Has anybody ever heard of anything like this?

Posted by sturner62 @sturner62, Sep 23, 2023

I’m kind of new to Neuropathy. Anyways, about three months ago I hurt my back at the gym, went to my doctor. He told me to take a muscle relaxer. I went home took one 15 minutes later I was pins and needles head to toe. Ended up in emergency room. It’s been hell ever since. At night when I fall asleep, I can feel strange sensation going down my sciatic nerve on my left side when it gets to the bottom of my foot, it moves over to the other side and goes down the right side. Every night it takes a little bit more away from me makes my feet really sore and hard to walk on. Takes about three hours for me for my feet to feel normal then it just repeats the cycle one night I was laying in bed and pulled on my knees and thought I pinched a nerve in my back, when I did this that sensation stopped for two days, but I had like resonance felt like it was coming from my lower back, but it would not leave there from that spot which feels like my spine L5 . my legs felt great for two days and they felt like they were healing. I slept for two days every night solid my wife couldn’t believe it. I couldn’t believe it. Nothing was going down my legs and my feet were starting to heal. I had no nerve damage before this. I never had diabetes. My blood pressure is perfect. No underlying health conditions after two days I was laying in bed and I could feel a tingling in my hip and I could feel that things slowly going down my left leg took about an hour for it to get there and then it felt a tingling on my right hip and then it’s slowly starting to go down my my right leg. And that awful feeling and damage in the morning was back. Everything that I read about this says the damage is caused to the nerves in your feet from blood vessels or something like diabetes, causing it or something. something screwed up with my peripheral nerves. It’s causing the thing that goes down my legs that I can’t control and it’s wrecking my legs. Went to my doctor and had an x-ray of my lumbar everything looks OK. Went to my chiropractor. He said I irritated the nerves. I must’ve stretched them, and that’s what caused what I thought was a pinched nerve the nerves in my glutes swelled up and hurt, it definitely blocked that thing that was going down my legs . my doctor thought I was crazy when you have this disease everybody thinks you’re crazy . It’s all in your head it’s not when I went to my Doctor Who thought I was crazy for a physical shortly after this, he gave me an EKG because I told him the night before my heart beat didn’t feel right now I have a fib from this disease do you believe me now he seems like he does. . I had an irregular heartbeat. It lasted about 12 hours and then it seems like it resolves itself. I got an appointment with the cardiologist soon. Hopefully I’m good .I was trying to get in at Mass General Hospital in Boston. I can’t get an appointment till February 7, 2024. i’ve been going to a Hospital in Worcester because I can’t wait. That’s a story in itself. I got hooked up with a neurologist he’s not helping me very much very much. I got this in a very unusual way I was poisoned by a muscle relaxer. The only time this thing gets me is when I fall asleep or about to fall asleep when I get really tired because I haven’t slept for three days because if I stay up it doesn’t come on unless I’m really tired something to do with the sleep mechanism that’s attached to this thing it sucks, I told this to my neurologist he looked at me like I had two heads. Has anybody ever heard anything like this? Hopefully I’ll still be able to walk by the time I get to that appointment in Boston.

Interested in more discussions like this? Go to the Neuropathy Support Group.

..... may not be of interest but an anti diarrhea med both spouse and i have to use as radiation damage to bowel; so pharmacies buy the cheapest pills they can get esp, when generic. we had a change in the manufacturer, and of course now, they just use initials for the company! so i had two bottles of SAME main ingredient, info sheet did not say what non medicinal ingredients were so went on Internet. I listed the non medicinal contents of each one and they were DIFFERENT. Even the "dye" to colour the pills blue were different names... this is horrible putting "stuff" into your body . As is said, we may not be "allergic" or sensitive to the main ingredient but its these numerous colouring agents, oil type stuff to ensure the pills can easily be taken out of the molds they are made in, etc. etc. etc. I know there is no solution. Its like buying apple pie made by one bakery and apple pie from another; they both use apples but one could have butter the other margarine; one white sugar the other brown - you know what I mean... 🙁

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p.s. we shouldn't have to spend time searching on Internet - the medicinal and non medicinal ingredients should be listed on the bottle, box or package IMO However, some of the names of the added chemicals aren't even easy to pronounce let alone know how they might affect our bodies: even ingredients on candies now are half a page! Ugh !!!

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Hi @sturner62 I BELIEVE EVERYTHING YOU ARE SAYING.

So sorry to hear what you're going through. Unfortunately, many doctors that can't figure out what's wrong then turn the tables on the patient stating it's a mental issue. I believe everyone that describes bizarre side effects because I've had so many that are not listed on the package. I'm not sure I believe the drug manufacturers are being honest about side effects though.

