What weird, medically vague symptoms other than your fatigue do you have (pressure, vibrating, etc)

[Snow Leopard]

My eyelids and eye muscles hurt really bad. It wasn't always like this either, but has been bad for about a year.

 

[daisybell]

If I'm feeling particularly lousy, my eyebrows sweat.... Go figure!

 

[Forbin]

My eyelids and eye muscles hurt really bad. It wasn't always like this either, but has been bad for about a year.

I had something similar several years ago. You might want to get checked for conjunctivitis, especially if you wear contact lenses. There also seems to be a connection between psoriasis (an autoimmune disorder) and impairment of the glands that keep eyes moist. According to my ophthalmologist, that could increase one's chances of developing conjunctivitis, especially in people who wear contact lenses. http://www.ncbi.nlm.nih.gov/pubmed/8883550

I just had scalp psoriasis, but it might have been a factor, according to my doctor.

 

[Snow Leopard]

I had something similar several years ago. You might want to get checked for conjunctivitis, especially if you wear contact lenses. There also seems to be a connection between psoriasis (an autoimmune disorder) and impairment of the glands that keep eyes moist. According to my ophthalmologist, that could increase one's chances of developing conjunctivitis, especially in people who wear contact lenses. http://www.ncbi.nlm.nih.gov/pubmed/8883550

I don't wear glasses or contact lenses. I don't have any pain on the surface of my eyes. The pain is mostly behind the eyes and the eye lids. But I guess one of the possibilities may be a chronic sinus infection?

I've had no luck with my doctor when mentioning it...

 

[Forbin]

@Snow Leopard

Oh, well - just an idea...

I didn't have any pain or much redness on the surface of my eyes either, but I had extreme conjunctivitis on the inner surface of the eyelids (they looked like raw hamburger). The conjunctiva are both the outer surface (the white) of the eye and the inner surface of the eyelids. At one point, the pain was so bad that I could hardly sleep.

In my case, all this was caused by slight mechanical friction between my inner eye lids and my contact lenses due to dry eyes (which lead to a cascading local immune response called "GPC"). There are several other possible causes of conjunctivitis, however.

 

[rosie26]

I get a streaking pain-twinge in the same area in my left jaw bone which radiates up to my lip. I came to realize after a few years that when ever it happened it was one of the signs I had overdone it and I was beginning a deterioration. So I always listen to it and rest dramatically to avoid spiraling further. I also get neurological jolts and the odd stabbing pain, these have been getting worse over the last few years.

 

[PatJ]

I had two spots on my MRI, and whoever read the report said it was still normal.

If they are listed as "white matter lesions" then they can apparently be caused by contact sports/rough activities and migraines. I've got several white matter lesions in my brain. Some neurologists think they're "nothing" while others take them more seriously but don't know if they have any real significance.

 

[PatJ]

I used to get a feeling of "internal trembling." I felt like my insides were vibrating even though I had no external trembling or shakes. Eventually I discovered it was related to low blood sugar. Since I've been eating frequent, small meals at specific time intervals I no longer have this feeling.

Sometimes my gums will hurt. Almost like a deep toothache but this feeling spans multiple teeth. It can happen along one side (top or bottom) or across my entire gum line.

 

[roller]

the eyes. its not the worst or most handicapping thing, but perhaps the craziest.

i was diagnosed astigmatism. when picking up glasses made to prescription, they wouldnt fit anymore. i thought the guys were idiots, but in fact my eyes are just ever changing..
contact lenses felt like cutting my eye apart, the optician couldnt see anything wrong.
since early 20s i have been walking through a blurry world.
later, one eye was lasered.

anti-helminthics, antibiotics and h2o2 helped a lot, but still there are the monster floaters and other weird effects.

these medications change the colors i perceive, their intensity, and - the 3D vision. before i wouldnt have complained about any of this, as i thought its normal. but it makes a huge positive difference.

sometimes, mostly it is when waking up, vision is as if one eye is on the neck and the other on the forehead or so...
it may take hours until it normalizes somewhat.

 

[roller]

Sometimes my gums will hurt. Almost like a deep toothache but this feeling spans multiple teeth. It can happen along one side (top or bottom) or across my entire gum line.

i had this when starting doxycycline.
for me it wasnt the gum but the jaw bones.

 

[worldbackwards]

I used to get a feeling of "internal trembling." I felt like my insides were vibrating even though I had no external trembling or shakes. Eventually I discovered it was related to low blood sugar. Since I've been eating frequent, small meals at specific time intervals I no longer have this feeling.

