I am fairly new to this site. I will tell you that it is a little scary to see so many people with Lyme disease! I had been told that there are very few cases. And that it is very rare that a person dies from Lyme.
I have some of what I think are weird or unusual symptoms, but from what I have been told about the above, these symptoms may not be as abnormal as I think.
Could you please help me out and list some of what you think are your most unusual or strange symptoms?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet Dlee..
I would stay and chat but I am about give out now.. and since it is past midnight.. I will be doing the "pumkin thing" and heading off to bed.
But I wanted you to know that folks will respond later. Between the storms and Lyme Net being down for a while.. folks are not replying as much as usual.
I am not sure what my most weird symptom is.. unless it is the fact I now dress up like a tick and crawl through the idiot ducks offices and bite their legs every chance I get.
But there certainly are other weird ones, no doubt.
Instead of thinking or typing.. I am posting this site that explains some of the symptoms folks can get... in MY OWN words.
Maybe you will be able to relate to some of them and it will assure you that you aren't alone with this crazy disease.. and we care.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi dleemuse, I'm sure if you hang around a bit you'll find there are no strange symptoms here. For every bizarre thing you can mention a bunch of people will say, "me too!"
I can only think of 2 right this second. One weird and one funny.
I wake up some nights with the outside part of my ear bright red, burning hot and too sore to touch. The whole side of my head hurts and I can't lay back down for hours until it subsides. Beats me!
I've also become a bona fide memeber of the "Flinger's Club". Some times my left hand just flings stuff.
The first time it was trying to answer the cell phone in a restaurant and it ended up under someone else's table.
The next day I tried to squeeze a lemon into my iced tea. It flung into the air made a high arc and landed at the feet of a passing waiter. At which point the people sitting across the aisle from me said,"We saw that!"
If you'd like to join, "Flinger" membership is now open.
[This message has been edited by trueblue (edited 08 June 2005).]
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posted
Hey trueblue, I think I qualify for the Flinger's Club. We could even have our own Flinging Secret Hand Shake. Of course, it could get dangerous.
I have myoclonus, which is involuntary muscle jerking, that was caused by Lyme disease. It has caused me to fling objects and hit a few people. People are usually good natured about it.
My strangest symptom is that my myoclonus can be triggered by me looking intensely out of the corner of my eye. It sends me into massive jerks so I always have to be careful to turn my complete head to look at things and not turn my eyeballs.
posted
Hi all: I can relate so well to the earthquake bed thing and the tepid water down my leg. That is so weird I have the exact same thing. I would sometimes be outside and I would think it was raining but only on my leg or something because it would feel like a spinkle of water on me, but then I realized it was tingling and weird feeling, and it wasn't raining.
But the all out strangest symptom I ever had though was to do with my eye. It would swell and then go a bit wider than the other and then droopy a little, no one even really noticed, but I did and it really bugged me , it felt as though I was having a stroke , that was the worst one.
Good luck everyone
------------------ Thank you MrsSAM
Posts: 31 | From Canada | Registered: Mar 2005
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posted
Hi! Weird is normal! I don't like the explosions in your head.Sounds like a bomb is going off .Happens mostly when you are going to sleep.Once I heard a semi trailer horn,so real.Other noises as well. Flashing lights in eyes is another goodie.Really weird.
Just two of the many,take care,Sue.
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trueblue
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posted
Ah, that reminded me of being woken up by pots and pans clanging. It sounds like someone rummaging through the cabinets.
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trueblue
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posted
[QUOTE]Originally posted by Ms. Myoclonus: Hey trueblue, I think I qualify for the Flinger's Club. We could even have our own Flinging Secret Hand Shake. Of course, it could get dangerous.
I have myoclonus, which is involuntary muscle jerking, that was caused by Lyme disease. It has caused me to fling objects and hit a few people. People are usually good natured about it.
[QUOTE]Oh cool, further flingers! You're right, we may want to waive the hand shake. (Ok, the pun was irresistable, sorry.)
I once had one of those EMGs (or something) and only missed knocking out the tech by a inch or so. (She accused me of doing it on purpose. Then, I was sorry I missed.)
Posts: 3783 | From somewhere other than here | Registered: May 2005
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my als dx was based soley on a "slight abnormality" in emg, and my muscle twitches and cramping.
i begged for a lyme test. i spent the last 15 years w/ a home in the woods, operating a landscaping and tree bus.; born in the poconos; lived next in ocean city, MD for 15 yrs; and finally live on a farm in howard county, MD; visit my in-laws, at a Lake prop in Minnesota, and the neuro never tested me, in any way, even after i begged him! he did send me back out for an aids test though, because he heard of 1 case in NY, that showed some of my main symptoms, and wanted to "rule everything out". Did i mention he never tested me for lyme! I even told him i think i have lyme AGAIN, as i had it a few years before, & was treated for 30 days.
