PwME and synesthesia

Disclaimer: I don't have sound or light sensitivity but I have synesthesia. (Senses are weirdly connected in the brain: when music plays I automatically "see" it in my mind - movement, shapes, colours. I also "see" numbers and letters in colour - in my head it is a fact that 1 is white, a b is always green, etc.)

So I was just wondering if these sorts of sensations (all that movement, colours etc especially triggered by music/sound) add an extra level of difficulty, extra level of stimulation to pwME who have both this "condition" and the sensory sensitivites of ME/CFS or it doesn't make a difference.

Or maybe if the person has no sound sensitivity and listening to music is not affecting them, can the movement, shapes and colours triggered in their mind by the sound still affect their other sensory sensivities? Or not really.

Obviously this is mostly directed at people who experience both synesthesia and those sensitivities and I don't know how many people like that are here on the forum, maybe none. But I'm curious and maybe someone at some point in the future will come and answer this question.

 

I have mild sound and moderate to severe light sensitivity as symptoms of ME.

I've always percieved numbers as being "friendly" or "grumpy" (5 is the most friendly prime number) and visual triggers often had a certain impression on me (certain shapes or colours feeling uncompfortable or aggressive). Dont know if that counts as synesthesia.

Interestingly one of my siblings is showing signs of being somewhere on the spectrum. He is extremely sensitive to certain triggers and for example describes smells as "being loud". He doesnt have ME though.

I imagine having ME with sound sensitivity AND synesthesia to be cognitively very exhausting.

 

I have synesthesia, since I was a small child. I don't find that it ties up with light & sound sensitivity for me, they seem to be two separate things in my case. I have light & sound sensitivity (moderate now, was severe when I was at my most severe). But I find the synesthesia enjoyable rather than causing difficulty, seeing colours & shapes in my mind when listening to music. It doesn't bother me or cause problematic stimulation.

 

I do a bit of beta testing games software sometimes. I get synaesthetic smells from software, the more buggy it is the more pungent it is. Obviously software has no odour but I really do smell it. Software which works properly without bugs does not have any odour.

I am also hypersensitive to real odours, especially artificial chemical odours. I really cannot stand most modern household and personal perfumes, they are over stimulating and make me quite tetchy so I try to exclude them from my environment. Most plant based essential oils are OK in moderation which I add to my washing. Also I quite like the traditional 4711 cologne but cannot stand some of the colognes I used to wear before getting ME, the smells feel like they are cutting my brain.

I think there is something about ME which makes me very sensitive to sound as well, loud noises can really upset me and I have little control over it.

I have read theories that the whole nervous system is hypersensitive in ME patients, which is not helpful as we tend to be so easily exhausted as well as easily stimulated.

When I am going through a bad patch sometimes I have episodes when whatever I see looks exquisitely beautiful and colourful and this is often linked to emotional euphoria. I know now that when this happens I need to be very careful and rest more than usual otherwise my mind can start racing and I had periods when undiagnosed when I could not sleep for several days on end due to this, it is like a vicious spiral of hypersensitivity and hyperactivity. I think it is caused by something in the nervous system changing due to the way my ME fluctuates. It took years to recover from the state I got myself into before diagnosis.

 

To save me re-typing, I'll quote from my story, this part is from a hospital visit back in 2013:

Visiting hours were unbearable for me. I have sound to touch synesthesia which can be very painful. It feels like being beaten. This is a consequential symptom meaning the more I'm exposed to an offending sound the worse the pain gets and the more sensitive I become. Sensory symptoms of ME are best viewed as progressive autism. I had to discharge myself early after 11 days of staying as an inpatient. It took me a year for my sound sensitivity to recover.

When I explained my symptoms including sound sensitivity the rheumatologist said in a patronising tone, “that sounds like anxiety”. She also said that “You've got my whole life ahead of you” totally ignoring my severe symptoms. I felt belittled and as if I was being treated like a hypochondriac. No body showed me any sympathy what so ever.

 

One of my favorite books (which I waited years for to come back into print before I could buy it) is The Mind of a Mnemonist by A.R.Luria. I came to it because of my interest in memory, it's about a patient of Luria who had a perfect memory because of his synesthesia. If I remember rightly (I read it many years ago) he experienced everything with all five senses, creating such deep impressions that he could never forget anything.

 

It most certainly is.