When I was 21, a neurologist yelled at me for wasting his time when I claimed pins and needles then sudden numbness all over that didn't go away. He thought it sounded like BS and said I was taking him away from real patients. He sent me for EMG/NCS tests just to prove there was nothing wrong with me. The tests came back abnormal confirming what I was telling him. He never apologized, but was now interested in my case and doing more tests. I walked away. It was a rare hereditary neuropathy that wouldn't be diagnosed until my son had it, needed nerve transposition surgery, and was genetically tested at 21. A lot more than numbness happens with this.

THERE IS HOPE FOR YOU:
I want to give you hope that your issues may all eventually go away. I've had terrible and bizarre reactions listed in the drug literature to so many meds that weren't. Some were because of my neuropathy, my nerves are easily injured, and I'm also missing some liver enzymes needed to properly metabolize many meds so meds sit in my system too long and become toxic to me. Some doctors will say the half life is only x hours so the med can't still be causing the issue. Yes, it can because the med did some damage that now the damage needs time to heal.

Took Multaq for afib and it immediately gave me all the symptoms of a heart attack for 3 days non-stop, scary. I stopped the med on day 3, but continued to have muscle weakness, fatigue and shortness of breath with any activity for the next 3 months. It was horrible. Good news is it did go away eventually.

Eye dilation for routine eye exam -- was feeling bad from it by the time I left the office. Ruined the next 6 months of my life with massive fatigue, balance issues, shortness of breath. I couldn't walk 10 feet without wanted to sit and cry from the fatigue. Too tired to sit or stand up. I tried antibiotics, prednisone -- didn't help. They tested my lungs after 4 months and they were still only at 60% capacity, but couldn't explain it since my lungs were clear. I felt like I was dying. Good news is it did go away gradually in months 5-6.

Novacaine injection at dentist -- face stayed number for 9 months. Must have hit one of my easily damaged nerves with the needle. At least it eventually went away.

Strong antibiotics for diverticulitis -- caused me to permanently lose my sense of taste and smell 6 years ago. My neurologist told me those senses won't ever come back. Such a loss. I've now read those antibiotics can cause nerve damage and I'm prone to it.

I was given some topical cream to put on my toe to soften a callous. One little bit caused my heart to start beating erratically (as some other meds and cleaning chemicals also do). I'm afraid to take anything.

Lots of meds and supplements cause massive pins and needles throughout my body within minutes and have lasted anywhere from hours to two weeks after just one dose. It has always gone away though. It makes it hard to treat my medical conditions.

Your muscle relaxant (Flexeril brand name) I took for whiplash 30 years ago ironically caused the most severe calf cramps I had ever experienced. I couldn't even drive because the cramps would just hit randomly all day long. I also had other issues with it so never again.

I could go on and on. Some of us are just very sensitive to meds (or possibly fillers) for various reasons. I avoid meds as much as possible and like others have said, doctors are very frustrated by that. I'm frustrated too. I tell them if you had lived in my body for 64 years and experienced so many devastating reactions, you'd be afraid to take them too. The doctors are not the ones that have to deal with the consequences of side-effects.

I'm praying that your issues go away along with your back injury.

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I also was diagnosed with spinal stenosis, bulging disks & a narrowed spinal cord. I’ve had a couple of incidents where I’ve needed to reach for something, once under the bed. So I crouched down and reach forward. Then I couldn’t get up, excruciating pain from the mid spine down. I couldn’t move. The first time I simply passed out. I had to call for someone to come lift me up to standing position.
Frankly, I don’t know what happened. Pinched nerves don’t usually make you lose complete control over your body.
I use a TENS unit for times that I have for swelling & aggravated nerves.
I would love to not have to try medication. As you’ve said, the side effects can be worse than the problem.
I wish you luck.

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@rowun4

I also was diagnosed with spinal stenosis, bulging disks & a narrowed spinal cord. I’ve had a couple of incidents where I’ve needed to reach for something, once under the bed. So I crouched down and reach forward. Then I couldn’t get up, excruciating pain from the mid spine down. I couldn’t move. The first time I simply passed out. I had to call for someone to come lift me up to standing position.
Frankly, I don’t know what happened. Pinched nerves don’t usually make you lose complete control over your body.
I use a TENS unit for times that I have for swelling & aggravated nerves.
I would love to not have to try medication. As you’ve said, the side effects can be worse than the problem.
I wish you luck.

