What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

I detect the electrical buzz from non earthed metal switches and double insulated metal such as the bezel of our 1 year old Sony tv. Any metal object situated under ht pylons seems to buzz for me it’s not really at shock level more of a vibration tingle. Playing games, my wife touches the object or not while we hold hands and I look away. She feels nothing, but I 100% detect her contact or not with the live object. I have managed to draw a spark / crack but never seen the glow. When I used to work with hf radio transmitters I could feel the radiated ‘warmth’ as the power increased from a short distance. Never related either talent to ME or meet anybody else that got a buzz or perhaps they would not admit such things. Historically I have had plenty of electrical shocks so perhaps more susceptible?

 

sounds like the pain i get when very small blood vessels burst or leak can see the little red spots afterwards learned to ignore it a very long time ago even though some of the red spots stick around for a very long time afterwards.

 

i have not seen any mention of hot flushes this was a very disabling symptom for me between the 5 +10 year mark it been under control mostly with atenolol . plus eye pain and the feeling that my eye balls are swollen to big for their sockets . just to add re hot flushes i am a male

 

Oddly, it doesn't leave a mark. Quite annoying for it to be so sore & nothing to show for it!

 

One thing I experience, that I have not come across anyone else mentioning, is episodes of ‘jamais vu’, that is when on a familiar route I unpredictably loose any idea of where I am and how to get to where I want to go. I fail to recognise places or landmarks that I normally know very well.

When walking it usually is not a problem as it may only last minutes or seconds so can be waited out, or I can use general knowledge (eg the pub is behind the church, I can see a church spire and the village only has one church) to compensate, and now I rarely walk far enough that I can not see my destination when setting off. It has been more of an issue when driving.

The longest it has lasted was several hours which as I was travelling by myself I had to wait out in a café. It is more frequent when in PEM, but I have not needed to attempt any driving during PEM for a good number of years. It was a practical issue when I still worked as I regularly would get lost on my commute home. This was before the days of SatNav and now I can just handover navigation to the SatNav.

When I was younger I had a very good sense of direction, generally being aware of the main compass points without any need to refer to a compass. I am not sure when I lost my sense of direction, only becoming aware that I had when for the first time I travelled to the Southern Hemisphere over ten years into my ME. My ‘jamais vu’ issues however arose within the first few years following the onset of my ME, so I don’t know this has any connection or not with my loss of a sense of direction.

[added - since my ME has deteriorated, it sometimes happens within my house. For example I suddenly find I don’t know the way from the bedroom to the bathroom, but is not a problem as the rooms are next to each other and there are only four doors on the landing to check.]

 

Ah, @Peter Trewhitt yes I had this exactly. When I lived in a city, there were times I would get confused in the small area outside my university. Places I had been for years. I had a terrible time consistently mapping out the city in my head. Yes to the sense of direction as well. It can be intimidating when you're in a new place. I could easily get lost badly, but luckily adrenaline and reasoning tend to get me out of most situations. Adrenaline is my best emergency fix for most me/cfs symptoms.

It drove me crazy and I think people thought I must be, well, on a lot of things. It was definitely worse when I was more active however. Or maybe I'm just in a smaller world now so it's easier and I keep things simple. I believe I had this immediately or at least by the end of the first year.

I wonder if it can translate to things learned visually as well, as some internal mapping of a concept. Suddenly it's just like, I have no idea how this works.

 

Hypopnea, shallow breathing, and loss of unconscious breathing. Really horrible sensation when you don't know how to breath.

 

Loss of facial recognition. I dreaded meeting anyone a knew as I wouldn't have a clue who they were.

 

I do have problems locating and accessing stored information in an IT system. For example I really struggle to navigate this forum once what I am looking for is no longer near the top of the most recent lists. This however is a more recent issue, only associated with my recent relapse over the last five or six years.

 

This is called prospagnosia and has most commonly been reported in the neuropsychology literature in relation to acquired brain injury such as stroke or head injury. It has been generally assumed that there is a specific part of the visual cortex that processed human faces.

When I was a student forty years ago the unanswered question was ‘was it confined to just faces or if there were related problems distinguishing between individual examples within any category’ for example could people with prosopagnosia distinguish between their own Mercedes and someone else’s Mercedes car or distinguish between their own Labrador dog and the Labrador from down the street.

Another very specific cognitive issue I have developed more recently is problems selecting the correct preposition when writing. I have no problems understanding prepositions when reading, so, as long as I read things back, I usually spot my mistakes, but may have to write a number of alternatives before I am able to pick out the correct one.

