what has been your most bizarre symptom/symptoms?

soxfan

Senior Member
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North Carolina
I am not sure it is bizarre but my symptom that bothers me alot is burning eyes. It feels as though someone is aiming a blow torch into my eyes. I will have this for days on end then it will disappear for months.....sometimes they will feel on fire and then the next hour it goes away but then abruptly return.....

I can tell u it is not dry eyes...or allergies. I have been intensively tested for both. Plus artificial tears do nothing..I am in the midst of a week of very painful eyes at the moment.
 

trails

Senior Member
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114
Location
New Hampshire
I am not sure it is bizarre but my symptom that bothers me alot is burning eyes. It feels as though someone is aiming a blow torch into my eyes. I will have this for days on end then it will disappear for months.....sometimes they will feel on fire and then the next hour it goes away but then abruptly return.....

I have the same symptom and it is extremely annoying. For me it seems to go hand-in-hand with overwhelming fatigue. Unfortunately, although it can go away for hours at a time, I still suffer from it about 4-5 days a week. Like you, mine is not related to allergies or dry eye.
 

lansbergen

Senior Member
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2,512
The most concerning to me was the lightning strike pain. Sudden jolts of pain, striking somewhere like a bolt of lightning, gone almost as quick but AGONIZINGLY PAINFUL.

Do you mean the shooting pain that feels like an electric current goes from A to B?
 

Tammy

Senior Member
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2,236
Location
New Mexico
Imaginary smells! Not a particularly unpleasant experience. Rather the opposite actually. Usually a Yankee Candle Christmas Cookie smell. Once a cotton candy smell. Several times a refreshing, clean soapy smell. :)
I've had that too................all good smells fortunately!
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
A bizarre ME symptom would be auditory/olfactory hallucinations from partial seizures (also seen in Lyme and many other diseases and non diseases).

Waking the whole household because you smell burning, can 'taste' blood, or can 'hear' the anchor on Fox News continuously in your head after the TV is off is always challenging.

In terms of diagnosis, a QEEG shows up weird brain waves in ME, but few hospitals run this and prefer EEG's which just tend to show you're sleepy. (Still not normal obviously).
 

PennyIA

Senior Member
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Location
Iowa
Do you mean the shooting pain that feels like an electric current goes from A to B?

Exactly - feels like it's shooting from one place to another, intense sharp, quick, and then gone.

As far as I can tell - that is NOT normal and when you get it all over or in the brain? I can't imagine it not being a sign of something wrong with your nerves.
 

Forbin

Senior Member
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966
I had the constant low level "buzzing" sensation for the first several years of the illness. Initially, my doctor thought it was low blood sugar, since that can make you shakey, but I really had no evidence of hypoglycemia on either of two glucose tolerance tests.

If I had to bet, I would guess this "buzzing/shakiness" is caused the chronically activated immune system "stuck in high gear" that the Hornig/Lipkin plasma cytokine study showed.

I've noticed that this feeling can also be present during the initial phase of coming down with a bad case of the flu. It sort of seems like it is a precursor to developing "chills." Administered interferon can cause chills as a side effect, so there might be some connection there.
 
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Misfit Toy

Senior Member
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USA
I've had so many but the worst was in the beginning. I had Epstein Barr virus and I was absolutely feeling mental and physically sick.

I remember the sweating, feeling of panic and wherever I was, I would become dizzy and feel faint. I was only 18 and had no idea what was happening.

Sounds were driving me nuts, smells, the sound of air conditioning was making me crazy.

I stopped sleeping completely.

I was told that I had EBV. My adrenaline came back sky high. I was diagnosed with "Chronic Epstein Barr Virus" and I was taken seriously.

But....I felt nuts and I had no idea what an adrenal gland was...I was too young. No internet in 1989.

So, I believed I was nuts and that if I could just get my act together, I would get well.

At the age of 18, I put myself in a mental hospital thinking it would cure me. It didn't. I was so young, so scared and could not face the thought that I had a virus that may mess me up permanently, as my doctor had told my mom. : (

2015--here I am. Not there anymore. Not feeling out of my mind, but this illness effects my brain and to me that is the most bizarre thing...anything effecting my brain.

And then there is my horrible chemical sensitivity....I could go on forever.

A rash covering me from head to toe in 1993.

Reflux and GERD-hospitalized for a month because of it in 1990...came on out of nowhere.

IC-sleeping in the tub in 2001 because I couldn't stop urinating.

CFS-clusterf$&k syndrome!
 
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lansbergen

Senior Member
Messages
2,512
Exactly - feels like it's shooting from one place to another, intense sharp, quick, and then gone.

As far as I can tell - that is NOT normal and when you get it all over or in the brain? I can't imagine it not being a sign of something wrong with your nerves.

In my case it is related to flares. The worse the flare the more and intense it happened. Nowadays it only happens in
superficially tissue. I am glad it gradually disappeared from the deep tissues.
 

soxfan

Senior Member
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995
Location
North Carolina
@trails...I wouldn't be able to tolerate this every week. Sometimes I can go 6 months without it. Someone once told me it is caused by the body pumping adrenaline instead of cortisol because I have adrenal problems...have for years.