Jump to this post

Thank you

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@californiazebra

Hi @sturner62 I BELIEVE EVERYTHING YOU ARE SAYING.

So sorry to hear what you're going through. Unfortunately, many doctors that can't figure out what's wrong then turn the tables on the patient stating it's a mental issue. I believe everyone that describes bizarre side effects because I've had so many that are not listed on the package. I'm not sure I believe the drug manufacturers are being honest about side effects though.

When I was 21, a neurologist yelled at me for wasting his time when I claimed pins and needles then sudden numbness all over that didn't go away. He thought it sounded like BS and said I was taking him away from real patients. He sent me for EMG/NCS tests just to prove there was nothing wrong with me. The tests came back abnormal confirming what I was telling him. He never apologized, but was now interested in my case and doing more tests. I walked away. It was a rare hereditary neuropathy that wouldn't be diagnosed until my son had it, needed nerve transposition surgery, and was genetically tested at 21. A lot more than numbness happens with this.

THERE IS HOPE FOR YOU:
I want to give you hope that your issues may all eventually go away. I've had terrible and bizarre reactions listed in the drug literature to so many meds that weren't. Some were because of my neuropathy, my nerves are easily injured, and I'm also missing some liver enzymes needed to properly metabolize many meds so meds sit in my system too long and become toxic to me. Some doctors will say the half life is only x hours so the med can't still be causing the issue. Yes, it can because the med did some damage that now the damage needs time to heal.

Took Multaq for afib and it immediately gave me all the symptoms of a heart attack for 3 days non-stop, scary. I stopped the med on day 3, but continued to have muscle weakness, fatigue and shortness of breath with any activity for the next 3 months. It was horrible. Good news is it did go away eventually.

Eye dilation for routine eye exam -- was feeling bad from it by the time I left the office. Ruined the next 6 months of my life with massive fatigue, balance issues, shortness of breath. I couldn't walk 10 feet without wanted to sit and cry from the fatigue. Too tired to sit or stand up. I tried antibiotics, prednisone -- didn't help. They tested my lungs after 4 months and they were still only at 60% capacity, but couldn't explain it since my lungs were clear. I felt like I was dying. Good news is it did go away gradually in months 5-6.

Novacaine injection at dentist -- face stayed number for 9 months. Must have hit one of my easily damaged nerves with the needle. At least it eventually went away.

Strong antibiotics for diverticulitis -- caused me to permanently lose my sense of taste and smell 6 years ago. My neurologist told me those senses won't ever come back. Such a loss. I've now read those antibiotics can cause nerve damage and I'm prone to it.

I was given some topical cream to put on my toe to soften a callous. One little bit caused my heart to start beating erratically (as some other meds and cleaning chemicals also do). I'm afraid to take anything.

Lots of meds and supplements cause massive pins and needles throughout my body within minutes and have lasted anywhere from hours to two weeks after just one dose. It has always gone away though. It makes it hard to treat my medical conditions.

Your muscle relaxant (Flexeril brand name) I took for whiplash 30 years ago ironically caused the most severe calf cramps I had ever experienced. I couldn't even drive because the cramps would just hit randomly all day long. I also had other issues with it so never again.

I could go on and on. Some of us are just very sensitive to meds (or possibly fillers) for various reasons. I avoid meds as much as possible and like others have said, doctors are very frustrated by that. I'm frustrated too. I tell them if you had lived in my body for 64 years and experienced so many devastating reactions, you'd be afraid to take them too. The doctors are not the ones that have to deal with the consequences of side-effects.

I'm praying that your issues go away along with your back injury.

Jump to this post

Thank you. The nervous system seems to be very elusive. I never knew this before this happened to me.

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If this happens mostly at night you may want to try magnesium glycinate before bed. It is safe and calms the nerves. It has been a lifesaver for me.

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@californiazebra

Hi @sturner62 I BELIEVE EVERYTHING YOU ARE SAYING.

So sorry to hear what you're going through. Unfortunately, many doctors that can't figure out what's wrong then turn the tables on the patient stating it's a mental issue. I believe everyone that describes bizarre side effects because I've had so many that are not listed on the package. I'm not sure I believe the drug manufacturers are being honest about side effects though.

When I was 21, a neurologist yelled at me for wasting his time when I claimed pins and needles then sudden numbness all over that didn't go away. He thought it sounded like BS and said I was taking him away from real patients. He sent me for EMG/NCS tests just to prove there was nothing wrong with me. The tests came back abnormal confirming what I was telling him. He never apologized, but was now interested in my case and doing more tests. I walked away. It was a rare hereditary neuropathy that wouldn't be diagnosed until my son had it, needed nerve transposition surgery, and was genetically tested at 21. A lot more than numbness happens with this.

