1. < Neuropathy

Neuropathy Pain at Night: What helps?

Posted by Donald @donfeld, Jun 8, 2020

THC or marijuana for me relieves pain from neuropathy. It works every time takes a few minutes and a few puffs of smoke and it comes it down for some crazy reason that makes this drug so popular.

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

Mentor
John, Volunteer Mentor | @johnbishop | Sep 12, 2022
In reply to @linda818 "I do this every night before bed and it seems to calm my “hot/pins and needles”..." + (show)
@linda818

I do this every night before bed and it seems to calm my “hot/pins and needles” feet down before sleeping.

Jump to this post

Welcome @linda818, I see that you joined a few months ago and this is your first post. I'm glad to see that you have connected with @mcd123 and have found relief with soaking your feet in ice water for a bit before sleeping.

Do you mind sharing a little more about your neuropathy diagnosis and how long you've had it?

REPLY
Debbie | @dbeshears1 | Sep 12, 2022
In reply to @maggie1960 "@johnbishop Hi John, You may have seen my reply to @amandajro about my night time ritual..." + (show)
@maggie1960

@johnbishop
Hi John,
You may have seen my reply to
@amandajro about my night time ritual that helps me get more comfortable. I mentioned there that I put lotion on at least two or three times a day, as that seems to help with the irritation my skin has from fabric.
You asked about pain medications. I am into my 5th week of gabapentin, and 3rd week of amitriptyline. After being on the gabapentin for a couple of weeks I had to shame my neurologist (literally shame her) into giving me something for pain. Her suggestion was to take ibuprofen or tylenol. I didn't hesitate to tell her that those don't make a dent in the pain. (I think I have mentioned before that I am trying to find a new neurologist. Still working on that.) After shaming her into it she prescribed a low dose of amitriptiline, starting me on 10 mg at night for two weeks, and then 20 mg nightly, which still did nothing for the pain. At a recent visit to my primary care physician he asked how I was doing with the pain so I told him what was going on and he immediately sent in a prescription for amitriptilyne at 50 mg. I've been on that dose for about a week. I honestly can't tell if it is helping, or if I've now been on the gabapentin long enough for it to be helping. I still have to go through my nightly ritual of getting my bed as cool as possible to keep the bedding from irritating my skin but I am seeing a difference as to how I feel during the day and on into evening. My prescribed dose of ativan and the occasional muscle relaxer also help at night.
Thanks for mentioning the article on why neuropathy pain is worse at night. I had actually already read it after scouring the internet for information. Again, as I mentioned to @amandajro, how busy or distracted I am during the day doesn't seem to lessen my neuropathy. I may be the exception to the rule when it comes to that, but then again, I don't think there really are any rules when it comes to neuropathy.
BTW, I still do not have an acutal diagnosis for my neuropathy. I had all the usual blood work done which didn't help much, but I need to have a nerve conduction study done. I have delayed that because you have to have that test done after you have showered and with no lotion on your body. For me that was an absolute deal breaker. Without the lotion, especially after a shower, my pain is much worse, bringing on the worst of the sharp, stinging, stabbing pains I've experienced since having had neuropathy, even after a mild, lukewarm shower. I am hopeful that I am getting better enough to the point that I will be able to have that test done soon.
Always glad to hear from you.
Take care.

Jump to this post

@maggie1960 I’m sure that like me, you’ve been tweaking and tweaking your routines to hone in on what seems to help/hurt you. I want to add that I never had such long discomfort after a shower as you have, mine would only be 90 minutes maybe after a hot shower, but after seeing the benefits of having water lukewarm, I also found that what helped me was taking my shower BEFORE a dose of Gabapentin was due. In my non-shower state, by body knows when my next dose is due, so if I cycle the shower to get that discomfort started before dose time, I found the Gabapentin worked to tackle it along with normal neuropathy pain. But with you having 36 hrs of discomfort after shower, I guess you get several doses of Gabapentin afterward.
Might I add re: nerve conduction study, I must say that after about 8 of them from 5 different Neurologists or hospitals, I do not recall any of them ever giving me advance instructions, especially re: shower beforehand. Because I’m a “bleeder”, I’m sure I always shaved my legs a day before, which would just be my choice to do that of course, as men are not required to shave their legs for it. They wipe, or give you a wipe, if needed to clean your legs, and you can easily apply lotion afterward. That has been my experiences anyway, every doctor is different, but maybe you can push on that if it’s a deal breaker for a test if you think it would be helpful. Hugs!!! This is so tough, Debbie

REPLY
1 reply
jfn | @jfn | Sep 12, 2022
In reply to @maggie1960 "@johnbishop Hi John, You may have seen my reply to @amandajro about my night time ritual..." + (show)
@maggie1960