To me it sounds like a lot of people have a lot of my symptoms, but without the emg, or maybe yours showed as normal. please let me know about the emg....
Take care!
Posts: 94 | From Maryland, USA | Registered: Jan 2005
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posted
A lightning bolt in my head in my sleep, flashing lights and constant thoughts flickering. Two days earlier was constant headache which I have been grateful for that I never get unless it's monthly cycle - wasnt' near cycle time. Woke me up shaking on a Saturday night mid May, haven't felt the same since. Hands jerking (didn't make the flinger club yet)...Not recognizing family and friends or myself (that's the scariest) - pretending you are the same person you always are that with time, you hope you feel yourself again. I'm sure it goes on for many....
Good luck -
Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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posted
Jordan (14) has paper sensitivity. If he touches paper (or hears the sound) he gets goose bumps all over his body. His reaction is similar to what most people get when they hear fingernails on a blackboard.
He can touch coated paper like magazines. The degree of how this affects him correlates with how bad his headache is.
Another weird thing - Jordan has migrating itchiness all over his body. After a spinal tap, the itchiness goes away for awhile.
trueblue
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posted
quote:Originally posted by ALSLYME: trueblue, curious to what your emg showed?
my als dx was based soley on a "slight abnormality" in emg, and my muscle twitches and cramping.
To me it sounds like a lot of people have a lot of my symptoms, but without the emg, or maybe yours showed as normal. please let me know about the emg....
Take care!
My EMG/Nerve Conduction was done at my request within the last few years. I have a lot of nerve problems, especially on my left side. Worst in the leg, numbness and burning-tingling pain. (I have a lot of muscle twitching, spasms and shooting pains.)
The tested everywhere and told me all they found was mild carpal tunnel in my left wrist (I am right hand dominant.)
Sorry, I can't be of much help.
So ALSLYME are you being treated for lyme now? Hang in there.
I'm feeling guilty for the hijack of dlee's thread, I have to remember another weirdo symptom to put here. hmmm...let's see...
Last week the tops of my feet and backs of my hand hurt so bad, I couldn't have anything touch them and a giant bruise came up on the top of one foot. Please note: I did NOT fling anything that landed on my foot. (I couldn't tell if it was the bones, veins or muscles surrounding. It really freaked me out.)
I have another unexplained phenomenom, I woke up one morning a few weeks ago with my nose looking sunburnt. I hadn't been in the sun. I thought, "Oh great a giant pimple is on it's way". Nope, after 2 days it began to look like a bruise. After a month it's slightly faded. The doctor looked and said, "Hmmm."
On a related note, I often get a purplish spot that's a perfect circle (about the size of a quarter) under my right eye, when I'm run down and/or flaring. I'm guessing this is something along those lines.
dlee - thanks for making a place where we coould tell our strange stuff. Post a few of yours so I feel like less like a freak.
re-edited because the italic tags were backwards.
[This message has been edited by trueblue (edited 08 June 2005).]
Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
This is not the wierdest, but my brain isnt on yet this morning. However, it is disturbing nonetheless.
When you are sitting there with "regular" folks and you get one of those INTENSE migratory pains. I have been getting them in my jaw this past week. Then the jaw goes numb.
It is so very distracting and no one else knows it is going on and there you ae talking to youself in you head. "oh, crap,...is that what I think...oh no. Darn it, here it comes,...look normal, act casual....can they tell my jaw is throbbing? probably not. Why is my JAW doing this? Is this lyme or babesia? What are they saying? Man, this one is a dooozy. Now, body, calm down, there we go, release the pain. Oh crap, not the numbness....are they still talking?" ETC
Other strange ones are the lightening flashes that only I see and then say "hey, did you see that?" no one else ever does.
But here is a funny one. I ran out of the bathroom with my pants down the other night coz I heard some VERY LOUD paper crinkling. I asked my partner, WHAT are you DOING? she said, annoyed, working on my dissertation. I asked about the loud paper crinking thing and she looked at me both worried and sad.
Oh dear, have the auditory hallucinations started now? We talked for a bit, I described how it sounded like full newspapers were being CRUNCHED with bare hands. Then decided that I must have been hearing things.
