LymeNet Flash: Where are my arms and legs? I can't tell!

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Posted by trueblue (Member # 7348) on :

One day a few months ago. I was laying down to take a nap... ok, nothing unusual there.

As I was laying there trying to get comfortable I felt myself getting very close to the place where you might just drift off if you're lucky.

I then realized I couldn't tell what position my arms and legs were in. I could feel them. I felt a pain here and an itch there... but had no idea where they were in relation to each other or how the were bent.

I had to look. I don't know how long I've been that way it could be a long time and I just never noticed.

I do realize that I have massive neuro stuff going on and this is a just little curious blip on the radar.

Has anyone else every noticed such a thing? A complete disconnect from where your appendages are with your eyes closed.

I don't believe I've ever seen a post about this and wonder if others have that same experience.

(I do know when the doctor had me try to touch my nose with my eyes closed I can't find it. I used to be able to find my nose for quite a few years.)

Thanks for reading this latest piece of weirdity.

Posted by pattilynn (Member # 8065) on :

Yes. I've had this for over a year. It's called loss of position sense. It's neurological. I have it mostly in my legs. I have to think about walking because it seems the signals telling me to walk and where my legs are aren't working correctly.

Posted by char (Member # 8315) on :

I had this symptom.

I got very clumsy and keep dropping things. It was crazy trying to give my kids pills as I kept dropping them. Also administering my daughter's IV abx I threw away a lot of the supplies because my clumsines caused me to touch them on thing so they were no longer sterile.

We laughed about my kissing the kid's forhead as they had opposite problem with sensitive skin and felt I was clobbering them with the kiss!

This symptom has improved a lot with treatment!

I think you should to contact dr to see if it would be helpful to reduce dose of abx or alternate days. Your situation sounds pretty severe.

Keep us posted!

Char

Posted by trueblue (Member # 7348) on :

Thanks pattilynn and char (the kiss clobberer),

It seems that with my eyes open I know where things are. However, I do play a lot of pinball with my body. It seems I'm forever banging into or bouncing off stuff. (And have the bruises to prove it.)

One day last week I hit a door frame with my entire left side. Missed the opening by about 8 inches. [Roll Eyes]

I kind of feel better about not being the only one to notice this but am sorry anyone else does too. If that makes any sense.

I didn't know it had a name, either.

I told the doctor about it on my last visit. Although, I doubt it was surprising after making me try to find my nose the second time and still missing.

At the moment I have no ABX to reduce as I'm on a small break. I should be back on in a few days, LFTs permitting. I'm only on Babs meds (sans ABX) and some supplements but have been getting steadily more neuro for a long time.

Char ~ What type of treatment do you think helped most with this sort of thing? I've had great success, swiftly, in the past with IV for neuro stuff but have never noticed an improvement with orals. Perhaps I haven't taken the right ones, yet. Unfortunately IV is not an option for me right now; I wish it were.

I cannot type even one word without having to fix it several times and I'm looking at the keys and keep missing. I wrote 2 notes to people yesterday and found I was unable to work a pen again. I tell my hand to make one letter and it writes another.

I do find this somewhat amusing but it would be moreso if I saw any evidence of it improving rather than declining.

I think I'll keep laughing at it for now, not much else to do.

Posted by AliG (Member # 9734) on :

quote:
Originally posted by trueblue:

One day last week I hit a door frame with my entire left side. Missed the opening by about 8 inches.

DON'T YOU JUST HATE WHEN THAT HAPPENS??! [dizzy]

Hi Trueby!

I thought I was just a clutz, glad to know I might some day stop doing that! [lol]

The other thing sounds vaguely familiar, but you know me & the memory (or lack thereof). If I had it, it must have passed because I don't believe I've had it lately. (Either that or my memory has really gotten bad [Roll Eyes]

)

BTW- How's the mold thing? So sorry you're going through all that. Just what you needed, right?

Here, this is for you! [group hug]

Ali

Posted by trueblue (Member # 7348) on :

quote:
Originally posted by AliG:
DON'T YOU JUST HATE WHEN THAT HAPPENS??!

I thought I was just a clutz, glad to know I might some day stop doing that!

The other thing sounds vaguely familiar

BTW- How's the mold thing? So sorry you're going through all that. Just what you needed, right?

Here, this is for you!

Ali

Yeah, and mom saw it almost fell over laughing, it was pretty funny and stunning at the same time.

I do know from past experience that the clutziness does go away. [woohoo]

(It all goes back to the waiting is the hardest part.)

