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.

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Hi I'm in ireland. I am also with same symptoms..mine started in February...

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@cud1916

Hi I'm in ireland. I am also with same symptoms..mine started in February...

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Let's hope others chime in who experience this terrible symptom and can offer support that helped. My prayer are with you and we fight this terrible symptom.

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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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Hugs! I have the internal shaking, head and arms tremors and sensory issues with my nerves. Oh the pain! Not sure what meds to take :(. I will conquer this with my neurologist when I’m done with headaches, gastro issues and cognitive.

I think I drive my doctor as crazy because it’s always something. My doctor wants me to get everything worked on at once … my head can not even fathom so many doctor appts.

I do try to “lean” into doing activities…it’s so tough. I do a virtual support group through Vanderbilt. I highly recommend getting in the wait list … it helps so much. Another item that has helped me is a book ( I got it on audio because of my shaking) Clearing The Fog by Dr. Jackson. It’s so helpful as it gives you help on how to talk with your doctor.

Hang in there and if a feeding tube is going to help … I’m all about that. I have the opposite problem…I gain weight and I’m not sure why. I keep track of my intake, go to the nutritionist and still gain!

This is a very unpredictable illness.

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Sorry about all the struggles =/ It seems the response to gabapentin, the other antispasmodics and neuromodulators (aka antidepressants) are very individual, especially for people sensitive to medications. They’re easily accessible and effective for many chronic pain conditions, which I suspect is why many physicians offer them. But not everyone tolerates them well.

LDN is known for improving brain fog and cognitive function, but it’s also been researched for pain, as an anti-inflammatory, and for GI symptoms. It’s possible it still may help, and it’s much lower risk of side effects. Same with guanfacine and NAC—they can help cognitive function. You’re right and it may not be direct, but it could be like a tide that lifts all ships, so to speak. There’s also much less risk of side effects for any of the above (except maybe the guanfacine based on what I’ve read so far) as compared to gabapentin.

Have you considered options other than medications? For treatment of chronic pain conditions, medication interventions are limited and not risk free. Sometimes other interventions like CBT, mind-body practices, and especially working with a pain specialist or chronic pain rehabilitation program can make a huge difference because they can provide more guidance and support for the “biopsychosocial” approach to pain known to be most effective.

Could you see a gastroenterologist or establish with a GI dietician to help you expand your diet with things you could tolerate to help maintain your weight? This helped me very much with appetite loss and unintentional weight loss. My GI care team prescribed Kate Farms Standard 1.0 formula, which can be taken orally. It doesn’t have the additives of an Ensure and it’s GI friendly, and often covered by insurance. But if you need the feeding tube, that’s okay too. It doesn’t have to be permanent.

I’m not trying to pepper you with questions, just trying to brainstorm options that may be within reach.

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@emo

Sorry about all the struggles =/ It seems the response to gabapentin, the other antispasmodics and neuromodulators (aka antidepressants) are very individual, especially for people sensitive to medications. They’re easily accessible and effective for many chronic pain conditions, which I suspect is why many physicians offer them. But not everyone tolerates them well.

LDN is known for improving brain fog and cognitive function, but it’s also been researched for pain, as an anti-inflammatory, and for GI symptoms. It’s possible it still may help, and it’s much lower risk of side effects. Same with guanfacine and NAC—they can help cognitive function. You’re right and it may not be direct, but it could be like a tide that lifts all ships, so to speak. There’s also much less risk of side effects for any of the above (except maybe the guanfacine based on what I’ve read so far) as compared to gabapentin.

Have you considered options other than medications? For treatment of chronic pain conditions, medication interventions are limited and not risk free. Sometimes other interventions like CBT, mind-body practices, and especially working with a pain specialist or chronic pain rehabilitation program can make a huge difference because they can provide more guidance and support for the “biopsychosocial” approach to pain known to be most effective.

Could you see a gastroenterologist or establish with a GI dietician to help you expand your diet with things you could tolerate to help maintain your weight? This helped me very much with appetite loss and unintentional weight loss. My GI care team prescribed Kate Farms Standard 1.0 formula, which can be taken orally. It doesn’t have the additives of an Ensure and it’s GI friendly, and often covered by insurance. But if you need the feeding tube, that’s okay too. It doesn’t have to be permanent.

