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Tremors & Jitters

Mar 16, 2015 6:10 PM

I've been having weird tremors for about 2-3 weeks. I've had two episodes where I feel strangely shaky from head to toe (on my insides), but the only visible shaking was my hands/arms. The first episode lasted 6 hours and the second appx 4 hours. Two-three other episodes were very mild shaking of my right hand and barely noticeable in the left, both lasting less than 3 hours, and feeling very jittery inside. The first episode was weeks ago, but I've had 3 episodes in 3 days. When I get body tremors I take 1 gabapentin and within 30-60 minutes the tremors start going away. I've even got mild to major headaches the same day.

I actually recorded two episodes to show my doctor. I have an appt with the neurologist next Monday about the neuro-psych eval, but I'm getting worried because they're occurring every day since last Friday. One time I thought it might be blood sugar because I felt really hungry and felt some better after eating. But eating hasn't helped any other time.

My neighbor witnessed it yesterday and said his mom use to have seizures like that. Even my daughter who studied in the medical field thinks it may be seizures, or diabetes or both. I haven't posted to others since Friday but twice because I generally feel unwell, not right, but not sick either. For the first time in a long time I'm actually scared of the unknown.

Mar 16, 2015 8:52 PM

I hope you get answers. :(

Mar 16, 2015 9:37 PM

Me too. I'm trying to stay positive, hoping its a medication side effect, rather than another major problem. My face & scalp started tingling 2.5 hours ago and now its moved down my neck into my left upper back. It feels creepy. 😲 At least I know its not my worst fear...spiders! Lol 😨 Waiting a week is gonna seem long

Mar 16, 2015 9:42 PM

Do you ever get the sensation that spiders or other bugs are crawling on you but when you look nothing is there? That happens to me way. Too. Often.

Mar 17, 2015 7:50 AM

Lol no, thank God! When I was a kid we lived in a housing project. It was infested with cockroaches! They'd spay only 1 apartment and the creepy things would move to the others. My sister & I slept with the covers totally tucked under us. Me, with overactive bladder, had to always get up to go the bathroom, and they'd be all over the floor & walls! I hate them and get shivers telling you this!

Later on, my husband & I rented a house in the country. I was watching TV with our girls and went to the bathroom, leaving lights off because of the way it was built (you didn't need every light on). Going back to the TV something ticked on my arm. When I casually swiped down my arm (thinking a loose hair had fallen), my fingers touched something I knew wasn't right. I rushed to the light switch and turned to see... A huge black spider the size of a tablespoon! I immediately went to screaming in panic attack and that put me in an asthma attack! Omg!!! Over the next 2 months more spiders kept coming out of the overhead vents. When one dropped on our daughter's face in the middle of the night, she woke the whole house screaming. My husband put window screen material in each vent and 6 bug bombs in the attic. It didn't phase them. We put put in to buy a house immediately, and thank God we have been living in it 13+ years, spider & roach free! I get tingling but never bug crawling sensations... Oh thank you God! Lol

Mar 17, 2015 7:58 AM

Oh that's terrible!!! It's so stupid how there are so many vacant foreclosed homes out there that are perfectly good. Yet people are living with cockroaches covering thier floors. So grateful to be warm and not homeless.
We lived in naval housing when I was very young. A cockroach crawled into my ear and got stuck because they can't crawl backward. It took a couple days for doctors to get it out.

Mar 17, 2015 8:06 AM

Flappsy you might see if you can get in to see your Dr thus week instead of waiting until next week. It could be something serious. Oh I can't stand clocks or roaches either. I've had one get in my ear before to and it was very painful. Thank God we don't have either one in our house. I was told to use peppermint oil and I can't remember the rest and spray around the doors and windows outside. They don't like it.

Mar 17, 2015 8:07 AM

Sorry I mentioned spiders not clock lol

Mar 17, 2015 8:17 AM

My sister got a roach in her ear but it was after she was married. I'm a true bugophobic now, especially spiders & roaches! Ewww.

Weezie they stay so backed up I doubt they can get me in earlier. I'm wondering if its coming from the neck discs and it didn't show up 6 months ago on the myelogram.

Mar 17, 2015 10:51 AM

Oh no, FlappsyLady!!! I am so sorry for your situation. I'm praying for you as always. I understand those inside tremors. When I am on anxiety overload (like now) when I wake up in the morning or start dozing off and waking up my body feels like someone startled me. The entire inside of my body is trembling and if you look close, you can see it in my abdomen. I thought that because it was upon waking, I had a sleep issue so I had a sleep study. (No issues with apnea or lack of oxygen, thank God. It is a horrid feeling. My body also has been "jerking" as I fall asleep. (Hypnogogic Jerk) which can be just one hand, my leg or my whole body. From what the doctor said, it's normal and some have it worse than others. Stay strong and know I'm here for you to lean on any time. They will get it sorted out and it will all settle. All the best and good luck. πŸŒ»πŸ™πŸŒΊπŸ’•

Mar 17, 2015 1:12 PM

AlwayZ, thanks. But I don't think its anxiety because sometimes the tremors are just in the right hand and sometimes both, sometimes with jitters and other times without. After drying my hair this morning my right hand was trembling. After eating lunch I got whole body jitters & both hands. Now its slacked up some.

Mar 17, 2015 1:13 PM

Tracking glucose but its not matching. Lows at 104 & highs 136-148.

Mar 17, 2015 2:02 PM

Flappsy maybe it does have something to do with your neck. It's a shame you can't get in any earlier than next week. If it happens again maybe you should go to the ER or an urgent care facility. Will keep you in my thoughts and prayers.

Mar 17, 2015 8:22 PM

Two days in a row now I've gone from half a day with trembling hand(s) & inside jitters, to the other half day with tingling that starts in the left temple and moves to include the whole left side of my face, lips, scalp, back of neck, tops & back of shoulders and left upper back. I've tracked my glucose and its normal. I use to have the tingling in the left temple before getting a migraine. All my headaches (migraine or not) have moved to the right front forehead to the neck. My left eye socket is even tingling. Ugh!