At the end of the night she went in the back room to close things down and found that the printer had been misfiring and crinkled up a bunch of papers! PHEW my sanity was temporarily restored. We laughed for a long time together and felt so much better afterwards.
Trails
Posts: 196 | From Mesilla, NM USA | Registered: May 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Some reading
Newbies List 06/08/05
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
posted
Trueblue: Thank you for the endorphin flow this morning. I'm sorry I'm sure it is not so funny to you but you cracked me up with your "flingers club". LOL
I have two weird things. One is that when I'm cold and I get into the shower, the warm water running over me feels like scalding hot water. The second is that most of my aches and pains happens on the R side of my body only.
posted
For the last few months I get this strange feeling in a patch of skin on my right lower leg. It feels like there is an abrasion or rug rash there but there is nothing. It has fooled me on more than one occasion checking to see if there is an abrasion there. I guess this might be what some people are calling burning skin.
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trueblue
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quote:Originally posted by NUTBOBUTT: Trueblue: Thank you for the endorphin flow this morning. I'm sorry I'm sure it is not so funny to you but you cracked me up with your "flingers club". LOL
No, no it's very funny. I have a friend who is also a flinger (she's actually better at it) it's a running joke.
The first time it happened was on my first IV. The rocephin made me nauseous and eating during it helped. I'd hook up the infusion and make something to eat. The hand can-opener helped me fling a can of tuna across the kitchen.
That first treatment was enormously entertaining between the daily "worst thing to drop contest" and the "laying perfectly still on the couch, migrating visible twitch show".
It wasn't until years later that I met my first fellow flingers. Hah, it's still funny.
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Aniek
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posted
Since I've probably had Lyme since I was 12, it's hard to sometimes recognize symptoms. I have this little fear that the weirdest symptom is that Lyme changed my personality and one of these days I'll become a completely different person
The weirdest is probably this feeling I sometimes get deep inside that I just need to move. It is sometimes accompanied by myoclonus, but sometimes I just need to move. I had a HIDA scan of my gall bladder yesterday, and I came so close to just pushing myself out of the machine so I could move my legs.
It's sometimes accompanied by a weird feeling, that isn't quite pain, deep inside a joint. I get this mostly in my left ankle. It's almost a tickle. I think if I crack my ankle (which I always shock doctors and physical therapists when I do) the feeling will go away. But it usually doesn't.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Hmmm, most of my symptoms are strange to the outside world but normal for us Lymies.
Highlights of strangeness include the weekend when it felt like my blood was vibrating inside my body, the vibrations became so intense I could not think, talk or move. While it was happening I got slight relief by hanging upside down with my feet over the top or the sofa and my head hanging dowm toward the floor.
Early in my Lyme adventure I had temperature problems. I would be in bed absolutely freezing, I would turn on the other side and immediately be hot & sweating. Since then I sleep flat on my back!
I get tingling sensations in my back. The tingling goes round and round in circles. Usually it feels like it is on the surface of the skin. One night it got much more intense, felt like tingling and vibrating at the same time at circled faster and faster going deeper and deeper like it was drilling into my back. It felt like some vibrating creature was digging a hole in my back except it didn't hurt. I kept touching my back to be sure there was really nothing there.
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I get high ear pressure. I can predict when it is going to storm. My other obnoxious symptom is myoclonus seizures.
Posts: 8878 | From Illinois | Registered: Aug 2004
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posted
Hi, and thanks...you guys are too funny (well at least some of you). And it is nice to laugh!!
My weird symptoms don't seem that bad now that you all have listed yours, really, thanks for the help.
I have several problems at night. I have what I call tongue spasms. My tongue can go up and down...like a chewing motion anywhere from several seconds to all night long. Sometimes I wake up cuz I've bitten my tongue.
I also have what I call hand waving and foot flexing at night. The other night I woke up hitting myself in the mouth because of the hand waving.
The worst part is...it is hard to sleep while biting your tongue or hitting yourself in the mouth all night.
Anybody else with these problems?
What is ``myoclonus''?
Again, it has been a long time since I have laughed this disease I the face! Thanks!
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I find it weird, unusual and abnormal that I am not able to take a shower each morning as I did for years before lyme.
And when I do take the shower or bath, I need to rest before toweling off and then again before getting dressed at times.
I find that weird, unusual and abnormal.
I look forward to taking a shower or bath daily again in the near future.
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Aniek
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Myoclonus is uncontrollable movement. A detailed description is below.
This is from myoclonus.com
WHAT IS MYOCLONUS?
