Hi,
I have several issues, one is shaking when I wake up, and I can not fall back asleep. I have a bad back and been told I have Fibromyalgia. Neuro has put me on Gabapentin to control my nerves, but do not understand the shaking. It sometimes stops when I get out of bed, but then feel a little jittery throughout the day. I can't take it anymore. I went to the ER a few weeks ago, and they did a brain scan. Showed nothing.
Good morning! Have you been tested for thyroid issues? I have the same problem but when I sleep or lay down. I have tremors...
Hi,
Yes, it's under active and I take Levothyroxine. Been taking it for years, and blood tests are always normal. I have herniated discs in my back, but the docs don't seem to think my back is causing it. Even though it started right after severe back pain. I always have throbbing and pulsating all over, this all mostly occurs at night when laying down at night in bed. Then, I wake up shaking.
I am so sorry! I hope you find answer soon! I’m glad that Doctors have ruled out the major stuff though.
I have herniated discs in my C4 and C5. Spondyliosis. I have also symptoms of fibromyalgia, from muscle twitching to muscle pain, tremors upon sleeping or waking, vision vibration, memory impairment, brain fog etc. Have you noticed any of these - like for example vision vibration in the periphery vision? My neuros told me these are anxiety related and/or conversion disorders.
Wow this post is very accurate on what I've been going through.
A week ago i was diagnosed with Fibromyalgia after having a very bad month and nervous breakdown. I'm twitching and waking up with tremors. Had an EEG and MRI and all was okay and im on Gabapentin. but the twitching and shaking is scaring me
Me too, scared to death. I know being scared makes it worse. Is the Gabapentin working for you? I've been on 300Mg twice daily for almost a month with no relief. I also have to take Xanax twice a day, or I couldn't survive. I can only sleep a few hours, and I wake up shaking, and my mind will not let me fall back to sleep. Are you in any pain?
I was told waking up and shaking is normal for people with anxiety and is not scary which put my mind at ease. Gabapentin is working for me so far but it works gradually. I think you are expected to raise the dose but ask your doctor first. Dont be afraid it will all pass. I was told my pain was all psychosomatic as well
I have a bad back, so I know my pain is real. Been in physical therapy, but nothing is working. Don't feel like doing anything during the day, and the nights are horrible because I know what I'm going to wake up to. This is the worst.
I couldn't sleep at all for a long time and if I did I would wake up several hours later shaking which caused me to freak out even more. I was given valium and it didn't even work. I think what put my mind at ease is that it's normal for people who suffer from anxiety to wake up with tremors. They say that tremors only at night or upon waking have no neurological basis.
Hi,
I have never heard of BFS, had to google it. How long did it take for yours to go away, or did it? This is disrupting my entire life. I am paralyzed with fear. My doc is out of the country for the holidays, so can't get info on increasing my dose of Gabapentin. Thank you so much, finding someone that can relate is great. Everyone else thinks I'm crazy. No can relate unless you've experienced it.
I think once I've accepted and trusted the doctor and managed my anxiety it started to gradually decrease. It takes time. But once you accept and stop focusing on it you'll feel better. I thought I was going crazy and no one really understood me, worst feeling ever.
Another important advice, please try to avoid googling your symptoms. Google made me 1000x worse. I know it's hard, I'm still recovering from my breakdown.
Find a good family doctor, I did that and she helped me a lot whenever I had any concern
I have a hard time trusting doctors, and because I have so many symptoms it's scary. I have symptoms to so many disease's. I know googling things is adding to my anxiety, but I'm so desperate to find the answer. Afraid that what ever I have is going to kill me before they figure it out.
I know how hard it is, it's really scary. I hope we find peace within ourselves. It's frustrating
Me too, thank you!!!
I suggest you drop valium and other medicines. I felt such an improvment when i did so. Valium damages the brain and so do antidepressants. Let time heal you! After a while you will not be scared anymore. And that will ease your anxiety, easing so the pain and other stuff. Sleep may continue to be fragmented and symptoms will travel from one place to the other, but in general they will be lighter.
It's a typical case of BFS. Do not worry. These things take time. I hope you'll feel better soon
Feel free to message me if you have any other questions 
Hi,
Sorry to bother you, as I know you have your own issues. I had the worst night, can't sleep. Still twitching and having muscle spasms.
Having some burning and muscle issues in my face, and my head just doesn't feel right. Have you experienced anything like this. I'm shaking inside right now because I'm scared to death. My brother died of Parkinson's, and starting to wonder if these are the early signs. Any information would be a great help.