I am in the middle of a bad crash which has left me basically horizontal so I thought that was the cause but when the eyes burn it is not always during a crash period...

Sometimes I feel like I need pain medication they hurt so badly.
 

alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
I suspect most of us could write on this thread all day without repeating ourselves ... except when we forgot what we wrote. I have some of these, especially the dry burning eyes.

However I want to focus on the really weird ones here.

On the theme of smells, I could smell paint as a child. Dry paint. This was in the days of oil based paints. I could smell them. I could also smell it on anything that had been in contact with painted surfaces. Everyone thought this was bizarre. Since everyone moved to water paints this problem went away.

But the one that takes the prize is the day I started feeling really weird, something like severe vertigo. I turned this way and that. Somehow I turned one particular direction fast enough that I felt something different. I started spinning in place, I think sitting on the floor, like a top, and it kept the vertigo under control. Then I got exhausted and had to stop. Back came the vertigo. I think I had some kind of inner ear problem.

The next big one was when I had a flu. Then oral thrush as my immune system was down. Then I started hallucinating. Smelling colours, hearing smells, my senses all jumbled. I went to the hospital with that one and all they did was give me an antihistamine.

One that was interesting, weird at the time and a turning point, was I always (as an adult, not sure as a child) had dead pale hands. No colour. I was on immunocal for some months for my CFS, as a glutathione promoter. All of a sudden my hands went bright cherry red. I mean, I would have given Rudolf competition, they almost glowed. I had to see a doc anyway so I mentioned this. However by then my hands had a healthy pink look. I think I had sudden major vasodilation in my hands. Anyway, since that day some fifteen years ago my hands have always looked normal, no longer pale.

(PS As a side note I was studying biochem at the time, and my hands were so red I thought a red pen had leaked in my backpack and gotten all over my hands at first. I even searched the backpack for the mythical leaking pen.)
 

Apple

Senior Member
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Location
UK
The most concerning to me was the lightning strike pain. Sudden jolts of pain, striking somewhere like a bolt of lightning, gone almost as quick but AGONIZINGLY PAINFUL.
.

I get this too. It's excruciating. Although never in my brain/head thankfully. Along with feeling as if someone is randomly hitting my joints with a hammer. Super.:thumbsup:


All of a sudden my hands went bright cherry red. I mean, I would have given Rudolf competition, they almost glowed. I had to see a doc anyway so I mentioned this. However by then my hands had a healthy pink look. I think I had sudden major vasodilation in my hands. Anyway, since that day some fifteen years ago my hands have always looked normal, no longer pale.

Did they look like this by any chance?
http://i58.tinypic.com/hvo1ef.jpg
That's another weird and wonderful symptom I get in my hands and feet.
 

alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
@Apple, yes but even brighter. It was most bright on the palms though.

PS I also have brown feet. Its not a tan. Its just my feet. I am told its probably myriad small blood vessels that have broken. I am still not sure what it is, and no doc has a clue.
 

Valentijn

Senior Member
Messages
15,786
One that bothered me the most was that one side had less temperature sensing abilities. Doesn't seem that serious. But be standing outside with a mild cool breeze and to be able to feel it on half the face but not the other half??? drove me over the bend, it completely throws your whole focus on the breeze and with fuzzy brain and all just drove me batty.
I had something similar, but it was all sensation that was dulled one the right side of my body for three weeks. Eventually it was diagnosed as a complicated hemiplegic migraine. Reflexes were also dulled on that side, when the GP tested them. MRI, MRA, and bubble echocardiogram were normal. Homocysteine was raised, so the neurologist had me take folic acid, and I went back to normal about half an hour later, getting some rather intense vertigo for a few minutes in the process.
 

Valentijn

Senior Member
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15,786
Also now when I am close to PEM my brain sends a signal for movement and my body won't react. It can take up to 15 minutes to be able to stand up. (Just thinking that maybe this is more common than I thought?)
Is every muscle non-responsive then, or just ones needed to stand up? Can you still move your arms or head, etc? I had one thigh muscle completely stop responding, after a very long walk through an airport and way too much standing. It become responsive again after about an hour.
 

Effi

Senior Member
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1,496
Location
Europe
@Valentijn it's my entire body. My brain keeps sending signals (stand up, pick up that pen) but nothing happens. And then I keep saying to myself: this isn't possible! What if I try harder? But that doesn't work either. Then after a couple of minutes it does work. I always wonder if that is the state a paralized person is in all the time...
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@ Alex...the burning I have in my eyes is not from dryness..I have been tested many times for this. As I said before they could be on fire for an hour and then suddenly it goes away. They could be burning all day and then it suddenly stops. To me this is bizarre when not one doctor has been able to figure out the cause..

I do have other bizarre symptoms but wrote about the eyes because I am going through the burning episodes now...
 

Kenjie

Senior Member
Messages
208
Location
New Zealand
Pulsing/vibrating sensation right side of brain... Sometimes it is just noticeable and other times its like a crook head and/or can develop into migraine/headaches which make me I'll for a few days at a time
 

Little Bluestem

All Good Things Must Come to an End
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4,930
I cause the occasional light to go out temporarily. A few will come back on if I walk back past them while they are still out. In years past, I would read about other people doing this, but I haven't seen anything in several years.
 
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