Mar 18, 2015 12:56 AM

FlappsyLady, I really didn't think that your situation was anxiety however, wanted to let you know that I fully understood the inside tremors. I hope that your doctor can figure this out with you since you are journaling to see if there is anything you can spot with your glucose, etc... Was wondering, have you taken any new medications or perhaps are using something over the counter that's having an adverse effect with you prescription meds?? Wish I had more thoughts or better suggestions. I'll continue to pray for you so that you will receive resolution or at least get some relief. πŸ’•πŸŒ»πŸ™πŸŒΊ

Mar 18, 2015 1:33 AM

Flappy I get the jitters I call them shakes. They are so bad sometimes I can hardly walk or talk. It got to the point I would ask people if they could see me shaking or if it was just on the inside. I seen a neurologist and Parkinson was ruled out. Her determination was that when my pain level reached a certain point my body would shake. I guess i didn't realize I was in that much pain. I did notice if I got upset or had anxiety it severely increases it. I hope yours turns out to be nothing serious. Sending good thoughts your way.

Mar 18, 2015 8:09 AM

AlwayZ, I do have 4 new meds, Imdur (heart) & Gabapentin for the pain, Qvar (asthma) & Levothyroxine (thyroid). All have been started in the last month except the Gabapentin, and I only take it at bedtime. While having real bad tremors 2x I took it.
When I've taken the gabapentin its reduced or alleviated the tremors and jittery feeling.

The newest thing has been the last 48 hr straight I've had tingling from the lips up to the left cheek/eye socket/temple/ear, over the scalp, down the neck to my shoulders and left scapular area.

Shammagren, I really don't think its anxiety because usually my anxiety affects my asthma & breathing, and its normal, so is my blood pressure. An uncle who has Parkinson disease saw my tremors and said I do just like him. Parkinson and MS, which is still a question, could explain the tremors and maybe the jitters, but not the face/scalp/neck/scapula sensations. I'm baffled by it all. I've considered my meds, but each was given by a different doctor for different reasons. I can't just come off something like the Qvar, Imdur or levothyroxine. Monday is a long way from today and they can't fit me in earlier. I'm not anxious but I am frustrated.

Mar 18, 2015 8:29 AM

I hope this resolves for you. I've not had what I would consider tremors but for several years all of my friends would tell me my head was 'bobbing' It would do it most when sitting still watching TV or something like that and I NEVER felt it! It was kind of funny because someone would say " look she's doing it!" Then another "wow I see it" and the whole time I would be like" what the hell are you guys talking about?"
I know it's way different and not so scarey but it went away ( or they just don't notice it anymore) how would I know....
I am not making light of your frustrating and frightening situation but just to take your thoughts elsewhere feel free to think of me as a big bobble head 😜

Mar 18, 2015 10:00 AM

Hey I love bobble heads! 😁 Lol.

Its the not knowing why it's happening that's unbearably frustrating. Knowing what you're dealing with helps with the fight against it and with acceptance.

Mar 18, 2015 11:16 AM

FlappsyLady, I know you have issues with your neck like I do. Perhaps when you were sleeping, something shifted in your cervical spine and is irritating a nerve causing that strange tingling sensation. It is possible that the combo of all the new meds are causing those jitters and I would call and ask your pharmacist because they would know chemically if that may be the case. I'm praying for you and hope you find some answers.

Mar 18, 2015 3:31 PM

I just got home from the Urogyn doc appt, where we were suppose to be setting up treatment for the pelvic floor muscles. All that came to a screeching halt! The doc & nurse witnessed my tremors, right hand only. They started back up while drying my hair and worsened driving the car. He asked if I was seeing a neurologist and I told him I have an appt Monday. He said nothing is as important as finding out what's causing these tremors, and after reviewing my newest meds, then the ones I've been on awhile, his thoughts are MS, Parkinson's, Diabetes, & nerve damage somewhere. He upped my gabapentin since it actually reduces the tremors. I cried coming home and I'm still crying because I'm so frustrated. I'm sure I'll have to rid

Mar 18, 2015 3:34 PM

Oops... I'm sure I'll have to ride the merry go round of doctors and tests while they push me off on each other. Why can't I just get answers for one problem without having something else raise it's head!!! 😭

Mar 18, 2015 3:51 PM

It is so stinking unfair to have to play the musical doctors game!!! You already deal with enough without being shuffled like a deck of cards! I'm so sorry

Mar 18, 2015 4:34 PM

Since you have questions about blood sugar do you have anyone that can loan you a glucose meter? That would be one simple way to have an answer quickly. Just a thought.

Mar 18, 2015 4:40 PM

Flappsy I am so sorry that you are getting the run around with your Dr's too. My primary says wait until you see the Neurologist before he try to adjust my pain meds to try and get my pain under control so my blood pressure can get under control. Today my Neuro said wait until we do nerve test and MRI of head. It's a circus ride back and forth. I get sooo frustrated it's rediculious what they put us thru. Keep strong in your Faith and God will bring us thru this to the other side. He say's he won't put more on us than we can stand maybe we are going thru this to be able to help someone else.

Mar 18, 2015 4:47 PM

Oregonhomestead, its is very frustrating. I sometimes wonder is it because they just are familiar enough to recognize what is going on.

My daughter called and got me laughing about my granddaughter, so at least I feel better "releasing the steam valve." Lol Gotta love those grand babies antics... πŸ˜†

LMB, my sister actually gave me a meter last summer. Her husband was diabetic and had several units. She's now diabetic (as our mom & ggm was), but didn't need them all. My blood glucose is running 104-146. I guess that's normal; according to the instruction book it is. I was hypoglycemic when pregnant but that was 30+ years ago. And sometimes the tremors are all over or just the arms & hands, and other times its just the right arm & hand like today.

I took a gabapentin after I got home, appx 4 hours after they started, and the tremors are completely gone. But every muscle and nerve is wracked with cramp like pain. I'm waiting for my husband to get home, to rub Voltaren gel in. I do have stinging tingles from the elbow to the the palm of the hand and on the back between the ring & middle fingers. The thumb is stinging at the palm area. This too is new.

Mar 18, 2015 4:50 PM

Weezie, I truly believe every word you said. Except which "other side" are you talking about? Lol, just kidding. I get it πŸ˜‰.

