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

DokaGirl said:
@Mij thanks for mentioning these. My OI is really bad the past few months. Just this one cluster of symptoms is terrible, let alone all the others. Very, very mild activity brings on my OI. It always has, but it's more problematic lately.
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Have you tried taking in a little more salt?

Salty tricks and tips for dysautonomia:
-drink a mug of warm bouillon in the morning out of a coffee mug -add soy sauce or tamari to everything!
-keep a can of V-8 in your purse or book bag
-try drinking pickle juice, olive juice or doing straight up soy sauce or tamari shots
-high salt diets cause the body to excrete more calcium, so making sure you have enough calcium and potassium intake will help keep your bones strong
-over time you won’t have to measure your salt intake, you will learn to increase or decrease salt intake based on how you are feeling.

I like adding sea veggies to my slow cooker when I make chicken soup. I feel wonderful and can stay upright for longer periods of time.
 
Mij said:
Have you tried taking in a little more salt?

Salty tricks and tips for dysautonomia:
-drink a mug of warm bouillon in the morning out of a coffee mug -add soy sauce or tamari to everything!
-keep a can of V-8 in your purse or book bag
-try drinking pickle juice, olive juice or doing straight up soy sauce or tamari shots
-high salt diets cause the body to excrete more calcium, so making sure you have enough calcium and potassium intake will help keep your bones strong
-over time you won’t have to measure your salt intake, you will learn to increase or decrease salt intake based on how you are feeling.

I like adding sea veggies to my slow cooker when I make chicken soup. I feel wonderful and can stay upright for longer periods of time.
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Thank you very much @Mij

I have tried salt, and lots of hydration. I seem sensitive to salt, in that I retain fluid after a salty meal. This fluid retention may or may not help me with my OI. It seems to vary. Your ideas sound very good.

I know ME experts recommend salt and keeping hydrated. There is of course the issue of being watchful re BP.

Thanks again.
 
My records don't say anything I think. I lost trust in the system, went to a private doctor and never discuss my ME with my GP anymore. They have no idea what it is.

When I go there for other minor problems, I now always say (with a bit more confidence than earlier) that I, of course, have ME/CFS, which is a chronic illness with exertion malaise, it affects everything in my body and life etc. That I always think everything is ME/CFS related, but that I want to have this (minor) thing looked at, in case it is something else.
I see them looking at my file, finding nothing, never any real reaction.. The last time the young GP asked if I was looking into that, I said that I was being treated privately and we never spoke of it again. The lack of curiosity is amazing...

As for weird symptoms, I haven't had real PEM for a while now, so I start forgetting, but a lot of thing are mentioned in this topic: blue lips, hoarse voice or no voice at all, lots of swelling of my whole face in the morning (I have managed to make a beautiful photo of that one time it was particularly bad, I use it to let people see what PEM is, I look like I have been stung by a bee in the photo :D). I think the rest of my PEM symptoms are described in the ICC: the flu like chills, the peeing every ten minutes etc.
 
It would have been useful in the past for my medical records to include that when I have an infection my body temperature can drop and stay there for a while.

Through all the decades of sinus infections GPs' usually take my temperature and then comment that I can't have an infection as my body temp is so low (last time in the Celsius 35's for days).

When I was eventually seen by the ENT Consultant the infection was happily eating through the sinus area and badly swollen.
 
Thank you for making this topic @Andy . It’s something I’ve been thinking about lately.

I’m not sure which of these might be mentioned in litterature, but it's symptoms medical professionals seem very puzzled by when I mention I have them, so they seem to be less talked about symptoms I think.

. sore throat

. hoarse voice when i’ve overdone it (I wonder if it is because the muscles in my voice get fatigued)

. feeling like i dont have the energy or strenght to breathe properly

. constantly feeling thirsty and dehydrated, drinking doesnt help.

. Inability to fall asleep the days I've overdone it. As if my body is electric.

