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

@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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Have you looked anything up on the Cleveland Clinic website? It's one of the sites I check in with along with the Mayo Clinic.
I used Lunesta several years back. The best sleep I ever had.

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@jrg200911

???
A wearable that trains your body to get more sleep and stress less. Apollo Neuro’s touch therapy technology was developed by neuroscientists and physicians to help calm your nerves and clear your mind, melting away stress using soothing vibrations for better sleep, relaxation, and focus. Tested across thousands of users in the clinic and in the real world, Apollo wearable users experience 40% less stress and anxiety, up to 25% increase in focus, and can gain up to 30 more minutes of sleep a night.
???

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Interesting find. I have not heard of this product or how it help the central nervous system, but did a little poking around. Here is the direct company site and info on the product:

The Apollo Wearable for Sleep -

- https://apolloneuro.com/?gad=1&gclid=EAIaIQobChMIt8Xd77GTgAMVIefjBx0IZgiBEAAYASAAEgJhN_D_BwE

Here is a review from Harvard University:

Harvard Health Ad Watch -

- https://www.health.harvard.edu/blog/harvard-health-ad-watch-can-a-wearable-device-reduce-stress-202109222601

And, it is sold on Amazon, of course! Here is a direct link:

Amazon.com -

- https://www.amazon.com/s?k=apollo+wearable+device&hvadid=607570624946&hvdev=c&hvlocphy=9004739&hvnetw=g&hvqmt=e&hvrand=12314607707125702445&hvtargid=kwd-1410301831571&hydadcr=15184_9871950&tag=googhydr-20&ref=pd_sl_70u5f4gqkp_e

@jrg200911, do you wear the Apollo Neuro device? If so, in what ways does it most help you?

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@rwinney

Interesting find. I have not heard of this product or how it help the central nervous system, but did a little poking around. Here is the direct company site and info on the product:

The Apollo Wearable for Sleep -

- https://apolloneuro.com/?gad=1&gclid=EAIaIQobChMIt8Xd77GTgAMVIefjBx0IZgiBEAAYASAAEgJhN_D_BwE

Here is a review from Harvard University:

Harvard Health Ad Watch -

- https://www.health.harvard.edu/blog/harvard-health-ad-watch-can-a-wearable-device-reduce-stress-202109222601

And, it is sold on Amazon, of course! Here is a direct link:

Amazon.com -

- https://www.amazon.com/s?k=apollo+wearable+device&hvadid=607570624946&hvdev=c&hvlocphy=9004739&hvnetw=g&hvqmt=e&hvrand=12314607707125702445&hvtargid=kwd-1410301831571&hydadcr=15184_9871950&tag=googhydr-20&ref=pd_sl_70u5f4gqkp_e

@jrg200911, do you wear the Apollo Neuro device? If so, in what ways does it most help you?

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No, I do not have the Apollo Neuro device. I just happened upon the information about it while scrolling. I did see there are a few clinical trials in progress, though none complete that I could find.

It seems interesting and logical to me. (But, I am no scientist!) I'm curious if anyone here may have any experience with it?

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I have had similar chest and nerve pain issues. Tried various remedies including NAC and LDN. None provided any real relief. I have refocused my approach to learning to live with it, doing what I can to be comfortable. I know that my pain is not immediately life threatening, so when it flairs up, I lie down, do breathing exercises, see if I can nap. But I may need to do this a few times a day. I was told nerve pain can go away over time, but slowly. Your symptoms sound more severe. I’ll be sending you positive thoughts.

On the diet, people recommended all different ones to me. What actually worked was eating, even if just a few bites, whatever I wanted! Better to get something down even if not ideal.

Take care.

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@btconnolly

I have had similar chest and nerve pain issues. Tried various remedies including NAC and LDN. None provided any real relief. I have refocused my approach to learning to live with it, doing what I can to be comfortable. I know that my pain is not immediately life threatening, so when it flairs up, I lie down, do breathing exercises, see if I can nap. But I may need to do this a few times a day. I was told nerve pain can go away over time, but slowly. Your symptoms sound more severe. I’ll be sending you positive thoughts.