With my cognitive issues, other than loss of my sense of direction, they tend to be variable rather than permanently present at a similar degree. The examples reported in the neuropsychology literature are generally, though not always, more fixed and are assumed to result from focal brain damage, however I wonder if a different hypothetical mechanism might be required to explain their occurrence in ME where specific localised processing is for some reason more vulnerable to a whole brain phenomenon such as reduced blood pressure.

 

Yes. One of the reasons I rarely wander off on my own.

One of the main reasons I thought I was losing my mind when I first became ill.

I moved to the UK before SatNav was a thing and, with just an AA road atlas to hand, was despatched to customer sites all over the bottom half of the UK, not Kent or Essex so much as we had someone who lived there.

So I went from someone who could find my way around virtually anywhere to getting lost within a mile of home. I'd lark up and have a think, nope. So I'd be left driving around the area until something finally clicked.

I don't drive very often or unsupervised these days but even if I did I simply couldn't afford to take such an unknown risk with my resources. It's one thing pacing to go out for an hour but if you had to expend another half hour on top of that driving up and down looking for home...

 

Park up??

 

Time for a nap, I think!

 

Have you progressed this with a Formal medical diagnosis? My wife with ME has this problem even to not knowing which room in our house is above her location let alone forming a journey path. I did try to use this disorientation to get her mobility PIP. Our friendly DWP did not like the idea despite disorientation being listed as part of ME and one of their criteria. I suspect due to not having any objective test? Anyway they granted mobility for her knees and spondylitis totally ignoring the ME impact which is much more intrusive QOL wise.

 

No, I don't have a separate diagnosis, it's just part of ME.

I had a lot of problems with the DWP. For the first year or so they wouldn't even let me apply for Incapacity Benefit, now ESA. I did have a go at applying for PIP when it was still DLA and was turned down. I strongly suspect I gave the right information but if you don't phrase it in the right way.

Anyway, with ESA you are asked about planning a journey and I say no, I can't because if I tried to in a regular basis I would be unable to, though I might be able to do it as an occasional one off.

i also list put this under the section in ESA about how the condition affects you psychologically.

 

We in the uk have all fallen foul of the DWPs perverse thinking. Your story is a mix of my experience and my wife’s. I do think the plan a journey and being out unaccompanied safely reliably was part of the pip mobility score. The Dwp phoned her a few days prior to tribunal and really did not want a hearing on disorientation grounds and suggested would she accept the knees and spondylitis as reason to grant her mobility? We were so so tempted to go to hearing, but with no medical evidence and stress we agreed. Hence my interest in if you had anything formal. I am not sure how or what tests could be done as proof or otherwise showing disorientation. Really it’s a strange point scoring criteria. As we see above we are all different slightly, but often similar, sometimes.

While she is ‘defective’ with planning or spacial awareness her arithmetic and spelling capabilities exceed most people despite very little lifetime reading on her part. A total compliment of what I have experienced with this illness especially with pem as expected.

 

I think this started when I was a teenager, several years before I got ME, but when I would move from a dark environment to bright one, or vice versa, my vision would sort of strobe in brightness as though I was rapidly blinking. It would last for maybe 15 seconds.

I assumed this was just normal "accommodation" to different light levels, but I never noticed it as a younger child.

After the onset of ME, this became a lot more pronounced. I remember stepping outside into broad daylight once and this flickering did not last just 15 seconds, it lasted more than half an hour - and then gradually diminished. I don't think it was a migraine of any kind. It wasn't painful and it was too obviously tied to changing light levels.

The other weird thing I would get soon after onset was a rapid, pounding heart apparently triggered within minutes of eating carbohydrates. It seemed impossible that what I had eaten had even had time to get out of my stomach, let alone cause some kind of hypoglycemia induced adrenalin rush. It's just a guess, but it seems like my system was overreacting - virtually releasing insulin in anticipation of a rise in glucose and then just as rapidly releasing adrenalin in anticipation of hypoglycemia - the adrenalin leading to a rapid heart rate.

I've had 3 or 4 glucose tolerance tests over the years - all normal, even though I got modest symptoms during the tests. It was speculated that the swings were happening so quickly that the tests were "missing" the excursions from normal - either that or something other than glucose levels were triggering the pounding heart.

Sometimes I wonder if ME might not somehow exploit pre-existing weaknesses that your body has learned to deal with and that it somehow strips those adaptations away.

 

Every now and then the sheets on my side of the bed turn blue. Bottom sheet worse than top sheet and it's roughly in the shape of my body.

Looking online the closest I can find is bacteria on the skin causing this.