Myoclonus describes both a symptom and a disease. The disease myoclonus ("myo") muscle ("clonus") jerk, describes a brief, sudden, singular, shock-like muscle contraction that refers to a condition characterized by myoclonus. Myoclonus arises from damage to the central nervous system, which comprises the brain and spinal cord. Myoclonus is activated by an electrical discharge originating in the central nervous system, which is transmitted through peripheral nerves to produce the sudden muscle contractions.
Myoclonic jerks can cause disability by interrupting normal posture or movement. Recurrent or severe myoclonic jerking is characterized by frequent forceful uncontrollable muscle contractions of any body part, or the entire body, making independent motor function impossible. Patients severely afflicted with myoclonus may be unable to stand or ambulate, reach or grasp objects, feed or dress themselves, speak, or even direct their gaze because of the involuntary muscle jerking interfering with all of these functions. Myoclonus is often triggered by movement. Patients may manifest no myoclonus at rest or when asleep, yet may experience uncontrolled jerking when attempting to move. The brief positive muscle contractions of myoclonus are often accompanied with sudden, unexpected inhibitions of muscle contraction, or lapses of posture. This phenomenon, termed negative myoclonus, makes standing, walking, reaching, or grasping objects very difficult.
The diagnostic approach to a patient with myoclonus has a dual objective; identifying the site of origin of the myoclonus within the nervous system, and establishing the cause. Clinicians are able to categorize myoclonus on the basis of its distribution over the body, its electrophysiological characteristics, and its etiology. Electrical recording techniques can often localize the source of myoclonus to the surface of the brain, deep brain structures, or the spinal cord.
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posted
Without a doubt, as with Stella, it is the vibrations. I have them in the face & neck, so getting to sleep at night with my face rumbling away is tough. I also have occasional jerks but are very mild.
B
Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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posted
My weirdest was taste hallucinations - this was during the worst of my herxes.
I was eating soup and it suddenly tasted absolutely salty, continued like that for about 5 minutes, then went back to normal.
During that same period I had sound sensitivity so bad that when a friend of mine put his hand on my shoulder, the sound of his skin brushing against the fabric of my shirt hurt my ears.
Both very weird...
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Posts: 196 | From Mesilla, NM USA | Registered: May 2005
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trueblue
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posted
quote:Originally posted by Aniek: The weirdest is probably this feeling I sometimes get deep inside that I just need to move. It is sometimes accompanied by myoclonus, but sometimes I just need to move. I had a HIDA scan of my gall bladder yesterday, and I came so close to just pushing myself out of the machine so I could move my legs.
It's sometimes accompanied by a weird feeling, that isn't quite pain, deep inside a joint. I get this mostly in my left ankle. It's almost a tickle. I think if I crack my ankle (which I always shock doctors and physical therapists when I do) the feeling will go away. But it usually doesn't.
[/B]
Aniek, I thought I was the only fidget. I can't stay still for more than a few minutes. I'm constantly jumping up to do something. I feel better while in motion. MRIs are particularly difficult.
If I go to the movies, I make sure it's a short one and sit on the aisle. Preferably, so I can fling my right arm and adjust my shoulder.
I do the same while walking around I squat down to crack my knees, because they feel wrong. Everyone around me goes, "Ouch, that sounds like it hurt". I say, "nope that feels much better they were wrong."
The ankle one doesn't feel much better and I only do it with my right ankle, dunno why.
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trueblue
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posted
quote:Originally posted by dleemuse: I just read back my last post...ane wanted to say...
I did not mean it to sound like I was laughing at any person or their symptoms in a mean spirited way.
I know how serious this disease is, but do appreciate the laughter I was given today as I read some of your posts.
dlee
dlee - you didn't sound mean spirited at all, some of this stuff is hysterical, if we couldn't laugh at it what would we do?
Now as for this:
quote:The worst part is...it is hard to sleep while biting your tongue or hitting yourself in the mouth all night.
I'm sorry but it's funny and it sucks all at once. I usually bite my lip and or pierce my lip while awake, it's how I know it's time to have my jaw adjusted.
Probably all that's saving me from biting my tounge and lips while asleep is the appliance that I sleep with. I haven't hit myself in the face but once I punched my ex in the stomache while I was asleep. (Oh, yeah, so was he.) He woke up and said,"What'd I do?"
It had nothing to do with lyme but it strikes me funny still. At the time I felt awful about knocking the wind out of him.
[This message has been edited by trueblue (edited 10 June 2005).]
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