Mar 18, 2015 7:16 PM

The tremors are back again, this time in both hands, arms, shoulders and upper back.

Mar 18, 2015 9:02 PM

To all of you forum friends I have a picture that would make you all smile if only I could post it on here. I guess if they added that ability the forum would get flooded but I believe sometimes a smile makes everything a tad better even if only for a moment.

Mar 18, 2015 9:33 PM

FlappsyLady, I can't express enough how sorry I am that you are now going to have to play musical doctors to get your answers and figure out how to get you better. That has happened to me many times and it really sucks!!! I'll be praying for you that you're not being sent to and fro for very long before you're getting the care you deserve to make you better. Stay strong, keep the faith and know that I will be here whenever you need me and I'll be thinking of you and praying for you. πŸ’•πŸŒ»πŸ™πŸŒΊ

Mar 19, 2015 2:35 PM

Update: woke with tremors that worsened with personal grooming. Called 2 doc offices and both out. Told me go to urgent care. Sent me to ER. By then hand turning cold & blue. Doc pressed a spot on back of shoulder, PAINful but tremors stopped temporarily. Gave 2 injx, muscle relaxer & nerve block to brachial nerve. Told to go home, rest, follow up w orthopedics and neurologist... Cervical radiculopathy.

Wishing everyone well but going to rest & break from any unnecessary hand use (my dominant hand). Shots were suppose to last 6-8 hr but barely made it 1.25 hours. Blessings to all! πŸ™πŸŒΌ

Mar 19, 2015 8:03 PM

Flappsy I am so sorry that you are going thru this. I hope that you can get some rest tonight. Have you asked your Dr about getting on Savella for your nerve pain in your lower body. I started taking it with the Gabapentin about 4 yrs ago. And it's a life saver,it keeps me going. Will keep you in my thoughts and prayers.

Mar 20, 2015 3:08 AM

FlappsyLady, I'm sorry you're going through this, my heart goes out to you. I pray that what you are dealing with can be remedied. I'll be saying special prayers for you that this is diagnosed and resolved quickly. I hope you can have a peaceful night. Stay strong and hold strong to your faith. All the very best to you. πŸ’•πŸŒ»πŸ™πŸŒΊ

Mar 20, 2015 8:59 AM

Sending healing vibes your way Flappsy. 🌾

Mar 21, 2015 6:21 AM

Thank you all for the well wishes and prayers. Its been a rough 3 days. I'm laying here wide awake because of pain in the lymph nodes under both arms. I was so tired all day yesterday, and the TIZANDINE they gave to relax amount to a sugar pill. The nerve blocks ck the ER doc attempted didn't last even 2 hours, but was suppose to 6-8 hr.

I wasn't able to do much yesterday and every time I used my right hand for more than a few minutes my arm/hand would be trembling. I went to the grocery store with my husband and I gave out by the time we finished. I was walking so slow he kept offering to get me a cart. I should have done so! They've given me steroid inhalers which have helped, but I literally get exhausted with the slightest effort, I'm now wondering if I have chronic fatigue.
I collapsed in tears when I got in the car because my hand had tremors so bad, from trying to pick up items, or hold my purse or onto the buggy, all the muscles in the hand and arm had cramps. It does the same when I dry my hair or hold a pen to write. My writing looks like an elementary student because of the tremors! Anyway, just wanted to say thanks to all of you, and God bless! πŸ™πŸŒΌ

Mar 21, 2015 10:33 AM

Flappsy I am so sorry that you are going thru this. I know it's hard to give over and use one of those shopping carts,but it's better than struggling to walk and pushing your self to the point of exhaustion.

Mar 21, 2015 10:48 AM

FlappsyLady, my heart is hurting for you. I'm so sorry that you are having such a horrible time of it. Nobody should have to suffer, it's a nightmare. I will continue to pray for you and I'm sending you gentle hugs and the better of my two bad shoulders to lean on.. πŸ’•πŸŒ»πŸ™πŸŒΊ

Mar 21, 2015 11:59 AM

The Tizanidine worked to stop my visible large spasms in my back but it was strange because it seemed to slowly and almost stealthily make them diminish. I still have spasms but haven't had the big ones that made me literally grow hooks on my hands and climb the wall ( okay I know that was weird but I AM from Oregon) I'm wondering if the tremors are just to much for the Tizanadine? I know it's used for MS but that's all I know. I am sending good mojo for improvements and answers and only wish I could do something to help! Stay strong and Oregon loves you🌞

Mar 21, 2015 1:53 PM

I wish we all lived close so we could visit with each other, and help we one of us is going thru a bad time.

Mar 21, 2015 6:29 PM

I had tremors and the shakes. Scared me too death! It was caused by the neurotin so I am no longer taking it and the tremors and shakes are gone. Neurotin was originally for seizures.

Mar 21, 2015 8:59 PM

Thanks ladies for the hugs, prayers, loving thoughts & mojo... Its great having met you all! And you too Godsgirl!

I don't think I'll hesitate to use a cart next time. I haven't done as much today and the tremors haven't been as bad. I tried to take it easy because we had to go to our 2 granddaughters birthday party. But I noticed my leg muscles are drawn tight tonight. I feel exhausted again too. I'd almost bet I have chronic fatigue for sure. The least exertion wears me out.

I read the Tizanidine was for MS. The ER doc asked if I had it and I told him they were suppose to test me for it. I'm thinking that had something to do with his choice of med. But when he pressed on the nerve in my shoulder the tremors completely stooped, until he let go. As long as I don't grasp anything my hand/arm is fine. But when I hold a pen or utensil, steering wheel, etc, my muscles cramps and the spasms start up. I joked that I'd need PT to learn how to use & write left-handed. Lol

I've only been on the gabapentin less than a month. I also started 2 other meds about the same time. The odd thing is, I started tremors 2 days after. I've wondered if there is a connection to one of them; Gabapentin, Imdur & Qvar. I see the neurologist on Monday. We're suppose to discuss the test for MS, Lyme's, Lupus etc. But I'll bet he's going to say something like, "this pinched nerve is likely your problem," and not go any further. Just like most doctors... He'll say, "Oooh, we have an excuse that covers a wide spectrum so we have a reason to push this patient on someone else. ". I hope I'm wrong, praying I am and that he won't be like all the others. Goodnight & God bless your sleep with peaceful rest! πŸ™πŸŒΌ

Mar 21, 2015 9:31 PM

I really wish we all lived in a reasonable proximity of one another as well... It would be great to be able to have visits when we need each other.

