I'm losing my marbles with this, HELP!!

[mokibear]

Hey all. I've been lurking in the shadows and have come out of hiding as I'm having a bad issue now that is driving me insane. This is not good as I am nuts enough on my own. lol

For you who don't know me, I'm a limbo lander for over 4 years now and although I've recently had some new and odd quirky symptoms this one is going to be the end of me.

I've had left shoulder problems for a very long time which also has never been figured out but I have one spot all the time that is the culprit and it will start to hurt to the touch and then I know the spasms will flare in my shoulder and neck shortly after. It can get very uncomfortable and at times very painful and last from anywhere from a few days to a couple of months and then just disappear only to show up again a few months later. I had been to a back specialist who had no clue what is wrong but did send me to PT which did nothing to help and I tried chiropractic who was able to control some of the spasms but said he did not know what that one spot was. I even had acupuncture to no avail.

Now, all this I have become accustomed to but for the last month or so, I have been experiencing head jerks at night. It only happens when I am laying down or sitting back in the recliner and my head will violently jerk to the left and back to it's original position again. It only would occur on a good night 5 or 6 times and on a bad night up to 20.

The last 2 nights have been horrendous. I can barely even touch the spot on my shoulder that hurts and my muscle spasms are out of control and the head jerks were non stop especially last night. I only slept 4 hours the last 2 nights if I got that much and last night I really wanted to cut my whole shoulder and neck off. The head jerks were occurring every 2-3 minutes and no matter if I lay on my back, or right side, or stomach my head jerked. I cannot lay on my left side when it is like this but finally tried to as I figured I could stop my head from jerking to the left.

Well that part worked but being that my head was stopped from jerking, the whole left side of my neck shoulder went into one big spasm. It's not that it hurt so bad but that it was so unbelievably uncomfortable I was in tears. I tried everything I could think of, tiger balm, over counter muscle relaxants, percacet, ice, heat, you name it, I tried it.

I've just started back to work and I could barely function today I'm so tired. My shoulder is crunching,snapping and popping now as it is being pulled towards the spine. I feel like a commercial for Rice Krispies. Please, if any one has any ideas as to what is going on, I welcome your input. I just can't take this much longer or I will be in a straight jacket for sure.

Moki

[Quixotic1]

Moki, that sounds horrible!  It sounds like a huge, painful "tic".  You clearly have a big movement disorder along with everything else.  I wish your docs weren't such dunces.

My only thought is to get a good video of the movements and send them, with your history to a reknowned movement disorder neuro.  Actually I am serious.  I once sent a packet of info to some famous doctors and got such good info back.

I know some people here have seen movement disorder neuros.  Anybody good?  Let's all try to put our collective heads together.  Moki, you've been suffering for far too long.  If I were there I would hold your hand and try to comfort you.  Has anyone tried baclofen with you?

Momma Bear

[Lulu54]

Hi Moki,
Please don't go crazy without me .....  I love a good trip as well as the next person!  LOL

What you describe sounds downright awful - especially the lack of sleep because of the jerking.  Unfortunately I haven't a clue what might be causing this but I'm sure the others around here will have sage advice.

So glad you came out of the shadows - how's winter up there?  How's the wood pile?  I had an encounter with mine last week  that left me with a bloody lip and sprained tooth.  Watch out for those logs ........

Here's hoping you get some relief soon.

be well,
L

[mokibear]

Hey Momma Bear, thanks for the quick response.

I have been on baclofen for my leg spasms but it didn't seem to do much, but I was on a low dose and the twit of a neuro didn't want to up it saying that it wouldn't do anything more on a higher dose. At the time, my shoulder was not in a flare so I honestly don't know if it would make a difference or not.

It just seems weird that I only have one spot that hurts to a light touch and that spot is the only place not tight with spasms. Yet it seems that when it starts to hurt, that is what triggers the rest.

These head jerks though are new. I should say though that I have been also having a bit of a bobble head when sitting still. Just barely noticeable and that has been for about a month now too but not all the time.

You have comforted me by just being here and responding and I thank you for that. Can you read me a bed time story so I don't feel so scared to go to bed? lol

Hugs
Moki

[mokibear]

Hey Lulu, we must have posted at the same time. lol Your welcome to join me in going crazy but it has to be now as I'm well on my way. lol Thanks for the support.

It snowed pretty good today and visibility was getting pretty poor at times. It's been milder though so it's that nice wet sticky stuff. It looks pretty out though with all the trees laden in snow. lol

Dad's wood pile is good and he is pretty happy. So what happened with you? A log jumped out and bit you? lol You got to watch them, they can be pretty sneaky.