The "not being able to picture where my appendages are" might have been something I've always had (or had for a long time) and only just noticed recently.

(The mold thing is under control, just have to figure out what was making water come up from the slab and then figure out what to do about the large exposed concrete spot in my bedroom.)

Thanks for the smiles and hugs Ali! right back at ya... [group hug]

Posted by Tincup (Member # 5829) on :

Yuuuuuuuuu whoooooooooooo..

Got some missing parts?

Look in the cookie jar. I always find important stuff in there.

One night in Florida.. a storm was hitting us .. as they often do.. and all the lights suddenly went out. While not having moved an inch when this happened... I immediately fell out of my chair and onto the floor.

From that position I could not tell which way was up.. which was down.. or sideways. REALLY freaky. I could not push myself up off the floor cause I had no sense of where the floor was.. although I KNEW I was on it. I also could not figure out how to sit up. I laid there like a bowl of jello.. not sure what to do. NOT fun.

It reminded me of trying to sit an infant upright on the bed... and like them... having no ability to hold their body upright in one position. You know how little babies will actually fall forward with no attempt to stop themselves.. smiling on the way down..... or they may tip over sideways .. or backwards?

I kinda felt like a turtle on it's back .. not able to figure out what to do.. and if I could.. not knowing how.

Then... there is the "phantom pain". Having pain in a limb.. like in my elbow.. but..

My elbow is not there.. it is about 9 inches from where my brain thinks it is.

That's a hoot!

Not bad enough to have pain all over your body.. but then to have it even where it isn't!? Holy Toledo!

May I suggest? Keep flashlights in ONE designated spot in the house.. in EACH room. For example.. I keep a flashlight in all rooms.. to the right of the door after you enter it. I keep one by the bed.. and even one in the bathroom too! In an emergency at least I usually can reach a light.

Once I have the lights on.. I can orient myself to understand the surroundings.... and I am able to function.

Not saying you will get that bad.. but just in case.. keep a source of light close by at all times in case this were to happen. This symptom was surprising and I did NOT expect it or know I had that problem until I experienced it.

I also was in LOVE with any and all doorways. No matter how normal it seemed to simply walk through.. I was forever covered in bruises from cracking elbows and/or my shoulders into them.

And I KNEW I took aim.. and was always careful.. but somehow.. they would bite me bad when trying to traverse through them.

And.. just so you know.. it can get better. Don't ask what made it better.. cause I have no clue. But with treatment for LD.. it did improve.

Now, rather than being totally in love with doorways... I only have an ocassional affair with them.

[Big Grin]

Posted by trueblue (Member # 7348) on :

Uh-oh!
I have no cookie jar; now what am I gonna do? (and I think I need some cookies, right now, too!)

[Big Grin]

I'm not only attracted to door frames but also coffee tables, corners of sheves, mostly anything that might jump out into my way.

I'm hardly counting the listing to the left thing.

[Big Grin]

TC ~ Your story about the storm is hitting a little close to home. I can't recall the exact incidents but had similar things happen... where I couldn't find my way and didn't understand.

I have woken up and not known which way I was facing. It's my bed it faces the same way all the time and I was confused.

[Roll Eyes]

I really posted this because I thought it was kind of weird and curiously amusing.

In all honesty (and I'll deny it later)...
it's not feeling that way now. I'm petrified. This is a little thing compared to what else is going on.(It seems I just shot myself in the foot.)

[Frown]

Thank you, TC, for the reply, advice and perspective. It is about perspective isn't it?
[kiss]

I will put batteries in rest of the flashlights. I've been holding out on most of them hoping to stave off hurricanes.

[Big Grin]

Posted by trueblue (Member # 7348) on :

quote:
Originally posted by cave76:
What pattilynn said.

Propioceptors:

Limb position sense (LPS) is the ability of a subject to detect the position of his/her arm or leg in space.

During locomotion, limb position sense is regulated by sensory feedback to the nervous system from proprioceptors, which include cutaneous, vestibular, muscle and joint receptors.

These propioceptors respond to locomotion and provide information on spatial positioning of the limbs.

I'm sure part and parcel of this lovely neurologic disease!

Thank you, Cave!

I never heard of propioceptors before. Need to go a googling or find those cookies really soon. [Wink]

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by trueblue:

(I do know when the doctor had me try to touch my nose with my eyes closed I can't find it. I used to be able to find my nose for quite a few years.)

Strange! I used to miss my nose too! BUT... I just tried it [several times] and I hit it every time! Something for you to look forward to, my friend!! [Razz]

I still run into walls occasionally....but NOTHING like I used to!!

