Internal trembling/shakiness, nerve pain - Gabapentin? Please help

Posted by summerof42 @summerof42, Jul 13, 2023

3 yr sufferer. .. i can't go on like this. I continued to worsen each and every month due to lack of medical support, knowledge and proper care and treatment.

As of a few months ago the internal trembling/shakiness in the upper chest developed. Its unbearable! Also, terrible pain in the sternum and nerve pain throughout the body as well as crawling sensations under the skin, burning tongue. I'm now down to 89 lbs they want to insert a feeding tube. Also suffering from extreme anxiety, Xanax was helping for about a yr, but does nothing now and I tried most SSRI's.

To anyone suffering the same, please chime in and if you found relief with any medication(s)? Possibly Gabapentin? I know some folks are using Naltrexone and/or Guanfacine, NAC, but it seems that works for brain fog or energy, which is not my problem.

Sending love and hugs to all. I pray our Dear Lord answers our prayers.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@summerof42

@emo - ditto on the duloxetine which is why I'm afraid to try it. i would be more comfortable with trying Gabapentin. In researching it does say it helps with sleep anxiety as well.

This is my sole reason for posting my questions - I'm curious what anxiety/depression meds have helped others, since as we know, LT Covid sets anxiety/depression on fire to the max!

Hoping others will chime in what they're taking and has helped. I believe someone mentioned Cymbalta.

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Thanks for clarifying. Cymbalta is the brand name for duloxetine, so it's the same medication.

My father takes Prozac at a very low dose (2.5 mg) because he's very sensitive to medication. He hasn't had any side effects at that dose. We tried to get him to 5 mg, but it was too activating for him, as he has some symptoms of anxiety. His neurologist actually recommended Paxil instead, because I guess it can be "better" for anxiety, but we were not comfortable with the higher risk of side effects.

The way it was explained to us, SSRIs or SNRIs (Cymbalta) are better tolerated, especially in older or more sensitive individuals than older antidepressants. And the response is very individual, so it's hard to say which is "better" than others. In our situation, choosing between Prozac and Paxil, Prozac won out because Paxil is known to have the most anticholinergic effect of all the SSRIs. We were just not comfortable with the risk when other options were available. My dad is already extremely sensitive to medications, and older adults are more susceptible to the side effects of anticholinergic medications (dry mouth, urinary retention, constipation, confusion) and associated with cognitive decline.

Hopefully others can give you insights as well.

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@summerof42

@emo - ditto on the duloxetine which is why I'm afraid to try it. i would be more comfortable with trying Gabapentin. In researching it does say it helps with sleep anxiety as well.

This is my sole reason for posting my questions - I'm curious what anxiety/depression meds have helped others, since as we know, LT Covid sets anxiety/depression on fire to the max!

Hoping others will chime in what they're taking and has helped. I believe someone mentioned Cymbalta.

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Before starting duloxetine (Cymbalta) do some research and possibly talk to a pharmacist. I read it's extremely difficult to stop taking due to severe withdrawal issues. Gabapentin has the same problem, but not as severe. I tried it once before bed and didn't help me sleep at all so I quit taking it. I've been taking 50-100mg Trazodone to help me get to sleep. If anxiety keeps you from falling asleep, I found an audio program on YouTube that helped me relax. It's by a hypnotist--Paul McKenna, Sleep. (You need ear buds.)

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@ripley, thanks for chiming in. The sleep issues seem to be better lately. I just take a Xanax. I also found that clonzepam which is in the same family works wonders - but of course all addicting.\, but a wonderful drug and anxiety, etc.

Right now, my biggest problem high on the scale severe anxiety / depression, with worry, fear, because I have so many things going on. I look in the mirror and see that darn chalazion below my lash line, had two surgeries, all to no avail and it won't go away. It's uncomfortable beside ugly. I also have a hernia in the groin area, spoke with the surgeon yesterday and he cannot do surgery until I gain some weight back (down to 90 lbs) at 5'4" I eat like mad, but can't gain the weight back which I'm sure is due to all the anxiety / depression. All this on top of so many other LT Covid symptoms is just unbearable and I can't get support anywhere because of the lack of knowledge around this disease.
I've worsened so much the last few years due to the absence of proper care and treatment. Now the internal trembling is the worse and I also have the overall "I want to crawl out of my skin" sensation and feel terrible.

Long story short, I need the right medication. I also put a post under anxiety and depression meds and hoping others will chime in what Rx seem to work. You mentioned Trazadone which I tried about 3 yrs ago, and it did set the mind in motion to relax and fall asleep, but it was short-lived and within 2 yrs I was up and couldn't fall back asleep again

I'm taking 50 mg of Zoloft, but I know it's not the right med. Docs like to use SSRI's because of less side effects. My physc is great in willing to prescribe anything that she feels will help, but problem is what?