. delayed sleep pattern when I have PEM, where my sleep is pushed back a few hours every night.

. constant pressure in my head

. feeling hypoglycemic, feeling extremely weak if i havent eaten in the last few hours, often shaking (I've measured my blood sugar when I feel like this and it is within a normal range)

. shaking when ive overdone it (from muscle weakness or adrenaline maybe?)

. dropping things out of my hands all the time

. Clumsiness, crashing into things

. problems with depth perception, or not being able to effectively tell distance, thinking something will hit me even though it's far away from me, or misplacing things, spilling things etc

. eyes not being able to focus properly. i have been to eye doctor and my vision was very good, so they said ME probably was the best explanation for my vision problems.

. being very easily startled

. my heart beating very hard and very slow sometimes when I have PEM. it feels like even my heart is too tired sometimes

. Not being able to nod or shake my head quickly, or turn my head quickly because it makes me very dizzy
 
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No body stretching and at least reduced yawning. Sense of smell changing over the course of years. With some odours being totally undetected while others being very apparent. at present the smell of mice in the garage for example. Normal bleach is impossibly strong but there is another formulation which is undetectable. Sorry but I cannot recall the different peroxide Or hydroxide variations... Waitrose bleach is the better of course. Professor Findlay nhs uk did some research in the 1990s but found no link to Cfs
 
Most of my ME symptoms are not recognised on my health file. One professional described my ME as a performance others described it as a delusion.

The main problem I have with research and books is that they rarely mention long term and permanent harm from exercise. My main symptoms are a low threshold for injury, delayed and incomplete healing, and long term or permanently lowered injury threshold after exertion (even when the pain is masked by painkillers). The pain I experience accumulates the more I push beyond my injury threshold.

Most research papers define ME as fatigue rather than an adverse reaction to exercise which makes me feel unrepresented, does anyone else feel the same?
 
There is little to no detail about ME in my records beyond noting I have been diagnosed with ME/CFS. Actually it might say CFS/ME. Whatever.

There are consultant letters that contain a lot of information on file in my records but nothing in the records themselves.

I don't really discuss ME with my GP though. The last time it was mentioned I told him that while I can briefly pass for normal, like at the 10 min appointment, I can't keep it up for long. That while he normally sees patients when they're sick, he'll only ever see me when I'm well enough to go see him. That I have to rest up for days before and after.
 
I don’t think there’s any detail at all on there from GP interaction. Other than fatigue........ there is a report from my consultation with private ME specialist with some details. Even after the GP received that I didn’t have any discussion with them about ME......
 
I do not believe my physician records anything beyond ‘fatigue’. I would be afraid of what i’d find out if i requested copies.

There are a few things i hav enever mentioned to her: the tingling and vibrating in my feet. It is pretty much constant but more pronounced in the evening. The tinnitus. Worse if i over do. She probably cannot understand PEM. i had to make her do a poor man tilt test for her to understand what POTS is. Thankfully the test was positive. Even the concept of orthostatic intolerance was difficult for her to grasp in the beginning.

i have long learned that the more symptoms i mention, the more i am believed to be hypochondriac.
 
Milo said:
i have long learned that the more symptoms i mention, the more i am believed to be hypochondriac.
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I totally agree. Doctors are actually trained to view people with list as hypochondriacs.

The only thing I repeat with every consult, is that I don't have fatigue, but ME/CFS and that exertion is the problem. I hope that that might be such a simple concept that it will stick at one point.
 
There is zero documentation on my medical records that an immune modulator (Imunovir) triggered a MAJOR relapse in 2001 and changed the course of my illness permanently. The Virologist dismissed it as 'unusual'. and that all his pts felt 'less fatigued' from taking it.

Wouldn't that have been of some significance since he and Dr. Hyde did a small study in the late 90's with CFS patients?
 
Does anyone else get the sensation of sharp pins being slowly pushed through their fingernails?

I don't mean down along the length of the nail, I mean perpendicular to the nail and finger.