Mar 21, 2015 9:38 PM

Push for the ms and other things tests! I know you will anyway.
My doctor had me on tizanidine for some spasticity in a couple muscles. It felt like it worked very gradually and more like it helped keep muscles loose when a massage therapist worked them out rather than doing all the work itself.

Mar 21, 2015 9:43 PM

Isn't the Tazanidadine the muscle relaxant Zanaflex??? I'm on that... I take 4mg pills up to 4x a day. They are the only pills out of everything I take that makes me stupid.. (Really loopy). I have to be careful when I take them, they make me fall asleep even in the middle of a conversation.. They are very short acting so that part of the effects wears off quickly but it's crazy.

Mar 23, 2015 7:57 AM

Aliya I am making my husband go with me because he knows something isn't right, and 2 speaking concerns is always more effective. Yes, AlwayZ, they are the same drug. I'm on the 4 mg 4x day, but I really can't tell they're helping.

Then again, maybe a little. Yesterday was a totally free of tremors day. But I took a lazy day and didn't wash my hair, which blow drying always starts it up. But the tremors have been replaced by shooting & throbbing pain that's stings/burns as well. I'm praying the doc I see today will do an EMG.

Mar 23, 2015 10:26 AM

I'm glad it seems to help. I hope that if they do the EMG it's not too painful. I've had three of them and said I'd rather die than have a fourth. I hope they get you sorted out and give you peace of mind.... You've been through enough and deserve a much needed break. πŸ’•πŸŒ»πŸ™πŸŒΊ

Mar 23, 2015 2:28 PM

Update: I saw the neurologist for a follow up on the neuropsych eval by the other doc. This doc said he agrees with the results; my depression levels probably are up because of the issues im dealing with, and the memory lapses are not true dementia (ie: Alzheimer's & such). They both said although I am forgetful "in the moment" I still have very good recall ability, so it too is likely caused by the issues I'm dealing with & stressing will only make it worse.

As for the tremors and jitters, he's deferring to the orthopedist since I already have a history of neck issues with that doc. But he also said he's keeping an open mind that it could be something neurological causing it. He's holding off on an emg because it may not be needed by the ortho doc.

He also said it is very easy for doctors to dismiss a patients issues once one thing had been identified, because many illnesses and symptoms play off of each other; such as depression can cause headaches, stomach aches, etc, and dealing with those issues in return cause depression. He said he does not want to be that type of dismissive doctor, blaming one thing for everything else.

That's why he's ordering a spinal tap to check for MS. He examined me and said I have too many varying neurological signs and even if the spinal tap comes back negative he's likely going to send me to Emory's MS clinic just to be sure, and to get a second opinion. I asked him what other conditions might be responsible for my symptoms. He said there are many conditions that share similar symptoms. He also said many take years to fully show enough symptoms to get an accurate diagnosis. So patience is important if we want accuracy. He also said if the neck is causing all the tremors & headaches it would be great (knowing the why for sure), but he has doubt's. So we wait... πŸ™πŸŒΌ

Mar 23, 2015 2:41 PM

Well Flappsy you got a little good news he will listen to you and not pigeon hole you. Y'all wish me luck I'm on my way to my Neuro appt. at 3:00pm. Hope we can figure out what's going on . I have had problems using my rt arm all day it hurts, and shakes when I pick up any thing.

Mar 24, 2015 11:46 AM

FlappsyLady, I. Glad you have a doctor listening and wanting to be thorough. That's really good news. I'm glad you're seeing the ortho and I hope that your tremors are coming from inflammation in your cervical spine. If not, at least he's running other tests to see if he can get you a clear diagnosis.
Weezie, I hope your appointment at the neuro goes well and that you come back with good news... I'll be standing by for updates... You're in my thoughts.

Mar 24, 2015 6:57 PM

The Tizandine is helping the tremors and jitters. Or maybe those were from hunger, because when I suspected my blood sugar I made sure to not let myself go without food too long, and I've just realized I haven't had those in about 10 days. The tremors definitely responded to the meds, but its a bandaid. I need to know what's causing it all. And even though I'm not having tremors, I'm having sharp shooting, stinging, burning, tingling/numb sensations that are predominantly painful, from the neck to the outer three fingers. And both upper arms & shoulders feel like cement blocks, not to mention the headaches. Its almost 2 weeks before my Ortho appt but the pain is getting worse, if I use my hand. Its my right hand and I'm not an ambidextrous person! I'm clumsy...lol πŸ™ˆπŸ™‰πŸ™Š

Mar 24, 2015 8:38 PM

FlappsyLady, if the pain is getting worse rapidly, perhaps the ortho can get you in earlier??? It may absolutely be worth the try. Your tremors are better but the pain, burning, tingling, etc. is getting worse. I'm lucky that I AM ambidextrous but my handwriting looks like a child just learning to put pencil yo paper when I use my wrong hand. I, too, have severe issues with my cervical spine and it shoots down my arm(s) and the outer fingers go numb. Many times I can't even hold my tablet so I lay it on my lap. Then, from looking down (both with my eyes and head), I get a wicked headache. I hope you have a peaceful night's sleep and wake well rested. You will be in my thoughts and prayers. πŸ’•πŸ™

Mar 24, 2015 9:05 PM

AlwayZ, that's exactly what causes most of my headaches, looking down. I may check to see if they can. I'm sitting here with an ice pack all up my arm. Hope you have a good night too! πŸ™πŸŒΌπŸ˜΄

Mar 25, 2015 9:04 AM

FlappsyLady, I hope you had a restful night. I've been thinking of you and hoping that you are feeling better, even if just a little. When the cervical spine is messed up, there are so many things that feel bad because of it. The tingling in the outer fingers, the pain shooting down the arm. I
Sometimes get pains like someone's stabbing me with a knife. I'd give the world to just be pain free (or almost pain free) for an hour. I'd settle for 30 minutes. I
Can't remember what life is like with no pain. I get very sad because I just feel my life was not supposed to be like this. I was always out, was up for anything and loved to Go dancing, bowling, to the movies, BBQ, just hang out, etc. I don't even attend parties at my own home!! I go out, greet everyone, hang for about an hour and then I'm out.. I go back to my room, close the door to the world and that's it. It's depressing. My family doesn't get it and friends think that if I ignore it and just go out, I'll be fine. Oops!! Sorry, I went off on a bit of a tangent. This is about hoping that YOU had a peaceful night and how YOU are feeling today. You're in my prayers.