Funny thing is a couple of yrs ago when I weaned myself off the Xanax because it was not working, I asked my primary for something to sleep - please! I mentioned a Rx that worked back in the 80's - Flurazapam. It worked great, I started to feel so much better and slept well. I tried to get it again the company stopped making it!

So I wish I could find a med that works similarly. She mentioned Nortriptyline which appears to be more for pain, and also mentioned Amitriptyline. Years ago one Doc mentioned Effexor, but that's an SSNRI which are very difficult to wean off of.

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You may also be interested in these 3 related discussions:
- Post COVID: Anyone experiencing internal vibrations?
https://connect.mayoclinic.org/discussion/internalvi-ratio-upon-waking/
- What helped to reduce my internal vibrations
https://connect.mayoclinic.org/discussion/what-helped-to-reduce-my-internal-vibrations/
- Post Covid internal vibrations & hair loss
https://connect.mayoclinic.org/discussion/post-covid-internal-vibrations-hair-loss/

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@law59

Hi to all. First I hope this is received in kind light intended as I just had another brain mri where you are not suppose to move yet I have my random spasms, stabbing pains with lovely electrical jolt feeling/falling/ spinning- head to toe . .
Common issue seems to be our bodies are so easily exhausted/overstimulated that our nervous system and cellular level needs resetting. Literally setting alarms for consistent nutritional small meals every couple of hours, closing eyes and doing absolutely nothing couple of minutes each hour with other time minimal task pacing and journaling to determine your particular triggers whether food, hours off your feet needed, sleep or not☹️, brain stressors like phone calls, appointments, bill paying. . . Literally only doing one thing a day and slowly adding each week to determine your “activity “ threshhold and not overdo creating constant setbacks and daunting symptoms like shortness of breath from just a wheelchair ride to doctor appointment. Breathing exercises, like meditation and box breathing, seem to really help reset nervous system and maneuver the anxiety our bodies symptoms create. Know its not easy to adapt to these extreme daily challenges so hopeful these techniques can help create a more manageable daily life to enable the slow and steady healing for our full recovery🌈 Best to all!

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Hello there @law59, such insightfulness you bring to the central nervous system and the importance of resetting. You explained the tools of moderation and modification quite well in your examples. These are tools the Mayo Pain Rehabilitation Center teaches. What stood out to me as being wise and helpful were setting alarms for small meals every couple of hours, rest breaks, journaling (you say triggers - also recommended for gratitude or stress release), graded exposure = adding activity or sensor triggers slowly and paced to help determine threshold and find plateaus, not overdoing or as the Mayo Pain Rehab calls it, "Push/Crash", self-care and calming strategies like meditation and proper breathing techniques...my goodness the list goes on!

Here is a conversation you may be interested in -

Moderation and Modification - How can it help your chronic pain? -
-
https://connect.mayoclinic.org/discussion/moderation-and-modification-how-can-you-benefit/

- You really nailed it with your guidance and support for members like @summerof1942, and @cud1916. Many thanks for paying forward what helps you manage daily life despite chronic challenges. We often can not control the wind, but we can adjust the sails - mindset can be one of our best tools.

What techniques have you found helpful for sleep hygiene? What do you find helpful for distraction from symptoms?

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@rwinney

Hello there @law59, such insightfulness you bring to the central nervous system and the importance of resetting. You explained the tools of moderation and modification quite well in your examples. These are tools the Mayo Pain Rehabilitation Center teaches. What stood out to me as being wise and helpful were setting alarms for small meals every couple of hours, rest breaks, journaling (you say triggers - also recommended for gratitude or stress release), graded exposure = adding activity or sensor triggers slowly and paced to help determine threshold and find plateaus, not overdoing or as the Mayo Pain Rehab calls it, "Push/Crash", self-care and calming strategies like meditation and proper breathing techniques...my goodness the list goes on!

Here is a conversation you may be interested in -

Moderation and Modification - How can it help your chronic pain? -
-
https://connect.mayoclinic.org/discussion/moderation-and-modification-how-can-you-benefit/

- You really nailed it with your guidance and support for members like @summerof1942, and @cud1916. Many thanks for paying forward what helps you manage daily life despite chronic challenges. We often can not control the wind, but we can adjust the sails - mindset can be one of our best tools.

What techniques have you found helpful for sleep hygiene? What do you find helpful for distraction from symptoms?

Jump to this post

Hi @rwinney. Thank you for those kind words and just hoping to help others maneuver. My sleep was all over the place and tried the suggested routine bed time with no electronic device prior and the comfiest sheets to my touch. As so many, waking up repeatedly or hard to fall asleep from varying symptoms, doing box breathing and finding/saying my mantra “Ive got this” few times to calm the systems. If that doesnt help enough, Ive found patience looking for something joyous/low key in bed until sleep happens. For me watching music videos of my favorite music as long as not too busy, loud, and lowest light possible. Of note, like myself, seems many develop or have worse apnea from covid and evaluation by sleep specialist appears to be more available with patient specific treatment offered through most healthcare systems . Hope this helpful and healing journeys to all🌈

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@rwinney, others - What I find very, very helpful are free and incredible sleep stories by DAN JONES, He's well known for medication, stories and hypnosis. His voice, the spaces in between and in particular the stories he tells are like pure medicine and you will find you never make it to the end because you fall asleep, and I am one who cannot fall asleep and lay in bed for hours and it's the only thing that has helped me.