Thank you.
Post traumatic stress disorder plays a role in this also. My close friend died some months ago before the symptoms started to gradually go into chronic phase. I cried for 10 days, so I know it is not smth trivial. My neuro told me the same. Not to mention that the scare these symptoms give us start PTSD on their own. As far as I know PD is not smth hereditary or genetic. So don't worry for that. BFS is far more common and anxiety is like the disease of the century. Once you let time heal you, by not googling any more and just stopping thinking about it, you can have a clue that it is not a neuro-degenerative disease. Those kind of diseases don't get better with time. On the contrary. So try to get better by getting better, by not thinking of it. It will heal you, which will lower your anxiety, which will heal you. You need to break the vicious cycle of anxiety with a virtuous cycle of calm.
I have herniated discs in my C4 and C5. Spondyliosis. I have also symptoms of fibromyalgia, from muscle twitching to muscle pain, tremors upon sleeping or waking, vision vibration, memory impairment, brain fog etc. Have you noticed any of these - like for example vision vibration in the periphery vision? My neuros told me these are anxiety related and/or conversion disorders.
Hi,
I have 3 herniated discs in my lower back,plus a new injury to my upper back. Not much is showing on an MRI for my upper, just spinal stenosis. I have tremors at night and when I wake, have throbbing and pulsating all over. I take Gabapentin 3 times a day, plus xanax. Non of this is working anymore, I'm in pain and can't sleep or eat. Without these meds it would be much worse. I've been to 2 neuro's and my primary with no answers. My primary said I had Frobromyalgia. I went to a Rheumatologist last week and he said I did not have Fibro. He is testing me for some other things. I do not know what to do anymore, suffering daily. My life and work have stopped, can't even clean my house anymore. So I have just about everything you mentioned. I'm also getting pain and nerve issues in my face with is effecting my left eye muscle.
Please tell me what you are doing to control pain and symptoms, I'm suffering everyday. Some days I feel like I'm going to die.
Forgot to mention brain fog and lack of focus and concentration.
Really hard to do almost anything now, I get frustrated just thinking about doing something. You don't think our bad backs are causing these issues? I'm at the end of my rope, the lack of sleep is making it worse. I do not really sleep, I pass out from the medication. So, I wake up not feeling rested and don't want to get out of bed. Any advice would be appreciated, I'm desperate.
Thank you!
Fibromyalgia is hard to diagnose and is under a bigger umbrella called sensitivity syndrome. Basically nerves are more sensitive thus they amplify signals. So you have pain, tremors, lack of coordonation of thoughts. Also do you have disturbed sleep? I think quitting medicine or slowly reducing it until stopping it can help you underastand that the source of all are your thoughts. Also try not to think of it so much. No google, no over worrying. Let it be smth. you get used to and it will reduce its intensity.
Yes, I can't sleep. I only pass out from the medication, but it's not a restful sleep. When the medication wears off, then I wake up not feeling rested. So, I do not want to get up because I'm exhausted.
If I stop taking the medication the pain, shaking and throbbing will be worse. So afraid of that, don't know what to do. I do know I have to get off the Gabapentin, because I have no energy or drive to do anything. I feel like my life is over. Do you take anything for yours?
My suggestion is to trust your neuro. Or see another one if you are not sattisfied or trusting him/her. Did your neuro say it is fibromyalgia? Did he rule out parkinsons? Then if you get a second neuro's diagnosis, it can help you ease your mind. Easing your mind is the crucial step. Also try to cut gluten, sugar and dairy. The immune system may be reacting to these.
I do not trust the Neuro's I saw, all they did was check my reflexes.
Did not do blood work or anything. The first one said "you'll be fine". I asked if he saw Fibro, and he said you can not see Fibro. So, I did not get an answer (Jerky response). The second put me on Gabapentin and then left town, called several times because it was't working. It took a week for a call back, so I will not be returning to him. I asked during my appt about Fibro, but never got an answer. I also asked about Parkinson's, because my brother died at 58 from it. He said he doesn't see Parkinson's at this time. I I read that a Rheumatologist was the one to diagnose Fibro, I went that week. He said he doesn't treat Firbo but can diagnose it, he doesn't think I have that though. He ran some blood work, I have a follow up tomorrow. I have pain all over now, my ankles are even swelling. Where are all the real doctors, no one wants to help anyone anymore.
It is hard with this. Bloodworks do not help much. You need another neuro. Just to reasure you.
Also there is a support group for BFS in facebook. Benign fascicilation syndrome support group.