Mar 25, 2015 9:57 AM

Flappsy I hope you had as restful and pain free night as possible. Alwayz hope you did too, well let me refrains that I hope everyone had a good restful and free night as possible . Flappsy and Alwayz y'all was talking about y'all 's cervical pain the numbness, tingling run g down y'all 's arms from the shoulders. That's simular to what is happening to me right now. The back of my neck down to my shoulders down my arms the worst pain is at the top of shoulder and the muscle right below the shoulder on the inside of my arm down to hand and fingers. It is an excruciating pain and it travels on the inside of my arm deep numbing pain and tingling fling mainly my thumb and next 3 fingers. My Neuro told me to not be holding my tablet but lay it on something if I just can't do without it.Lol I am an ad I'd reader and I have a Kindle app on it so yes I feel like I can't do without it.I also watch movies on it. He ordered a MRI of my cervical for tomorrow morning, w/wo contrast. He thinks that the Syrinx has gotten larger and is pressing on my nerves. I also am having numbness and burning in my feet now. I am sorry I kind of went off on a tangent.I don't have the sharp and throbbing pain that y'all have I wish they could find out what's causing us to this. Oh he also told me I have tennis and golf elbows lol I have payed either one. He said use asprcream and hot rice packs on them.

Mar 25, 2015 11:56 AM

Weezie, I hope that you get the answers you need from the MRI you're having. My neck ha been operated on so many times, I have scars from the back of my head to the middle of my shoulders. My left shoulder joint is almost non-existent as it has rotted away and the same is happening to my right shoulder. I'm afraid eventually, they are going to have to operate to try to fix it. Ugh... That would be surgery number 29!!! I think it's funny that you said he told you that you have tennis elbow and you've never played... LOL!!! Hang in there. I hope you get the answers you need. You'll be in my prayers.

Mar 25, 2015 3:18 PM

AlwayZ its almost comical how much we have in common. If I didn't know better I'd say one of us is a missing twin! Lol

I'm sorry you're having a rough time. I do understand the feeling,"this was not suppose to be." I think of the wasted college degree and skills I learned, just to have a career late in life. It makes me feel sick. I think about the dreams my husband and I had for traveling to every US state, and now its all I can bear to drive to appointments or families homes. Its very hard not to get angry and depressed. I fight it with faith that no matter how bad it seems, something good has to come from it all.

Weezie, its very possible you have the same radiculopathy going on. They've done 2 surgeries on my neck from 4-7 and secured it with titanium plates & screws. The problems are above and below. If the radiculopathy is from the C2-3 area I'm screwed and will have to live with it. They've already told me they're not going there unless its life & death. If its from the C7-T2 area they may be able to do some surgical procedure for relief. I know I have facet stenosis, but I can't remember what level. My daily pain is always about a 6 since the ESI's for 2 years. Before that it was a8-9. And I'm afraid that's where I'm headed or worse if they don't do anything but more ESIs.

No joke, but at the doc appt there was a news story by Dr john lapuk about "text neck" being a widespread chronic issue. I guess now were all going to be told to give up our devices. Someone needs to create a tray that sets in your lap & holds your devices straight across from your eyes (no looking down), and then create a way to operate everything by a game system pad. Lol, I'd use it!

To answer y'alls question about resting... Not so much. I'm tired and sleepy now, but I just can't allow myself to go to sleep. When I get in bed and get still I not only have the original issues in the right arm & hand, its now in both arms & legs/feet. I did get my appt with the Ortho doc for next Monday, so I don't have to wait so long.

Just taking a day, an hour, a step, one at a time. Wishing you both & everyone rest to restore, strength to endure, and faith to keep pushing forward! πŸ™πŸŒΌ

Mar 25, 2015 7:02 PM

Sounds like you've been to hell and back again!!! I sure know how you feel. Sometimes you get angry, sad or depressed but it is true, we are strong, keep pushing forward and continue to live our lives. Now whatever opportunity we have to do something we truly love, we need to take full advantage of because we never know how we are going to feel on any given day to make plans ahead of time. (If I do make plans ahead of time, I get so nervous that I'm going to ruin the other folks time, i just don't go because I get so nervous, I actually get sick). I think what most people still don't realize what power the mind has over the body. If you worry enough, your going to feel worse. If you're able to relax, then it seems that there are times we can find some peace. I've been in such a fog all day and so tired that I don't even know if this makes any sense at all. I hope that the evening goes well for everyone and that you all get a restful night's sleep and wake feeling rested, have a bit less pain and are happy. I think that I'm going to have to take an early bed time. The day has been long, I've been dozing off and there is no point in fighting it. Perhaps I will finally get a decent night's sleep since I haven't taken a nap today. Blessings to you all for a peaceful night.

Mar 25, 2015 9:46 PM

I'm good enough OregonHS. I could be worse anyways. My left knee is giving me fits tonight. Its been buckling on me the past week, and darned if the right one hasn't done it twice this week too. I nearly fell in the parking lot because the right one buckled stepping off the curb, and that threw my balance off then the left one buckled. I hate to say it but I think they're going to have to remove that bone spur sooner than later.

AlwayZ, I could tell you about my real "year from hell" but like our family & friends reacted when it all went down, you'd be shaking your head no & trying not to laugh, all while saying "No way! You've got to be pulling my leg!" Maybe one day I will recount it, just for laughs. Hope you sleep really well, and everyone else too. I think we could all use a real good & peaceful nights sleep! Praying for those in the stormy weather tonight, may God keep you all safe!