Two of my favorite are 1) Guided Sleep Meditation Time for Love and 2) Healing Sleep Story - worry less, enjoy life more. He has so many and I never go to bed without.
I wish I could fly him into my country (I think he's Australian or English) and have him hypnotize me!

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@summerof42

THANK YOU SOMUCH PML for your prayers! BTW, my name is Rose. Bless you. Power in prayers. I continue to pray every day. I love our Dear Lord Jesus, life, people and so grateful for my many blessings and pray God he hears my prayers and my needs.

I'm so glad to hear your migraines have stopped. I know they can be brutal. I was experiencing them a few months ago as well. About 2 yrs ago when they did a spinal tap, along with many, many other tests, I had worst migraine every 24/7 for over a week. Apparently the Doctor used too big of a needle and drew out to much spinal fluid. I thought my head would explode!

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Hi Rose,
What a nice name! I love roses! I have some in my garden. My husband and I will continue to pray for you as I'm sure others are also. We love God and Jesus too!

That's too bad that you had migraines also! And, all from the doctor using too big of a needle! I don't know what caused my migraines but I know God cured them. A Jewish doctor that I was seeing for the migraines stated in my record that my migraines were cured by God. I thought that was so nice! He also put the Bible out for reading in the waiting room!

You stated you weighed 89 lbs. Could some of your medications be taking away your appetite? That's what was happening with me.

I wish you the best and our prayers will continue for you!
PML

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@pml

Hi Rose,
What a nice name! I love roses! I have some in my garden. My husband and I will continue to pray for you as I'm sure others are also. We love God and Jesus too!

That's too bad that you had migraines also! And, all from the doctor using too big of a needle! I don't know what caused my migraines but I know God cured them. A Jewish doctor that I was seeing for the migraines stated in my record that my migraines were cured by God. I thought that was so nice! He also put the Bible out for reading in the waiting room!

You stated you weighed 89 lbs. Could some of your medications be taking away your appetite? That's what was happening with me.

I wish you the best and our prayers will continue for you!
PML

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@summerof42 , @pml
Yes, prayer!
I, too, love the Lord. I wrote in my journal just yesterday my gratefulness for God's everlasting faithfulness - to all generations. I am currently reading a great book by Timothy Keller*, "Walking with God Through Pain and Suffering". I would highly recommend it. Currently reading the chapters on Job. Anyway, I am drawing nearer to the heart of God knowing God, in turn, is drawing nearer to mine.

*Timothy Keller, previous church planter and pastor of Redeemer Presbyterian in NYC, recently died at 72 after a battle with pancreatic cancer...

I am finding benefits of Metoprolol for managing my racing heart and Wellbutrin for anxiety and depression. LDN was not the elixir for me, so axing that.

After another doc visit yesterday, we are going a different route. I have been prescribed a low dose of female hormone replacement therapy (Estradiol/Estrace). Hoping for a reduction in the body flushing and sweats, and leveling of mood. I believe after almost three years of PASC chest pain we are determining it is not cardiac related. So, I have been referred to a Gastroenterologist to have my "scopes" done. I am due for a colonoscopy anyway, so I figure why not have a looksee from both ends...

Hang in there! God's strength in weakness. Cling to Him even in His loving embrace that carries you and will never let go.

My personal website of poetry:
http://www.evangelicalpoetry.com

http://www.evangelicalpoetry.com/aboutme/

Prayers!

[NIGHTWATCH]
Jody R Goode © 8/9/1995

Blessed is the soul who stands the nightwatch...

In the quiet of the night she waits upon the One who called her name.

He presents Himself to her in a way only the spirit can comprehend...
...He sets her feet to dancing and her heart to rejoicing.

"I am in the presence of the King! Here am I Lord ~ please send me!"

Speaking wisdom to her innermost parts,
she knows her calling and responds to His command.

Dressed for battle ~
she pours out her heart at the foot of the throne for those she loves...
...and even those she does not know.

A pleasure in His sight, He hears her cry,
and answers in the place where He dwells.

With a single word, He gathers a mighty Host and sends them out,
to war over those for whom she's labored,
to protect them from harm at the enemy's hand.

The prayer of a righteous warrior has accomplished much.

The Heavens celebrate in its triumph...
...The Enemy trembles in his defeat.

Guarded carefully in the refuge of His Wing,
she rests as the new dawn approaches.

Blessed is the soul who stands the nightwatch...

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