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?
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.
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
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.
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.
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,
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
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,
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)
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.
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!!
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.