Posted by trueblue (Member # 7348) on :

Thanks tutu,
I just tried it too and could hit it perfect but a few hours ago was missing by an entire facial feature. [lol]

Posted by stella marie (Member # 7216) on :

Hey there trueblue my black and blue friend!

No bump in the night stories from me but I still cannot walk a sraight line w/ my eyes closed. They had me do this on my first LLMD visit, guess they needed a laugh???

I could not put one foot in front of the other, had no idea where that other foot was, still can't.

If I try... BOOM I fall over.

Where some extra padding, ok?

Take care you, trueblue-boo-boo!

Stella Marie

Posted by trueblue (Member # 7348) on :

Thanks Stella Marie [lol]

They don't let me do the walking with eyes closed thing, anymore. Apparently, just watching me stand and closing my eyes is entertaining enough.

trueblue and black
(which is kinda different than "sky blue and black"... great song though)

Posted by pattilynn (Member # 8065) on :

Excellent definition Cave!!!! It's a scary feeling, kinda like you have no control over your limbs.

Posted by charlie (Member # 25) on :

TB....the same thing happened to Jenny...she was walking into walls and walking off to the side like a crab or something...babs treatment fixed it after awhile.

Charlie

Posted by trueblue (Member # 7348) on :

quote:
Originally posted by charlie:
TB....the same thing happened to Jenny...she was walking into walls and walking off to the side like a crab or something...babs treatment fixed it after awhile.

Charlie

Thank you, thank you Charlie! [kiss]

That was just what I wanted to hear.

I've been afraid to ask if Babs treatment "might" help. Even if it doesn't I feel like I'm still heading in the right direction.

You've never steered me wrong before. [Wink]

hahahaha, edited because I spelled wrong wrong. [Roll Eyes]

Posted by lymeinhell (Member # 4622) on :

Ok, now I don't know if I should be laughing out loud, or feeling bad for you...

But your episode does bring back memories (I think?) I think my began with a 'super-awareness' of my hands. If I saw my hands move near my face, I would get all trippy... Like far out, they look weird, hey isn't it cool that they move without me thinking abou it... (free LSD trip courtesy of Lyme??)

And then forgetting how to make my legs move to get off the couch hit shortly thereafter.

The whole thing was kind of unreal, but did eventually pass. Herxing? Inflammation putting pressure on the brain? Both? Or just [loco]

I too was the bruise queen for quite a few months though. (doorways and immovable items like couches and chairs were my magnets).

And yowza, the agony of a bump - it was never just a little bruise and a little ache - one time I smacked my foot goodness knows where, and I had this gigantic purple bruise and a killer foot pain for weeks before it finally went away.

I don't think this is something 'normal' people think about, nor do I think it is something you've had going on a long time and just didn't notice it. Chalk it up to the fun bag of tricks you've been going through lately... (and make a note in a symptom journal so you can read about it a few years from now and laugh about it!!)

[Big Grin]

Posted by trueblue (Member # 7348) on :

LIH
You should be laughing! I've had the bumper car syndrome come around periodically for years and years.

The position awareness is new. And are you saying I'm not "normal"? Ha, Good!

Posted by trueblue (Member # 7348) on :

Nothing much matters at this point, anyway. LFTs elevated further off the ABX for 2 weeks, so any and everything is stopped. I'm done for a while.

Sorry, I'm feeling pretty sorry for myself right now. It's the usual... the sicker I am the less chance of getting or tolerating treatment. Why even bother? People want to know why I gave up before...

[shake]

Posted by lymeinhell (Member # 4622) on :

Ok, all together now - POOR TRUE BLUE!!

Feel better now??

Sorry this sucks so much for you.

(and no, I'm not getting very much work done today).

Posted by Carol in PA (Member # 5338) on :

"Nothing much matters at this point, anyway. LFTs elevated further off the ABX for 2 weeks, so any and everything is stopped. I'm done for a while."

Wait a minute, your liver function tests are elevated, even though you've been off the antibiotics for two weeks?

I just don't know what to say.
You've been trying so diligently, and putting up with all kinds of crap.

[Frown]

Carol

Posted by trueblue (Member # 7348) on :

Thanks Julie (the work slacker) and Carol.

I'm done with my pity party now. Nothing much to do but wait it out, it's ok.

I just didn't see it coming.

Hugs to you both.

Posted by trueblue (Member # 7348) on :

This came up recently and wanted to bump it up.