I’m not trying to pepper you with questions, just trying to brainstorm options that may be within reach.

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Thanks to everyone who has responded - love ya all!

The reason I was thinking Gabapentin is because I'm told it can also help with sleep and it retrains the brain to forget and let go of past Trama so the body can heal itself.

At the onset of not feeling well 3 yrs ago I broke a few toes and within days I started to get nerve pain in the foot. This was the same foot that I shattered when I feel down a flight of stairs and required putting humpy dumpty back together again to due many broken bones in the ankle. During the healing process I developed nerve pain and was put on Gabapentin for a few months which fixed it right up and never a problem again. Well the broken toes I mentioned were on the same foot. Before I knew it, months later I developed nerve pain in my left side of breast, sternum and right side. Fast forward to today and I have over 40 LT Covid terrible and unbearable symptoms.

So right now I don't know if I should start Gabapentin, Guanfacine, Naltrexone or maybe even an anti-depressant i.e., Duloxetine which is for anxiety and pain. I have the Rx for Guanfacine, Naltrexone and Duloxetine, but would need to ask for the Gabapentin. I've been taking Zoloft for a few weeks and feel worse. Plus, I also have that darn right flank pain and the groin hernia. My gallbladders was checked via CT, ultrasound, MRI and HIDA and all is good. Oh, and lets not forget the damn chalazion which they did 2 surgeries on that won't go away. I truly believe LT Covid doesn't allow our bodies to heal no matter what comes our way.

Docs are also confused because they don't know how to deal with this and especially LT Covid.

I trust the folks on this forum more than any Doctor I have seen to date.

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Oh ok, I think I was speed-reading and didn't realize somehow you were considering gabapentin vs. other options.

If it were me (which it's not lol, so take this with a grain of salt), I would just go with what I feel most comfortable with--whether that's according to risk of side effects or what you feel makes the most sense for symptoms. And I'd probably choose one intervention at a time because doing multiple together might make it harder to determine which is helping, and the side effects could add up.

I know that duloxetine can be helpful with chronic pain and depression/low mood. But it's also known for potentially causing discontinuation syndrome. I have not heard for gabapentin helping to let go of past trauma. But if you had a positive experience with it before and you know you tolerate it, that could be a place to start. I think it just depends on what you're most comfortable with, but I also know that's not always an easy decision to make.

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@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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Hi Summerof42,
I'm so sorry to hear of all of your physical problems! That must be terrible! I've never experienced anything like you have. However, when I first went through menopause I had similar internal shaking and my hands shook. I couldn't even write at times. I found drinking orange juice or milk helped calm the shaking down. So did plain yogurt.

Prayer does work; even though sometimes it takes a long time! I had terrible migraine headaches for two years. I was in the emergency room every month for a shot of Demerol. The rest of the time just to keep the pain down the doctor had me on Meprobamate and Tylenol with Codeine #4, four times a day. I lost weight and just couldn't eat much. My mom and I were praying constantly and 9 specialists couldn't solve my headaches! Then God finally answered our prayers and the headaches stopped. I've never had another headache of any kind and that was 50 years ago! (I'm 77.) So, keep praying. Your prayers will work. I will say a prayer for you and I'm sure the good people on this forum will pray for you also. In this awful world as it is today, it's all we've got!
Best wishes!
PML

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@pml

Hi Summerof42,
I'm so sorry to hear of all of your physical problems! That must be terrible! I've never experienced anything like you have. However, when I first went through menopause I had similar internal shaking and my hands shook. I couldn't even write at times. I found drinking orange juice or milk helped calm the shaking down. So did plain yogurt.

Prayer does work; even though sometimes it takes a long time! I had terrible migraine headaches for two years. I was in the emergency room every month for a shot of Demerol. The rest of the time just to keep the pain down the doctor had me on Meprobamate and Tylenol with Codeine #4, four times a day. I lost weight and just couldn't eat much. My mom and I were praying constantly and 9 specialists couldn't solve my headaches! Then God finally answered our prayers and the headaches stopped. I've never had another headache of any kind and that was 50 years ago! (I'm 77.) So, keep praying. Your prayers will work. I will say a prayer for you and I'm sure the good people on this forum will pray for you also. In this awful world as it is today, it's all we've got!
Best wishes!
PML

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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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