Apr 04, 2015 10:48 AM

Omg... Here I go again, but worse. Woke up feeling strange. As I walked it felt odd, like heaviness and rubber legs. Hubby said I'm walking funny. Got up to go to kitchen, stumbled sideways and nearly fell but caught self on wall. Hubby brought cane to me. Then noticed both hands, tremors again. Feel like that all inside, trembling. Using 2 canes to keep my balance.

Apr 06, 2015 4:10 PM

Omg! Flappys they have to fine answers for you!! That is awful!

Apr 06, 2015 4:27 PM

Flappsy I hope they can find out what is going on with you. Sooner than later, before something happens to you. Will be praying for you

Apr 06, 2015 7:02 PM

OregonHS & Weezie, it was still going on yesterday but to much lesser degree. And today you can barely see any trembling. We had a reception Saturday for my hubby's nephew & wife, and besides being on 2 canes my hubby & future son in law were on both sides to help me. Its no fun when it strikes, and it comes out of nowhere. My hubby insists its the gabapentin. But if it were, wouldn't it happen every day?

The neurologist office called today to schedule my LP follow up. I see him next Tuesday. I sure hope he can tell what is going on!

Apr 18, 2015 8:57 PM

Woke up and got out of bed. As I'm rounding the foot to head up the hall I felt my body veer to the right. Every move I made resembling a turn, of body or just head, set my vertigo and imbalance off. Omg...just had this on the 4th!! Got my shower and realized my right hand had tremors again too, but much milder than last time. I finally took a Valium for the dizzy/vertigo spinning about noon, and a Tizanidine at 2 for the tremors. The tremors are completely gone, but if I'm not careful moving my body or head around the dizziness goes into full spinning vertigo until I get completely still again. Its like walking barefooted carefully over broken glass or hot coals! 😲 Well at least the tremors were much milder and cleared up sooner. I will be so thankful when they figure out what is causing all this. πŸ™πŸŒΌ

Apr 18, 2015 11:05 PM

I'm sorry Flapp
! 😞. It sure as hell won't give you any down time... Awaiting answers.

Apr 19, 2015 11:23 AM

I'm so sorry that you are going through this FlappsyLady. I know it must be scary not to know what causes that to happen to you. It is not fun when you have vertigo. I have found that the latest issue I'm having with the TMJ and my ear being all weird, I get dizzy and it's a very unsettling feeling. I have also noticed lately that almost every day, I could even be standing still and all of a sudden will almost fall over like I tripped on something. I have no idea what could be causing this.. I have always had great balance. When I didn't have all of these issues I ice skated, roller skated, skate boarded and most of all rode horses. Now, just walking is an exercise in keeping my balance and not falling over my own two feet. I hope they find resolution soon.... I am happy that the symptoms were milder than before but I pray to God that they are able to get you to the point where you have NO symptoms. All the best to you.

Apr 19, 2015 2:35 PM

It is very frustrating waiting. Got up this morning and made it through cooking b'fast (hubby strained back ystrdy). I bent over to give the dog his food and when I stood up... wham...Dizziness again! As I turned and walked away there came the spinning. I stopped and held the wall. Every time I bend over/straighten it happens like that. Then I can turn a corner from one room/isle etc to another and it happens. We are bfast, got dressed and headed to the grocery store and I noticed my right hand trembling again. My phone-med alarm went off and I deal zed I had 1-missed my 7am Tizanidine and 2-would be late for gabapentin. We finished shopping and both hands had tremors. When I got home I took the gabapentin and the tremors calmed way down. When my alert for Tizanidine went off I took it. The tremors are gone... So it can't be either of these two meds causing this, since they both help calm/stop the tremors. I'm still dizzy and I think maybe its my ears or neck. πŸ™πŸŒΌ

Apr 19, 2015 2:37 PM

"I deal zed" = I realized

"We are b'fast" = We ate b'fast

Apr 19, 2015 6:26 PM

Flappsy I am so sorry that you are having to deal with this, happening repeatedly to you. I have always had problems walking along then tripping for no reason. I am beginning to wonder if I have had this my entire life. I can get up from laying down and start walking going sideways, or just staggering along like I'm drunk. I hope they find out soon what's going with you, it is very scary when it is happening so much to you. The Gabapentin and Tizindine seems to be helping you. Maybe your Dr can increase the Gabapentin to several times a day.

Apr 19, 2015 6:45 PM

Weezie, he started me on 300 mg 3x a day, but it made me a zombie. He changed to 100 mg 3x day and told me to work up, even if I have to take it all at bedtime. I just got to 300 mg/bedtime this week. Sometimes I have to skip the 100 mg in the day, especially if I have to drive anywhere. What's really frustrating is having to call my husband home because it hits me, and I have a doctors appointment.

Apr 21, 2015 11:26 AM

Flappsy, I am so sorry you are going through this. I never suffered with dizziness until recently with the feeling of my ear being plugged and finding out that I have severe TMJ (Gee, surprise, surprise) and there is a narrowing of the ear canal. I have to say that when it is bothering me badly, my ear is so plugged I can't hear and that is when the dizziness happens. It is scary, makes me sick to my stomach and I hate it. I am glad the meds stop the tremors and that you are getting relief. I hope you are careful about where you go when you are dizzy, I don't think grocery shopping is the place to be... LOL!! I would probably fall over and knock over a sales display which I did in a saddle shop years ago and I wasn't even dizzy at the time.. I laughed so hard with my friend I almost wet my pants but now, it's a different situation and not so funny any more. I hope you are better

Apr 21, 2015 2:40 PM

AlwayZ, sadly my dizzy/imbalance & spinning vertigo has not stopped more than a few hours (& while asleep) at a time since last week. As long as I move slower I can function through it, but sudden movements throw me off balance. And when I say slower, I'm talking tortoise! Lol And my ears are rarely ever closed off. But the cilia in the ears aren't moving right according to their tests. And I get the wanting to laugh at first, because my movements were like clownish, but its gone way beyond being funny. I still have to find humor daily, even if it's at myself, or I would go bonkers! Thanks for caring & sharing your story. πŸ™πŸŒΌ

Apr 21, 2015 4:09 PM

Flappsy I am so sorry that you are going thru this, I have no reckilexion sorry about spelling lol I think I need to go back to school lol. I understand what you mean about having to call your husband home to take you anywhere. It gets to be disgusting sometimes when your whole life you didn't have to depend on anyone to help you do anything. I think that's the hardest thing to except when your health gets to this point. Hope you feel better.