 

i am very sorry as i cannot read the thread for health reasons but i did read the op. also becasue i am goung to be pedantic. none of this is criticism at all. all of it is my expressing confusion.

i am going from the thread title. i acknoelwge that titles are limiting.

the thread title states "What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.".

i am not sure what this is driving at. perhaps something not represented in the medical system, or known by the scientists and physicians who should know the disease? or stuff that is dismissed or you can't get them across?

i literally don't know what constitutes a symptom of m.e. i kow the different criteria. and i know there is stuff i grey literature. but there is SO much stuff that shows up on these forums that i don't know if it's m.e. related.

papers for a long time listed about 6 symptoms "and the like" and just sort of made it up as they went along. iom had just a few. but now it is ok to say you have 80+ symptoms when youhy ve that sars-cov-2 long term thing. so maybe it will be ok to say it about m.e.

cluster analyses make up stuff too. do they make any sense? idk. send out more questionnaires that severe cannot answer because they literwally callnot complete the questionnarire or you do not know the subjects exist.

imio it's a really biug and complex disease that isn't understood well. and although we get a gestalt sense of what is and isn't an m.e. symtpom, can we be sure of this? i am really confused.

a lot of women seem to have hashimoto's. is this disproportionate? or does that have a high base rate?

what about stuff that is sometimes alleged to be the result of poor health? like low t in men or low d because of no sun or low d because of some poor health something or other. is that a sign of m.e.? ok that's a NORMAL question.

i know you said symptom not sign but a lot have low igg 1 and 3. is this correlated? what about cytokines? some have really high il-6 and il-8 [raises hand] or other inflammatory cytokines/whatever -- and others low.

a lot of diversity. what are whitney's symptoms if htat is public? is it a long list? a lot have only a few symptoms.

i don't want to make everybody groan like i just told a particularly bad pun. i really mean it. what constitutes a symptom of m.e.? is it "whatever occurs in a crash"? ahahaha. practically everybody has a different definition of crash and pem and pene. what can cause them [insults to the system vs. exertion]. etc. srsly. th3ere are those who say a crash and pene/pem are completely different. but mepedia says they are the same. and this kind of lack of agreement goes on forever.

but practically everybody is confident that everybody agrees.

i believe my worsenings are sleep-mediatre dto a large extent. but others probably do not notice that. diberse.

i have delayed/reversed phase circadian cycle. ccc mentions it. ok. so htat's a symptom of m.e. maybe.
reversed was so unknown that it got only one sentence in an enormous top university medical bookstore.

but i have a naurological issue that seems to run in the family. if i didn't have m.e. would i have it?

what about my autism-like stuff? and then there are pesticides and mold and so on. what about prosopagnosia?

ok, you're a wiz and you answered all of those clearly. then what about my life-threatening angioedema that i have NEVER found anywhere on the internet or on uptodate, that is nevertheless clearly angioedema, has normal c1inh, and it is caused by a certain class of extremely common chemical. in extremly tiny amounts, kind of like poison ivy but not local to the contact. is that because i have m.e.? unrelated? or is it merely not a symptom OF m.e.?

if that is unrelated, then why do i have a REALLY large number of unrelated symptoms?

are you going to dismiss me? nobody knows upstream downstream? we're talking about NORMAL pwme? well i do exist and my case does ask and maybe even answer questions. and i can't really answer what an m.e. symptoms is.

at some point it just becpome statistically improbable that you get all these diseases with no reason.

is m.e. just one of my diseases? are my diseases exaples of m.e. symptoms? which is it? something causes m.e. and some of the others? if we don't know hte answers to these to reasonably confidence yet then can we really know what is an m.e. ymptom?

is it all of hte above? but if you stub your toe that's not really a symptom of m.e. except maybe indirectly by bad proprioception or something. so there's an answer there somewhere for some things.

ok you want an answer. i will try. practically none of my symtpoms asa percentage are in my medical file. i can't relate them all and they won't all be written down accurately.

i DO have a diagnostic story, which is idr 60pp. and doctors get confused by it and frustrated and don't know what to make of it. they say it is too long. but it is a TERSE story. idk if anybody has read it. i do not know what doctors want that is possible to focus on.

i have or have had so many symptoms i literally cannot remember them. doctors must think this is insane. but it is true. my body does not comply iwth whatever doctsr must think is insane or what is convenient for anybody to think about.

i did not choose to be sick for my entire life more than half a century. and nobody chooses that. and i did not choose to be mostly bedrudden and housebound for more than half my life.

you could say nobody knows the answers to your questions. i know that. but if you don't know hte answer to the questions then why are there 4 pages of answers to the topic? again. confused.

again nothing is a criticism of the queetion or anyting or anybody just an expressio of confusion.