I did go back on Babs tx for 5 months and this symptoms is no different. Darn, I know it might be too soon.

Is there a possibilty the position sense thing could be a Bart sx? Neuro stuff doesn't appear to be resolving much with Babs meds nor has pain.

When I finally did ask the doctor about this I was told the same thing Julie said. "No, that is not normal!" But no further explanation.

Posted by achey (Member # 6284) on :

Has it improved any since last year Miss True?

Posted by trueblue (Member # 7348) on :

Not at all. I'm still playing "close my eyes and guess where your limbs are".

The bumper car symdrome varies. I'm often fairly colorful.

As far as I can tell, the neuro sx are not any better (then again, there's been little progress, overall). They do wax and wane unpredictably.

Being unpredictable is not as fun as it sounds. [Big Grin]

Posted by CaliforniaLyme (Member # 7136) on :

What a perfect description of a strange symptom that I remember all too well!!! Floating!!! For me I felt like I was just this disconnected head, floating!!!!!!!!!!!!!!!!!!!!!!!!

I had that!!!! And bumped like crazy into door sides!!! And car doors and cars my poor head!!!

I also had progressive numbness beginning at my toes which worked its way upwards and then with my eyes open I could not feel my legs at all!!!

Thank goodness for IV Rocephin!*)*)!!!

Posted by ThursdayNext (Member # 12198) on :

Hi! I'm a newbie here. Just diagnosed with Lyme 3 weeks ago. My symptoms started in April, but I must have been bit last summer.

Anyhoo, I have this peculiar symptom too! I noticed it while laying in bed & not being able to tell where my limbs were located. If i look at them, or move them, everything makes sense again. But if i'm just dozing off, it's hard to tell which arm/leg is where. However, when i'm awake everything is normal, no bumping into door frames, etc.

I read an article about Lyme disease that mentioned this as "disconnection" and added jokingly - "and here you thought you were making progress with your yoga!". you know, the whole mind/body thing. It made me smile.

Posted by trueblue (Member # 7348) on :

quote:
Originally posted by ThursdayNext:
Hi! I'm a newbie here. Just diagnosed with Lyme 3 weeks ago. My symptoms started in April, but I must have been bit last summer.

Anyhoo, I have this peculiar symptom too! I noticed it while laying in bed & not being able to tell where my limbs were located. If i look at them, or move them, everything makes sense again. But if i'm just dozing off, it's hard to tell which arm/leg is where. However, when i'm awake everything is normal, no bumping into door frames, etc.

I read an article about Lyme disease that mentioned this as "disconnection" and added jokingly - "and here you thought you were making progress with your yoga!". you know, the whole mind/body thing. It made me smile.

Hi and welcome, Thursday! How are things at SpecOp-27? [Smile]

Your description is dead on. That's exactly when I first noticed it, dozing off. Though I notice, now, it's really there all the time. Funny because my limbs do work, mostly, right. This was/is something new for me. (The bumper car thing predated this by quite some time. I was undiagnosed for 10-12 years.)

Have you started treatment, yet? I hope it goes well and swiftly. Good luck and hopefully we can find our appendages again soon.

"plock - plock"
(This is the first time I've seen a Ffordian name hereabouts.)

Posted by ThursdayNext (Member # 12198) on :

Hi Trueblue,
Things are good with Jurisfiction...just hanging out with Miss Havisham [Smile]

I did start treatment, i guess i'm on the standard doxy 100mg twice a day (which my doc started before the results came in).

I have a follow-up appointment this thursday (not thursday next [Smile]

) Do you think i should ask about increasing my dosage? Or trying a different medication? I've been taking abx for 3 weeks, and haven't noticed much of a difference, but it is early.

Thanks!

Posted by trueblue (Member # 7348) on :

Hi Thursday,

I 'think' the recommendation for Doxy is 100 mg for each 50 lbs. So I would need at least 300 mgs at around 150. (Many people take 3-400 mgs.)

You might want to go higher on the Doxy and see what happens. It is early yet and you might feel worse at the month mark. Don't let that discourage you it's a sign of bad stuff is dying.

Doxy is often used as a first antibiotic for Tick Borne diseases because it also hits several coinfections, as well as Lyme. I'd ask to raise it and see how that goes before switching to something else.

(That's just my non-medical opinion.)

Do you have a doctor that's familiar with treating these type of infections? Have you gotten your results back, yet? And did they check for coinfections?

The new book is coming out soon.
If you haven't been to one of Jasper's book signings (and there's one in do-able distance) try to catch him.

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