Apr 22, 2015 11:22 AM

Woo hoo! First day in awhile I'm tremor free & dizzy free! Thank the Lord!

Apr 22, 2015 12:46 PM

YAY.... I can't tell you how happy I am to hear that Flappsy!!! You have really had enough stuff going on lately and deserve this much needed break. God is kind and I know that between your faith, your willingness to help others even when you are feeling horrible and just being a really sweet lady, that you would get your reprieve. I pray that it lasts for you for more than just today. Don't overdo anything. Enjoy your new doggie, relax and just enjoy NOT feeling those sensations. You're in my prayers, as always. I am really very, very happy for you. Have a great day!!

Apr 22, 2015 9:39 PM

Thank you AlwayZ! Mayo clinic called today. They're booked up through June so I'm on a waiting list until they open the appointment books past June. She said I'll be seeing a Movement Disorder Specialist.

And while I wait I'm getting the pelvic floor therapy back on the calendar. And my knee that was on hold also, hopefully.

May 03, 2015 9:36 PM

Sounds like you have everything all lined up to take care of yourself. I hope that everything you set out to do goes smoothly and that you get the optimal results from the doctors and any meds they may put you on. I will keep you, as always in my prayers and send soothing and positive vibes to keep you strong and keep your spirits up

May 04, 2015 8:08 AM

AlwayZ, I hope to, but the doctors may not agree on the knee.

I'm starting the pelvic floor therapy Wednesday. But today I get a pudendal nerve block injection... Yikes! πŸ™πŸŒΌ

May 04, 2015 10:55 PM

If you're a male and get grossed out about women's cycles, read no further than the first paragraph. Just saying...

So I went for my trigger point injections (injx) today. This is the doc who gave me the gabapentin so I told him about not taking the med to see if it was making my tremors worse. Lo and behold my hands was slightly trembling. He said for sure not to take it until I'm evaluated for the cause of the tremors since avoiding the med has decreased the tremors. Good!

Now he tells me he is going to give me at least 4 trigger point injections, maybe more, and he may do a pudendal nerve block. I've never had a trigger point injx that I know of, and all nerve blocks I was asleep for. Son of a gun it hurt like my second child (when the epidural didn't work except below the knees) but 5-10x worse! I had to keep telling myself to breathe... Just like Lamaze 30+ years ago... Hee hee woo, hee hee woo! I didn't cry. I didn't cuss. But I think I told them "it was a man who made women suffer like this" in the midst of going "Oh dear God, please Jesus, Lord have mercy!" Then I remembered it was a male doctor giving me the injx in my pelvic floor muscles... Oops... Shhh! I was hurting so bad, even with the novacaine I lost count at five injx.

When he said he was done with the injx I thought "thank you Jesus!!" He said I had to wait 20-30 minutes then he would re-examine me. Everyone left and it seemed like ten minutes passed. Suddenly every time I moved my head everything was spinning... No it happened even when I moved my eyes sideways or up & down! I'm thinking,"Omg, I've got to call my hubby to come drive me home. And they're liable to come back and find me passed out on the floor! I best be totally still! " A few more minutes go by and they come ask how I am. I dare not say dizzy or they might pull out another needle, so I say, "I'm just fine."

Several more minutes tick by and... Whoosh... Where's the air condition? I'm sweating like a pig over a bbq pit! Then it hits me that the room has stopped spinning. Oh wait, I remember, he said besides the numbing agent he was injecting a steroid. That explains the dizziness & the hot flashes... The steroid affected my heart rate & blood pressure! Cool, I don't have to call my hubby and I'm not going to pass out on the floor when I stand up. Just a few more minutes and I can go home.

Doc comes back and re-examines, and the shots worked real good... No pain! He says im to follow up midway through the pelvic floor rehab, and I may need more injx. No, please no! Then he turned and tells the assistant "get her some wipes to clean herself up." And I'm thinking, huh? Omg, I bled like the stuck pig over the pit! Nobody told me that was going to happen! Nobody told me to stop my aspirin a week before! I haven't had a period since 1995... Why the heck didn't they warn me! Well thank God for my leaky bladder pads! And I drove home with instructions to take it easy until the bleeding stops.

I've been home since 3:00pm. Bleeding has almost stopped, I think. But I'm sweating horribly and I'm wide awake... It's now 11:50 pm & I'm usually asleep by now. I start the PFT Wednesday. I have no idea what to expect but it's retraining my pelvic floor muscles to release when they're suppose to and contract when they're suppose to... Instead of the opposite like they've been for a year. If this works there will be no more sudden sprints to a bathroom, or protective pads on chairs, sofas or car seats, or wearing leakage pads, or sitting in a position on a toilet while I try to breathe and relax in order to get my pee to flow. Oh please please please work, and no more shots! πŸ™πŸŒΌ

May 04, 2015 11:04 PM

Oh I forgot to mention the deep pelvis cramping that started up about three hours ago. Darn, if I didn't know better if sayi was about to have my period, that or delivered a baby. Those kind of cramps! It's going to be a long night. 😞

May 04, 2015 11:10 PM

Flappsy I am so sorry that it was such a painful ordeal. You have been through the ringer this year. I hope this works for you. I am so happy about your tremors stopping hope they are gone for good. Will be praying for you.

May 05, 2015 11:57 AM

Flappsy, I am so sorry for that horrible ordeal you had to endure... I had trigger point injections a couple of times and it hurt so badly that i DID pass out. I started to sweat, told the doc I felt funny, he said, almost done and BOOM, over I went... LOL!!!.. I hope that this is the end of your problem of having to run to the bathroom, etc.... You are in my prayers and I will keep my fingers crossed that this therapy is the thing that helps you.

