. Were u able to eat at all?
I know. U are right. I need the break. It’s just too hard to switch off, even when thinking hurts. As your body goes against It all. It just can’t accept it.

 

[Dufresne]

Yes, same! Have to be so careful with each word. How did u find out about basal ganglia problems? They found inflammation there in those who died from ME. I just wish they would come up with a cure!

I believe you're thinking of another ganglia. Indeed there are autopsies of severely ill ME/CFS patients that showed abnormalities in the dorsal root ganglia. However, what I was referring to was the basal ganglia, two regions on either side of the mid-brain; they're involved in movement, motivation, reward, etc. They also seem to be involved in language processing, but it's my impression this is not well understood. Cort has written some great articles over on Health Rising about basal ganglia involvement in the illness for some.

 

[Tella]

I believe you're thinking of another ganglia. Indeed there are autopsies of severely ill ME/CFS patients that showed abnormalities in the dorsal root ganglia. However, what I was referring to was the basal ganglia, two regions on either side of the mid-brain; they're involved in movement, motivation, reward, etc. They also seem to be involved in language processing, but it's my impression this is not well understood. Cort has written some great articles over on Health Rising about basal ganglia involvement in the illness for some.

Sorry n thnx for the explanation

 

[ellie84]

I can't read anymore can't play videogames, can't watch films or tv series. I can't explain why, I just can't do it. I lost interest (fluctuating anhedonia), but also I want to read. But I can't. I have a very reduced concentration span now, usually I can read 2-3 lines and then I lose track and I have to re-read again. But it's not even that, because if I find something interesting I can concentrate more. But I rarely ever find something that really interests me these days. I have a pile of books and stuff to read, but it stays there. Really not happy with this situation

 

[Wishful]

I can't read anymore

Oh, that would be a nightmare for me. There are times when my ME symptoms are really bad that I find it difficult to enjoy reading, but those situations are thankfully rare and fairly short.

You have my sympathy. I wish I could offer some suggestions that would help, but I haven't encountered anything that works on my temporary inability to read.

My worst impact from C19 is that the library is closed, but I bought an ebook reader, so I'm not suicidal yet.

 

[ellie84]

Cool! Have fun with your ebook reader. We can also borrow ebooks from the local library, don't know if it's an option for you.
I also have a pile of books from the library from when it was still open. I've only read a few pages and it's been weeks. Ughh... let's hope for better days.

 

[Wishful]

Yes I can borrow ebooks from out library, but it's proving to be quite difficult. My Kobo doesn't seem to want to actually downlaod the ebooks. Downloading them to my computer and then moving them to the Kobo works, but only if they don't have DRM. Adobe Digital Editions is not linux-friendly. Oh well, I'll figure something out.

I have a pile of holds waiting at the library, but it's closed until further notice. *sigh*

 

[glazevedx]

Does anyone know whether this difficulty in reading has some connection with Irlen syndrome?

 

[Rufous McKinney]

But it's not even that, because if I find something interesting I can concentrate more. But I rarely ever find something that really interests me these days. I have a pile of books and stuff to read, but it stays there. Really not happy with this situation

Sounds real familiar here.....