On the diet, people recommended all different ones to me. What actually worked was eating, even if just a few bites, whatever I wanted! Better to get something down even if not ideal.

Take care.

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Hello, @btconnolly, welcome. Thank you for contributing to the conversation about nerve pain. I admire your refocused approach of trying to do your best to learn to live with your symptoms since medications were unsuccessful in managing them. I'm sorry for that, but you bring up a good point by mentioning how your pain is not immediately life treating. The Mayo Pain Rehabilitation Center teaches a mantra of:
"hurt does not equal harm"
regarding chronic pain versus acute pain. This concept helped me come to grips with the fact that I was safe, just really hurting, and because meds didn't cut the mustard enough for me either, I shifted focus on learning self-management tools such as moderation of activity and balanced rest. What other ways have you learned to manage symptoms? How do you find distraction from symptoms?

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@rwinney

Hello, @btconnolly, welcome. Thank you for contributing to the conversation about nerve pain. I admire your refocused approach of trying to do your best to learn to live with your symptoms since medications were unsuccessful in managing them. I'm sorry for that, but you bring up a good point by mentioning how your pain is not immediately life treating. The Mayo Pain Rehabilitation Center teaches a mantra of:
"hurt does not equal harm"
regarding chronic pain versus acute pain. This concept helped me come to grips with the fact that I was safe, just really hurting, and because meds didn't cut the mustard enough for me either, I shifted focus on learning self-management tools such as moderation of activity and balanced rest. What other ways have you learned to manage symptoms? How do you find distraction from symptoms?

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Thank you for saying that about “Hurt does not equal harm.” I haven’t done any of Mayo’s pain rehab programs, but I live in Illinois and am a patient at the Shirley Ryan AbilityLab (as they say, “the #1 rehabilitation hospital in the world ha), and learning the differences between acute vs. chronic pain, both in how pain signaling differs and more importantly—what we can do to about it and how we can continue to live our lives had been invaluable.

It’s something I wish I could better share or explain with folks here without sounding too “woo woo” as my sister says >_< It’s just so hard to encapsulate!

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@emo

Thank you for saying that about “Hurt does not equal harm.” I haven’t done any of Mayo’s pain rehab programs, but I live in Illinois and am a patient at the Shirley Ryan AbilityLab (as they say, “the #1 rehabilitation hospital in the world ha), and learning the differences between acute vs. chronic pain, both in how pain signaling differs and more importantly—what we can do to about it and how we can continue to live our lives had been invaluable.

It’s something I wish I could better share or explain with folks here without sounding too “woo woo” as my sister says >_< It’s just so hard to encapsulate!

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@emo Great word choice! It is difficult to encapsulate all that goes into a mindset shift and being able to approach chronic pain from a different direction. Once I got over the hump of accepting "chronic" vs. acute and learned the tools to apply, I moved forward. Granted, it takes time, perseverance, mental fortitude, and an investment of time, it does help and work.

First, I'm ecstatic you've found a rehabilitation program that is helping you. Thank you for sharing the info. Second, the name says it all...ABILITY. It's so hard to focus on our abilities when we are so engrossed in the downward spiral chronic symptoms present.

#1 rehabilitation hospital in the world?!?! Haha - I beg to differ, but the value that any reputable, well-run pain rehab program brings to folks is irreplaceable in my book. Here's the hospital's website for inquiring minds -

Shirley Ryan Ability Lab
https://www.sralab.org/
Please don't be shy to share your rehabilitation experience and learnings on Connect. It's not too "woo woo", you never know when it may help someone. Do you experience internal trembling and nerve pain, or do you have other symptoms? Are you comfortable sharing the ways you manage flares?

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