Hugs
Moki

[Quixotic1]

Lovely Beauty and the Big, Bad Neuro

Once upon a time they was this beautiful girl.  She had all of life's riches and every day was a celebration.  She was fond of strolling through the woods and caring for life's creatures.  But, One day she came upon a sleeping MonSter.  It seemed peaceful and harmless.  When it awakened it spoke in a beguiling voice.  "Hi, you are yound ang beautiful.  If you will be my friend I will show you wonders you never dreamed out.  You will see with new eyes and walk with new legs.  This sounded enchanting and Lovely Beauty reached out for the hideous creature with her trust.....

Some else can provide the next and the next and we'll entertain Moki through the pain.

Quix

[Lulu54]

Yep Moki, that's exactly what happened. This doesn't fit Q's story but can stand on its own .... be prepared to be entertained!

I had one arm full of logs (well, about three pieces!) and with my other arm I was yanking on one more log to take into the house.  It was under the tarp and it wasn't giving, so I gave it a good  tug.  I should not have been greedy - three logs would have been enough.

Obviously I underestimated my own strength .... that log came flying off the pile from under the tarp and attacked me smack dab in my mouth in my front teeth.  It hit so hard I thought I heard bone break.

I really thought I would move my hand away from my mouth and have a palm full of teeth, but fortunately I didn't.  

I was bleeding pretty good, but not so much that I needed stitches.  You ever look at those women who have collagen injections to plump up their lips and wonder what were they thinking??? Well I can tell you it is not an attractive look on me either.  

I finally went to the dentist Friday to have it checked - I was beginning to worry perhaps I broke something internal because I can't chew on that tooth.  The xrays were negative, so that's good.  I don't have to have any sort of gruesome surgery or have my jaw wired shut.  

The dentist says I sprained my tooth - just like an ankle sprain where you tear and stretch tissues that take a long time to heal.  He is pretty sure my tooth will also feel better eventually.

For now I am still eating very small bites of soft food, chewing on my left molars and far away from the sore front teeth.  Soup would be a great choice but the pressure of the spoon against my front teeth is also unbearable.

The pain should eventually go away, or at least until I see the bill from my dentist who came in on his day off to check my mouth.

Joining you in the pain department,
Lu
  

[mokibear]

Ladies, you are sweet. I tried going to bed but it ain't happening yet. As soon as I lay down, within minutes the head jerking started. Sheesh, I know I can be a jerk sometimes but really!! So I guess I'll sit here for a while and try again in couple of hours. If only I could sleep sitting straight up with nothing supporting me I'd be okay. I'm sooooo tired, you'd think I'd just fall asleep anyways but between the pain and the head snaps it seems it may be a long night.

Quix, I'm loving the story but I'm hanging here!!! lol

Lulu, you did quite a number on yourself. I thought you were kidding with the sprained tooth but I guess there is a first for everything. Hope you can eat pain free soon again. So I guess the moral of the story is wear a face mask when getting firewood?lol

Moki

[michelleric]

Moki,

I am sorry you are in so much pain. Those jerks sound awful! I am taking xanaflex for spasms, which was helping tremendously. At the moment it is not doing what it was, but Baclofen did nothing for me.

I would call your doc and see if there is anything they can recommend to help you.  Not sleeping always makes me so much worse, physically and mentally.  Maybe a sleeping pill would help?

I dont have much to add, but just wanted you to know I am thinking of you and really hope you feel better soon,

Big hugs to you,
Michelle

[saveone]

The MonSter was a truley beguiling creature, known to promise wonders that would blind the eye.  

The beautiful young girl, though, being the kind sweet and trusting person she was took the MonSters hand.  Instantly the wonders began to unfold.  She knew she was about to behold a wondrous sight because her fingers and her feet began to tingle.  They felt both hot and cold, a truly wondrous feeling.

She turned to the MonSter and smiled.  She told him how she felt, how she was experiencing both cold and hot at the same time.  The MonSter smiled and said, "Little one, how confused you are.  What you feel is all in your head.  Created by your own expectations."  The smile he returned was not one of comfort but one the led the little girl to believe, he was not being entirely truthful.

Then he once again raised his head and held out his hand.....

sleep well moki :0)

terry

[saveone]

Lu, I had a similar run in.  I squatted to lay a log on the fire and fell backwards into the woodpile and out into the floor.  I laughed so my family would not be so afraid.

Truth is I bruised the underside on my right arm.  It was a yucky shade of purple and green.

I was extremely grateful I fell backward instead of forward....ouch!  I haven't placed on log on the fire since.  Just good common since...you don't have to hit me twice with the same pan before I get the drift.

take care and no more fighting with logs....they always win.

live well,
terry

[rendean]

Terry: Excellent continuation of the story!

Moki, Lu and Terry: Sending wishes for  an end to the pain.

Moki: an extra wish for peaceful sleep!!

Hugs,
Ren

[mokibear]

Michelle, I think I'm going to call the doc in the morning. I have tomorrow off work thank goodness and maybe he can squeeze me in. I have to work Thursday again so need to be okay. Thanks for thinking of me, I really appreciate it.