May 05, 2015 2:56 PM

Thanks! I had a rough night and I'm still in my PJs. My left side is some better but not the right. I've had two series (6-8) of pelvic floor muscle treatments for the rectal muscles, when I couldn't make it to the bathroom in time. Now its to retrain the urinary muscles because I can't get my flow started and to continue easily. I'm 53 and its doubtful that I won't require treatment in the years to come, but I'm praying for no more injections! The closest pain I ever remember being comparable to what they did with the injx was when I broke my leg in 5th grade and they let me sit in the ER 4 hours before setting the bone, all without any pain relief.

As for the tremors they come randomly, sometimes days apart and then others all day long. Grasping objects increases them (fork, hairbrush, steering wheel, etc). And the dizziness is ever present, rearing its head when I turn my head to either side and especially if I turn a corner from one room to another. Sometimes it happens just from moving my eyes. Its like everything moves in slow motion to catch up to where my eyes &/or body is. I have to try and make all movements slower to help reduce or avoid it. They are both much improved without the gabapentin.

I posted my experience on the trial for others to be aware of what could happen. I have a droid ultra. I really wish they had the bugs out so I could use my phone only. As it stands I can't use either app (CMP or trial) on my phone right now... It freezes up! I'll be taking a few days-weeks off until they get the CMP app refunctioning as before the trial. Its taken me over an hour to make this one post via my tablet. Hope everything goes well for you both and others! Chat with you sooner than later I hope! (Via repaired cmp app by phone). πŸ™πŸŒΌ

May 27, 2015 5:06 PM

Omg... I had tremors so bad from 1:45-5:20 pm so badly my arm and shoulder (front & back) is so drawn and tight and hurts so badly I'm ready to cry. They started in February at one every 5-9 days, then every 3-4 days. Now they are daily and mostly mild but occasionally moderate, especially if I use my hand. When hold or grasp any object it makes them worse. Today the tremors are off the charts. Mayo really needs to call soon! πŸ˜₯πŸ™πŸŒΌ

May 27, 2015 6:00 PM

I've had tremors in my arms and shoulders, what you're describing reminds me of some things I've dealt with. The tremors were at one point thought to be early onset arthritis (runs in the family) but nope. Good luck getting an appointment!

May 27, 2015 7:19 PM

Ferretbandit, thank you. My neurologist nor Ortho doc have an answer. Other med professionals who have witnessed it all say it's nerves. I'm being referred to Mayo's movement disorder clinic, but they're backlogged through June with a waiting list. Emory isn't taking new patients. My hand, arm & shoulder is locked in a permanent cramp. When it happened today it was the worst ever. I thought of a Parkinson's patient and a Cerebral Palsy patient with no control of their limb. I don't know what it is but its worsening. πŸ™πŸŒΌ

May 27, 2015 8:42 PM

Flappsy hopefully the will get you in soon. I haven't had any tremors but the numbness is back in my left arm, I was sitting in my Dr's office when it happened,I told him about it and all he said was you need to see your Neurologist about that. I thought what the heck am I seeing him far !!! He told me when I started seeing him he knew all about Syringomyelia, he said yesterday he doesn't know. Go figure. Well I hope y'all all have as good nite with plenty of sleep pain free as much as possible.

May 28, 2015 10:33 AM

That sounds typical...doctors have amnesia too!

May 29, 2015 1:19 PM

I had to take the dog to the vet. Due to the recent fibro flare and lack of sleep last night, it took me 4 hours to get my breakfast, shower, dry my hair, get dressed, find his paperwork and get out the door.

My dog rides well in the car and he loves all people. He even seems to like cats and all dogs smaller than him. Dogs bigger than he is...not so much. He weighs 15 lbs. This slightly heftier pug came from the back snorting & hassling as pugs do. Suddenly my 15 lb Jackapoo developed a 60-70 lb Rottweiler/Bulldog attitude. Lol It was quite cute and funny at first. But after 10 minutes of fighting to hold & control him the amusement wore off, for me and everyone else in the waiting room. I was never so relieved when everyone else was gone just so I could put him down! By the time I got back home 1 1/2 hours later my hand was trembling so bad I was unable to use it to get in my house. I hurt all the way up my arm into the shoulder region & neck, front and back.

I let my husband know from now on he takes the dog. I feel like I was just in a war with the dog. My husband said, "He's just being Fiesty Fido the protector.". My answer, " more like Bully the intimidator! "

Now I get to drive two hours for a doctors appt. I'm guessing my Saturday isn't looking to well, except recuperating. I know I'm in bad shape compared to least year but especially 5 years ago. But a 15 lb dog can whip me down? Come on...really? Geez! πŸ™πŸŒΌ

May 31, 2015 10:36 AM

Flappsy, This is the first I've gotten to read these posts. I am so sorry that you are going through all of this. I know waiting makes it all the more horrible because you need and want answers and help and you have none. I have a question. If your husband gently massages the area that is tight and trembling does it offer any release or does it cause more pain. I ask because this morning my left arm was in spasm from my shoulder all the way to my elbow. I had to go down and have my Mom massage the shoulder, bicept and arm with biofreeze to help make it stop. It took over a half hour and hurt like hell when it was being done but the spasm is less although the pain level has remained the same. I was just curious. My prayers are with you, Flappsy. Hang in there, it will get better (not gone, but better). sending you hugs.

May 31, 2015 10:49 AM

Thanks AlwayZ! My hubby isn't a good massager, he squeezes and goes to fast to help relax. If anything he causes more pain and stress... Lol! Just the thought of a message from him makes me cringe. Massages just aren't his forte, but when he works with his hands outside he always getting hurt... He's got clumsy hands, but a heart of gold! πŸ’Ÿ I use to love going to get a message but with to many tender points that hurt to touch I no longer go. πŸ™πŸŒΌ

May 31, 2015 11:06 AM

I'm sorry, Flappsy.. I was hoping that maybe there would be something that could give you some relief. I understand that when you're hurting if you have someone who is heavy handed massage you it brings more pain than not. I, myself, was going to get my NYS Massage Therapist License but my hands and everything else got to painful to continue. I still do give massages from time to time to people I care about that need one but I can't do it for very long. I know something else that can be very soothing is for someone to brush your hair. (gently), or even just to sit next to you and run their fingers through your hair. My very best friend will ask me to rub her shoulders or play with her hair if she has a migraine and I will do what I can. Usually when I'm done, she is feeling much better.

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