THERE IS HOPE FOR YOU:
I want to give you hope that your issues may all eventually go away. I've had terrible and bizarre reactions listed in the drug literature to so many meds that weren't. Some were because of my neuropathy, my nerves are easily injured, and I'm also missing some liver enzymes needed to properly metabolize many meds so meds sit in my system too long and become toxic to me. Some doctors will say the half life is only x hours so the med can't still be causing the issue. Yes, it can because the med did some damage that now the damage needs time to heal.

Took Multaq for afib and it immediately gave me all the symptoms of a heart attack for 3 days non-stop, scary. I stopped the med on day 3, but continued to have muscle weakness, fatigue and shortness of breath with any activity for the next 3 months. It was horrible. Good news is it did go away eventually.

Eye dilation for routine eye exam -- was feeling bad from it by the time I left the office. Ruined the next 6 months of my life with massive fatigue, balance issues, shortness of breath. I couldn't walk 10 feet without wanted to sit and cry from the fatigue. Too tired to sit or stand up. I tried antibiotics, prednisone -- didn't help. They tested my lungs after 4 months and they were still only at 60% capacity, but couldn't explain it since my lungs were clear. I felt like I was dying. Good news is it did go away gradually in months 5-6.

Novacaine injection at dentist -- face stayed number for 9 months. Must have hit one of my easily damaged nerves with the needle. At least it eventually went away.

Strong antibiotics for diverticulitis -- caused me to permanently lose my sense of taste and smell 6 years ago. My neurologist told me those senses won't ever come back. Such a loss. I've now read those antibiotics can cause nerve damage and I'm prone to it.

I was given some topical cream to put on my toe to soften a callous. One little bit caused my heart to start beating erratically (as some other meds and cleaning chemicals also do). I'm afraid to take anything.

Lots of meds and supplements cause massive pins and needles throughout my body within minutes and have lasted anywhere from hours to two weeks after just one dose. It has always gone away though. It makes it hard to treat my medical conditions.

Your muscle relaxant (Flexeril brand name) I took for whiplash 30 years ago ironically caused the most severe calf cramps I had ever experienced. I couldn't even drive because the cramps would just hit randomly all day long. I also had other issues with it so never again.

I could go on and on. Some of us are just very sensitive to meds (or possibly fillers) for various reasons. I avoid meds as much as possible and like others have said, doctors are very frustrated by that. I'm frustrated too. I tell them if you had lived in my body for 64 years and experienced so many devastating reactions, you'd be afraid to take them too. The doctors are not the ones that have to deal with the consequences of side-effects.

I'm praying that your issues go away along with your back injury.

Jump to this post

I really appreciate you taking the time to tell your story. I too have been having reactions (severe itching all over my body, which makes me feel like I am being electrocuted) to over-the-counter vitamins, including iron, which I can no longer take, calcium, which, unfortunately I need for my bones, multivitamins, and the B vitamins are out of the question. This all started after I had Covid. It is very frustrating. I am meeting with an allergist this week to see what he has to say. Hopefully there is someway to get these things in me. Perhaps it is fillers in the vitamins. We’ll see.

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I can relate to many things on this thread. I have side effects to many drugs. I had sciatica off and on in my 50’s and 60’s. Now at 73? Seems like everything hit at once. I believe Covid brought everything out that was in my body: hereditary diabetes, hereditary Glaucoma, Hashimodo’s Disease and fibromyalgia along with the neuropathy and Long Covid. Many of these problems have similar issues so they overlap. Beta blockers in my eye drops were particularly bad for side effects. I had such a hard time with neurology and fibromyalgia pain at night I would cry and walk the floors. Gabapetin didn’t work. I started seeing an Osteopath who really helped me. He understands that my body is very sensitive to medication and supplements. I was prescribed methadone in very low dose which let me sleep at night. Then I was taken off that and prescribed Baclofen (muscle/nerve relaxer without side effects for me) in low dose which really helps me. Using stretch bands and 2 lb dumbbells for my shoulders and arms (fibromyalgia) and treadmill for my legs and feet and knees (both fibro and neuropathy) and stretching. It’s a slow process and I have my up and down days but I’m better. Hope you find a doctor who listens to you and works on a plan for your entire body like my Osteopath. Hang in there you will find what helps you!!

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I forgot to add the Susan’s CBD Salve which comes in push up stick. Use it on my fee t for neuropathy and muscle pain too. It really works. Pricey but lasts. Worth it to me. You can get it online

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