Terry, wow, what a great continuation, good job!! Thank you soooo much for making the effort.

Ren, Thanks for the extra wish for a peaceful sleep. I think I'm going to try the couch instead of the bed and see if I can find some way to get comfy without jerking.

[LLWB]

Have you tried a warm, NOT HOT shower or tub? Or a massage pillow if you have such a creature? Some nice chamomile tea and read for awhile might help too.


But the beautiful you girl ran instead to the distinguised looking man in the white coat. He said, "it's all right little girl" You are only dreaming, you don't really feel what you think you feel, it's all in your head!"   So the beautiful little girl returned to the woods, and once again encountered the MonSter, and he said..............

[ShadowsSister]

Hi Sweetie, Here I am thinking I have lost my mind only to read your post and realized once More I AM NOT ALONE...

My "Jerking Spasms" started in my head and neck, for no reason. They stopped after a half a day. Last Thursday they moved into Both My Shoulder Blades and haven't stopped.. I feel as though I have cracked a few vertebra's between the shoulder blades. NOTHING is helping with the pain that is now off the 1-10 chart. There is No way I can get comfortable. It has made it difficult to breathe, I had to open my Trachea Tube twice today just to get some Air flow.

I am so glad I caught your Post. Thank you...!!!!!!

These are bad enough to send me to a Neurologist ASAP ! ! !  and most of you know I haven't seen one of them for almost 14 Years. They don't LIKE ME because I don't fit into their tight little mold of what MS is suppose to Look Like... HELLO Who Does..???

Moki, again I THANK YOU SO VERY MUCH... Now I will go back and read everyones posts to see if there are any answers for us.
Feel better very soon. I will be keeping you in my Prayers..
Love & Hugs{{{{{~!~}}}}}  DJ

[ShadowsSister]

Hi Again,
I forgot to add that my hands are also jerking really hard, I am looking for an Adult Sippy Cup, because I keep spilling my coffee all over me and my Blankets, but they don't HURT like the ones in the Upper  Back.. It's like being hit with a cannon ball.

My Double vision hasn't left yet, it's been going strong since Oct.

I can Honestly say that there isn't a part of my body not being hit with spasms.. NO!! None of this is any FUN... I am just getting more depressed..

I am so Grateful that I am not alone...Thank you all for being out there. I think it's time for a Group Hug
Love, Prayers and Hugs for each of you  {{{{{{~!~}}}}}}} DJ

[mokibear]

Hey everyone, I did finally get to sleep last night and woke this morning to a full back spasm. I tried calling the doc but his secretary isn't in today and the twits in the main office of the clinic said I can't get in till mid February. I left a voice mail with his secretary to call me as soon as she can so we'll see.

It's been a rough morning and I got a call from work saying that one of the ladies I work with (who is a real sweetheart) had her husband killed in a car crash last night. I  had high hopes that this year would be better but it looks like it isn't going to happen. Guess I'll have to mentally prepare for another crappy year.

Thanks to all of you for being here for me. Hugs to each and everyone of you.

LLBW, I did try a warm shower but nada, I did drink some chamomile tea and it helped as far as calming my frustration. lol No massage pillow but may look into that. Thank you and thank you for continuing the story. Everyone is sooo amazing on here and for that I am truly grateful.

DJ, Dear lady, I'm so sorry you are going through this as well and I truly feel for you. I hope you get somewhere with the neuro and let me know if he has any clue to what is going on. You really don't need this DJ, you have been through enough already and I am so sorry this is happening. I have no doubt that you are feeling so depressed over this with everything else that has been happening in your life.

Please, start your own post on this, I think everyone will want to know what is going on with you and support you and they may not see your response to mine as a lot of the new people on here don't know me yet.

MY heart is with you DJ and I join you in the group hug.

[Ufrustrated2]

hi moki,

what is it with the shoulder/arm neuro pain some of us have? it is the kind of pain that i can move that area without much discomfort - but the slient internal nerve like pain just over takes most of my mental energy at times.

baclofen hasn't been much of a keeper for me but i still take it. it is a very subtle med. i don't take it every day either.

welcome and i sure hope you get some relief. we here can empathize and some here are very educated on this subject to help out.

[mokibear]

Thanks for the welcome but I actually have been with this forum for over 2 years now. I've been in hiding so to speak as I am so frustrated being in limbo land that I just didn't know what to tell anyone anymore. I do pop in from time to time but basically just lurking.lol

I get that kind of pain you speak of as my usual irritant, it can drive one batty. I do understand what you are talking about. It just seems mine gets to a point where it flares bad and then the muscle spasms start and now this head jerking thing. I just wish I knew what was going on. I'm tired of the not knowing thing, it's been going on far too long.

The only good thing that has helped me is this forum. Everyone rallies together and even if know one has an answer, they still do what they can to lift one's spirits. Thank you so much for response and it's a pleasure to meet you.

Moki