Sometimes my gums will hurt. Almost like a deep toothache but this feeling spans multiple teeth. It can happen along one side (top or bottom) or across my entire gum line.

Oooh, I get all them as well. Not so much the vibrating any more, but I still get the teeth and gums.

It's like snap isn't it, but rubbish.

 

[Basilico]

I've always had low end of normal blood pressure, but in past few years, it often drops for no apparent reason and then I get dizzy/lightheaded/low energy. Also, I seem to not react to ANYTHING. No matter what medecine/drug/supplement I take, it's like sugar pills.

 

[roller]

Some things I have gotten:

Sensation of water running down my leg and/or heat as if leg next to radiator.

Eye twitching.

Pins and needles in palms.

Feeling of pain in my brain or as if I can sense my own brain if I try to think hard when I'm extremely fatigued/have PEM.

Weird pain in my back - very random & occasional sharp stabbing pains that completely immobilise me until they stop.

maybe you could try anti-helminths.

 

[Mesurfer]

-Ear canals feal full or swollen and sometime accompanied by a swoosh/crackle sound if I squint my eyes and flex?? my inner ear (my best description, it's hard to explain).
-Left and/or right lower back pain especially when PEM is bad (sometimes sharp, sometimes dull)
-white flashes in peripheral vision.
-eye floaters and shadows.

Most of these are always worse when experiencing PEM.

Anyone else have these fun symptoms?

 

[halcyon]

Anyone else have these fun symptoms?

All but the low back pain yes.

 

[Mesurfer]

@halcyon really!, you have the ear symptoms. Just curious, what does it feel like to you and how would you describe it?

 

[halcyon]

@halcyon really!, you have the ear symptoms. Just curious, what does it feel like to you and how would you describe it?

My ears feel very full too and are sometimes painful. The pressure will randomly equalize and cause crackling. I also have hyperacusis/tensor tympani syndrome and tinnitus.

 

[PatJ]

Anyone else have these fun symptoms?

I don't have low back pain but if PEM is very bad then I get a rod of pain that spans both shoulders. I used to get the feeling of ear fullness, as if my ear-drums were bulging outward. I've had variable tinnitus since 2012 in both ears. I have floaters, visual snow, and sometimes my vision strobes when looking at shadows. My vision can become severely blurry in one eye with severe PEM. I used to get double vision as well.

 

[worldbackwards]

OK, here's an odd one.

This is something that I haven't had in years, but has come back recently following a nasty crash.

I'm in bed at night. I wake up after about three hours with an idea in my head. Could be anything, could be related to something that I'm anxious about, could be about the price of bread. But the key thing is....
It isn't true, I basically know it isn't true (to the point that I can tell myself this), but I can't dislodge the idea and the train of thought that follows from it. It feels true, even though it isn't.

It is actually easily stopped, you get up watch TV for a few minutes if possible. For various reasons this isn't possible at the moment, so I've taken to forcing my brain through various feats of memory (mentally reciting records and song titles is a speciality) just to block out the offending thoughts until they've gone. Even then I can feel them trying to push back through.

I hate it when my brain does weird things. It's like living in a book by Oliver Sacks.

 

[u&iraok]

Curious about this since this condition tends to be associated with weird and sometimes unexplainable symptoms (ex: brain shocks, weird tingling, etc).

For me, they are:

Neurological (causes the most deficits): a PHYSICAL feeling as if parts of my brain are blocked, like a couple of arteries are closed or something. This is an actual PHYSICAL feeling. I also get a buzzing in different parts of my brain for a few seconds as if a cellphone on vibrate mode was put on the edge of my skull.

I also sometimes get a “brain shock” where the back part of my brain feels light-headed and then suddenly my head jerks and moves on it’s own. I believe this to be a form of a myoclonus.

Leading immunologists that I've talked to mention that these might be immune mediated responses in the brain that will be more widely recognised in the future as research in this field takes off (which it already has)

I got this shock effect, feels like a mild stroke, before I got ME/CFS, after I had flu shots and also an amalgam taken out (swallowed a piece of it). At the least, my flu shots started my decline which led to ME/CFS, starting with bronchitis two weeks after the first shot and problems on from there....

I got the buzzing effect and a weird feeling in my brain which I describe as how it feels when you chew on aluminum foil, but except in your brain, when I was having a major detox which included detoxing mercury and other metals. While I was detoxing I almost completely lost my short term memory and had poor cognition. This was a few months before I got the flu that triggered my CFS.