The first one said "you'll be fine".
If he says so, then be fine. You can affect your wellbeing.
How are you? Look maybe you are upset and worried and trusting your neuro is not easy, since there is no easy and quick resolve. You need to let your mind calm for a long time before seeing results. But for me, trusting my neuro was one of the best things I have done. They are obliged under law to tell you the truth and will get heavy fines and legal repercussions if they don't do so. If he says anxiety, it is not that he doesn't care, it is because anxiety can do inimmaginable things and he knows better than us these things.
I'm having a very bad day, this is the worst so far. I went to the
Rheumatologist the other day, he ran some tests but didn't show anything. He would not take me off the Gabapentin, he said to followup with another Neuro. I'm in so much pain today, and my achilles tendons are swollen. I can't do anything, my neck, back and ankles are killing me. Do not know what to do. I have never asked for pain medication, and now I can't get it. I called the the Rheumatologist and they said they can not prescribe pain medication. I called my primary and they won't prescribe anything without seeing me, and nothing I can do. Here it is Friday, and I have to suffer. I don't see the new Neuro until next Wednesday.
I feel like the Neuros are not spending enough time with me, and not focusing and listening to my issues. All they see is my anxiety because I'm in pain and scared to death. I don't know how I will move forward in my life with so much all over pain. Don't know how I can get better or fix any of this.
Thank you for asking how I am, and checking in. That means a lot from a stranger lol.
You said you don't take anything, how do you manage your pain?
The pain was never so strong for a long time. My symptoms come and go. The only constant thing recently is my eye vibration and fixed eye floaters. But that might be an eye problem on its own. But calming down can reduce pain. Also try to sleep alot and stay in bed even when you cannot sleep. If you drink coffee quit it for one or two days. It will help you sleep due to the withdrawal effect.
I have been staying in bed longer, because I can not sleep and I'm exhausted. Right now my anxiety is through the roof, and I do not know what to do. I can't work or focus, I feel like my life is over. I feel like something is attacking my nervous system. I've worn out my support system, no one wants to talk to me anymore. I'm running out of options. I live alone, and I'm scared.
First things first. Find another neuro. Another opinion could help you be sure and understand that your anxiety is doing this. Do something that you like. Have a beer, a coffee. Yes sometimes a coffe helps reduce anxiety. You hve to find what works for you. Love yourself and understand this shall pass. Also it could help reconnectig with God and your faith. Be easy on yourself.
This is a big problem, there is NOTHING that interests me anymore. The numbness and pain in my feet are getting worse, so is the pain in my neck. I have throbbing all over, I feel like when you have pain and numbness like this it doesn't go away or get better. Afraid that it's affecting my head, and nervous system.
I have an appt with new neuro on Wednesday.
Can't eat or clean my house today, have to struggle with everything I do. I can never get my mind off these issues, I constantly feel everything. I'm 55, but don't feel like that is old enough to have these issues.
I wasn't brought up in a religious environment, but I do talk to God. Don't know if it helps. I lost my sister,dad and brother almost 10 years ago. They all died within a 1 1/2 of each other. Sister-stage 4 breast cancer, Dad-Heart & Lung disease, Brother-Parkinson's. They all suffered a horrible death. I thought I was one step ahead because I took better care of myself, but I guess I didn't. So I'm afraid my time is coming. I'm alone now, I do everything myself and have been really hard on my body in the last 10 years.
I talk to them also, asking for help and guidance. Have't seen any signs, don't don't what to look for or feel.
Do you really think when things get this bad they can still pass?
Thanks for the help and support.
Of course they can pass. Did I tell you? My neuro told me it can be ptsd. With all the trauma yiu had it can be normal. Just say to yourself: I am fine. It will pass. It will take its time but it depends on how able you are to calm down. But at least you will calm down when you finallay understand it is not a deadly disease.
I will try me best, thank you!!
How are you recently?
Hi,
Not much change. Went to the new Neuro last week, like her much better than the other 2. She changed my meds and sent me back to physical therapy. Different physical therapist also. Still don't have too many answers, have to wait and see if the new meds work. Hope physical therapy helps this time, it didn't last time.
Thanks for checking on me.
How are you?
Ups and downs. Best thing is not to worry.
When anxious do you self-harm?
Keep active when having an anxiety attack. 
Does anyone get stomach pains when anxious 
Heightened anxiety due to tonsilitis does anyone else's anxiety get worse when they are poorly?
Daily feelings of something bad may happen and I may be needed to be rushed to the Hospital