• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

New paper: Progressive brain changes in CFS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Anyone older had this? I have it currently, and am almost 63. I have been ill for 21 years but never had this before.

Something physical has happened and I am longing for it to come back. It is devastating.

I can hardly do anything without mental exhaustion, and have lost my memory for a lot of things. Some are coming back, but it is so slow.

I think stuff like phosphatidyl choline helped restore this in the long run. So did probiotics -- dramatically enough that after I took a (pretty high) dose, I got a flood of ideas for writing so intense that I couldn't sleep. Got up, wrote stuff down, laid back down... more ideas. Got up, wrote stuff down...

It was as if the ideas had been waiting there for me to notice them, a passageway all clogged up and finally opened again. So odd.

-J
 

u&iraok

Senior Member
Messages
427
Location
U.S.
I lost my creative ability during the acute phase. All of it.

I've been writing stories since I could hold a pen: little black-and-white notebooks filled with fiction from five-year-old me. It was like a door to my core self slammed shut and I couldn't get in anymore.

Coming back, now. Thank heavens for neuroplasticity. But still more logically-oriented than I used to be, less prone to leaps of creativity. It's the creepiest.

-J

I wasn't the most creative but I lost some of what I had, including writing.

One disturbing thing was that for a while I lost my music appreciation, especially for classical music. I would listen to music and it would just be flat and dead. I really hated that. Thank goodness it came back.

I think there's always hope that things can come back. The neuroplasticity is an amazing thing.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I wasn't the most creative but I lost some of what I had, including writing.

One disturbing thing was that for a while I lost my music appreciation, especially for classical music. I would listen to music and it would just be flat and dead. I really hated that. Thank goodness it came back.

:nervous:

There may not be an emoji that accurately captures my horror at the idea of losing music TOO.

I can't imagine. It's like suddenly going colorblind after a lifetime of being a painter or a designer.

-J
 

u&iraok

Senior Member
Messages
427
Location
U.S.
I began to lose my sense of smell, starting around year 30 of ME/CFS. I do miss the smell of flowers, food, the ocean...

If I squish a fragrant flower against my nose, I can still detect a scent.

I'm currently 53 and have been ill for 38 years.

Wow, that's a hard one. :(
 

Woolie

Senior Member
Messages
3,263
It makes no sense to me why there wouldnt be as after all they say that exercise helps prevent dementia (its often put on guides to help prevent dementia) .. or is that something which is being said by the medical profession a myth with no grounds?
I haven't heard that exercise protects against dementia. It is supposed to enhance cognitive function. In everyone. And there's a lot to suggest that in people who remain physically and intellectually active, the symptoms of Alzheimers may appear later. But neither slows down the actual brain changes that underlie Alzheimers, as far as I'm aware.

I want to support this work, because it was well done. And I take everyone's points about cost limiting study size. But I also don't want anybody to be freaked out unnecessarily. Its just way to early to be freaked out.

Not to minimise the very real and very distressing cognitive problems people are experiencing. We so want an answer to those. We just want it to be the right answer.
 
Last edited:

Woolie

Senior Member
Messages
3,263
Interesting, during my first year of moderate ME I became face blind to new people. I'm aware that a person is familiar but have no idea who they are or where I know them from.
I've had people approach me who use my name and clearly know me, but I've no idea who they are until someone tells me. On two occasions it's been people who've been to my home and shared meals with, but I've then failed to recognise them less than a month or two later.

People I knew before 2010 are still recognisable, but with a delay a fraction longer than is socially comfortable.

I've been trying to memorise new people by focussing on hair, glasses, clothes and idiosyncrasies. Some people change their hair colour far too often for my comfort!

@Mrs Sowester, this is really nasty and must be awful (I don't think I'm very good at faces either, but nowhere near as affected as you). The only slightly positive thing I saw in what you said is that the problem started in your "first year of moderate ME". If your problem were due to degeneration, we would probably expect it to take longer manifest itself. In other words, it could be more to do with poor brain functioning (due to high levels of cytokines, or something), which is reversible.

I guess one of the few diseases similar to ME where cognitive changes can be the first symptoms is MS. Is it worth looking into that, just to rule it out?
 

Mrs Sowester

Senior Member
Messages
1,055
Yes @Woolie I think (hope!) MS has been ruled out. When I first presented to my GP with ME he thought I'd get an MS diagnosis, when my first MRI showed lesions he told me to prepare myself. Luckily my lumbar puncture was clear and a second MRI a year later showed no change.
But it does still worry me, especially when I have pain in my right optic nerve or numbness in my face. There's a niggling doubt in me that whispers the doctors have missed something!
But I think that until a marker is found for ME it'll not be possible for many of us to be truly certain of our diagnosis.
 