I'd forgotten all about it and today it's made a come back & is really annoying.

I can just imagine telling a doctor about that! :rolleyes:
 
Invisible Woman said:
Does anyone else get the sensation of sharp pins being slowly pushed through their fingernails?

I don't mean down along the length of the nail, I mean perpendicular to the nail and finger.

I'd forgotten all about it and today it's made a come back & is really annoying.

I can just imagine telling a doctor about that! :rolleyes:
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Not for me. That doesn’t sound pleasant.
 
To what extent does diarrhoea and/or other irritable-bowel-type symptoms affect your ME/CFS? Can you relate to the following experience:
“If I overexert, I crash. Usually for 3 to 4 days. Basically, a complete shutdown.
“Digestion, bladder, and bowels all close up shop and I sleep. As I come out of this, I then eat to satisfy hunger but, never anything heavy.
“Within half an hour I end up tied to the bathroom. Usually for most of the day. It feels like I lose muscle control and it all centres around my tummy and bowel.
“I get relentless uncontrolled muscle spasms and can’t stop evacuating my bladder and bowel. I then usually end up with haemorrhoids.
“I put it down to the system starting up again and it's something else "to put up with". I refer to it as ‘ME Tummy’.
“I am not keen to take antispasmodics regularly or peppermint because this is perhaps a regular 6 weekly cycle, with intermittent bouts if I happen to overexert more often.”
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The above is from a social media post from the MEA that I shared here, Gut dysbiosis in severe mental illness and chronic fatigue: a novel trans-diagnostic construct? A systematic review and meta-analysis;Safadi 2021

I have suffered with similar issues for years but it's only this week that it will start appearing on my medical record. I'm now talking to my GP about it because it's no longer (obviously) linked to overexertion; before as it only seemed to happen when I was crashed, I didn't talk to my GP about it because I gave up talking to them about what I labelled 'ME stuff'.
 
I hesitate to speak up. I'm never sure that a symptom I experience is strictly speaking due to ME/cfs. However I will throw this out there as it's something I've never seen written about.

I don't experience this to a great degree anymore but for about 18 months or so about a dozen or so years ago I experienced constant routine electrical discharge. I couldn't touch anything metal. This wasn't friction the way you get static from a carpet or rubbing your hair on a balloon. And it would often generate an arc of discernible light.
 
Snowdrop said:
I hesitate to speak up. I'm never sure that a symptom I experience is strictly speaking due to ME/cfs. However I will throw this out there as it's something I've never seen written about.

I don't experience this to a great degree anymore but for about 18 months or so about a dozen or so years ago I experienced constant routine electrical discharge. I couldn't touch anything metal. This wasn't friction the way you get static from a carpet or rubbing your hair on a balloon. And it would often generate an arc of discernible light.
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I think I have had this symptom since at least when I was working in London, when I used to deliberately shock myself with the metal switches that I used to operate the switchboard I worked on. (A masochistic tendency, now gone!) I also received quite nasty shocks from at least one public telephone sometimes. Since getting ME I have had it from time to time, shocking the poor cats sometimes! I'm not sure whether or not it's related to ME.
 
Snowdrop said:
I don't experience this to a great degree anymore but for about 18 months or so about a dozen or so years ago I experienced constant routine electrical discharge.
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I seem to have been a static magnet all my flipping life. I get really big shocks every time I touch metal if I'm insulated from the ground, and I can see the arc of light too. I used to break photocopiers before I learned how to discharge it before I touched them – at work, I used to wear a silver chain bracelet so I could touch it against an exposed copper water pipe nearby. They way, neither I nor the photocopier felt the shock.

I got some slippers with arch supports for Christmas that have pretty much sorted out my plantar fasciitis, but unfortunately they have rubber soles. I can't find the old bracelet, so instead hook a little padlock key on elastic around the belt loop of my jeans, which I use for touching taps, door handles, and the freezer. If I forget...zzzzz!
 
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