Woolie

Senior Member
Messages
3,263
HI @Mrs Sowester, from what you said, I would definitely suggest pursuing the MS thing. I don't know a lot about it, but I do know that many patients have symptoms (a lot like yours) long before they show the markers for a formal diagnosis.

From what I gather, having MS is not necessarily worse than having ME. The most common form is relapsing-remitting, and many people go into permanent remission. Plus, they will offer you treatments that could improve your current symptoms.

But I guess comparing ME and other diseases is silly anyway, its not like any of use can choose which one we have. Besides, good or bad, if you do have MS, you want to get it monitored to minimse bad stuff happening. So always better to know.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
My physician, too, worried I might have MS. She tested me for some blood values and thought no, though... then she told me I might have some kind of "pre-MS" condition.

I remember I stared at her, horrified, and said, "if this is 'pre'-MS, what's MS like?!"

I never got a lumbar puncture though.

-J
 

Mrs Sowester

Senior Member
Messages
1,055
Hi @Woolie now that two neurologists have said I don't have MS and two ME specialists have diagnosed ME I just have to go with it unless something else happens. As far as my area goes I've had gold standard testing, better than most in the UK. But I do still worry.
I worry I'll have a flare-up of optic neuritis and wake up blind when my husband is away at work (he works away for weeks at a time in the summer) and I'll have to sit and wait till I hear a farmer or the postie to get help! But that's just me catastrophizing really, it's more realistic that it would be the just be blindness of my right eye in which I get regular pain and my husband is home far more than he's away, so the odds are that he'll be home in the event of any drama.
Also it's been six years, I'm sure I'd have had a 'loss' by now if it was going to happen. I've never lost control of my bladder, bowels or limbs.

@JaimeS if you, or anyone you know ever has a lumbar puncture tell them to lie down flat for 2 full days afterwards - I thought I'd dodged the headache when I was ok the next day so I spent the day as usual, mostly sitting up with my feet up - but the next day OH MY GOODNESS! The worst pain I have ever had (worse than end stage labour) it lasted 5 days, gradually moving up my spine to my head like a slow air bubble, pain that made me so nauseous I couldn't move or eat or sleep. Definitely not recommended!
 

Hip

Senior Member
Messages
17,914
One disturbing thing was that for a while I lost my music appreciation, especially for classical music. I would listen to music and it would just be flat and dead. I really hated that. Thank goodness it came back.

I suspect that may be a result of the ME/CFS flat emotions symptom, which is listed in the CCC.

I have these flat emotions (aka: blunted or flat affect), and I find I don't respond or enjoy all the music I once loved, I suspect because a lot of music involves arousing the emotions, but if your emotions do not respond, the music seems flat and pointless.

Also, I find the ME/CFS sound sensitivity (hyperacusis) definitely does not help either, especially for the rock music that I used to like. A Jimi Hendrix guitar solo doesn't go well with ME/CFS sound sensitivity!

My guess is that the flat emotions that can appear in ME/CFS may result from hypothalamus dysfunction (the HPA axis is thought to be dysfunctional in ME/CFS), because the hypothalamus plays a role in emotional responses.

I am always trying to find drugs or supplements that might treat my flat emotion symptom.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I am always trying to find drugs or supplements that might treat my flat emotion symptom.
I guess you have tried LDN? That fixes the flat emotion thing for me. Unfortunately tolerance seems to develop pretty quick. Currently I do a 2 week on/2 week off schedule that works. So 2 weeks of connecting with people followed by 2 weeks of being a hermit!
 

Hip

Senior Member
Messages
17,914
I guess you have tried LDN? That fixes the flat emotion thing for me.

I have tried LDN a number of different times over the years, but unfortunately I find LDN worsens my anhedonia (anhedonia often comes alongside blunted emotions; anhedonia is the loss of the feeling of pleasure or reward from daily activities).

But I have heard others say that LDN helped their anhedonia. So clearly LDN is working on the brain pathways that underpin blunted affect and anhedonia, and it seems LDN helps some people in this area, but worsens the symptoms for others.


I have found some supplements (see the list here) that reliably boost my emotions, but the effect is always transient, lasting for just a few hours; and if I try to take these supplements daily, their emotion boosting effect no longer works. So like you with LDN, there is a rapid tolerance and loss of effect with my emotion-boosting supplements.