@johnbishop
Hi John,
You may have seen my reply to
@amandajro about my night time ritual that helps me get more comfortable. I mentioned there that I put lotion on at least two or three times a day, as that seems to help with the irritation my skin has from fabric.
You asked about pain medications. I am into my 5th week of gabapentin, and 3rd week of amitriptyline. After being on the gabapentin for a couple of weeks I had to shame my neurologist (literally shame her) into giving me something for pain. Her suggestion was to take ibuprofen or tylenol. I didn't hesitate to tell her that those don't make a dent in the pain. (I think I have mentioned before that I am trying to find a new neurologist. Still working on that.) After shaming her into it she prescribed a low dose of amitriptiline, starting me on 10 mg at night for two weeks, and then 20 mg nightly, which still did nothing for the pain. At a recent visit to my primary care physician he asked how I was doing with the pain so I told him what was going on and he immediately sent in a prescription for amitriptilyne at 50 mg. I've been on that dose for about a week. I honestly can't tell if it is helping, or if I've now been on the gabapentin long enough for it to be helping. I still have to go through my nightly ritual of getting my bed as cool as possible to keep the bedding from irritating my skin but I am seeing a difference as to how I feel during the day and on into evening. My prescribed dose of ativan and the occasional muscle relaxer also help at night.
Thanks for mentioning the article on why neuropathy pain is worse at night. I had actually already read it after scouring the internet for information. Again, as I mentioned to @amandajro, how busy or distracted I am during the day doesn't seem to lessen my neuropathy. I may be the exception to the rule when it comes to that, but then again, I don't think there really are any rules when it comes to neuropathy.
BTW, I still do not have an acutal diagnosis for my neuropathy. I had all the usual blood work done which didn't help much, but I need to have a nerve conduction study done. I have delayed that because you have to have that test done after you have showered and with no lotion on your body. For me that was an absolute deal breaker. Without the lotion, especially after a shower, my pain is much worse, bringing on the worst of the sharp, stinging, stabbing pains I've experienced since having had neuropathy, even after a mild, lukewarm shower. I am hopeful that I am getting better enough to the point that I will be able to have that test done soon.
Always glad to hear from you.
Take care.

Jump to this post

@maggie1960
How much time are you allowing between taking the the gab and the amitriptilyne and actually going to bed?
jfn

REPLY
1 reply
medman18 | @medman18 | Sep 12, 2022
In reply to @maggie1960 "@johnbishop Hi John, You may have seen my reply to @amandajro about my night time ritual..." + (show)
@maggie1960

@johnbishop
Hi John,
You may have seen my reply to
@amandajro about my night time ritual that helps me get more comfortable. I mentioned there that I put lotion on at least two or three times a day, as that seems to help with the irritation my skin has from fabric.
You asked about pain medications. I am into my 5th week of gabapentin, and 3rd week of amitriptyline. After being on the gabapentin for a couple of weeks I had to shame my neurologist (literally shame her) into giving me something for pain. Her suggestion was to take ibuprofen or tylenol. I didn't hesitate to tell her that those don't make a dent in the pain. (I think I have mentioned before that I am trying to find a new neurologist. Still working on that.) After shaming her into it she prescribed a low dose of amitriptiline, starting me on 10 mg at night for two weeks, and then 20 mg nightly, which still did nothing for the pain. At a recent visit to my primary care physician he asked how I was doing with the pain so I told him what was going on and he immediately sent in a prescription for amitriptilyne at 50 mg. I've been on that dose for about a week. I honestly can't tell if it is helping, or if I've now been on the gabapentin long enough for it to be helping. I still have to go through my nightly ritual of getting my bed as cool as possible to keep the bedding from irritating my skin but I am seeing a difference as to how I feel during the day and on into evening. My prescribed dose of ativan and the occasional muscle relaxer also help at night.
Thanks for mentioning the article on why neuropathy pain is worse at night. I had actually already read it after scouring the internet for information. Again, as I mentioned to @amandajro, how busy or distracted I am during the day doesn't seem to lessen my neuropathy. I may be the exception to the rule when it comes to that, but then again, I don't think there really are any rules when it comes to neuropathy.
BTW, I still do not have an acutal diagnosis for my neuropathy. I had all the usual blood work done which didn't help much, but I need to have a nerve conduction study done. I have delayed that because you have to have that test done after you have showered and with no lotion on your body. For me that was an absolute deal breaker. Without the lotion, especially after a shower, my pain is much worse, bringing on the worst of the sharp, stinging, stabbing pains I've experienced since having had neuropathy, even after a mild, lukewarm shower. I am hopeful that I am getting better enough to the point that I will be able to have that test done soon.
Always glad to hear from you.
Take care.

Jump to this post

Good morning John, sorry to hear all the pain you are in daily. I also want to thank you for sharing your information. The only thing my neurologist did after all my blood work was to tell me to use a daily B12 1000 MG pill after breakfast.
I must say my pain has been minimal, but last night was my first true experience of PAIN, I was
awakened by pain in both feet that (thank God) lasted a few seconds, this happened 3/4 times then went away until sometime this morning when I got another "Jolt". So far so good today.
When I read all these stories of other people suffering, I am beginning to worry that I will become one of them shortly. I can only pray that I am not going to be one of them.
Regards,
Jack

REPLY
maggie1960 | @maggie1960 | Sep 12, 2022
In reply to @dbeshears1 "@maggie1960 I’m sure that like me, you’ve been tweaking and tweaking your routines to hone in..." + (show)
@dbeshears1

@maggie1960 I’m sure that like me, you’ve been tweaking and tweaking your routines to hone in on what seems to help/hurt you. I want to add that I never had such long discomfort after a shower as you have, mine would only be 90 minutes maybe after a hot shower, but after seeing the benefits of having water lukewarm, I also found that what helped me was taking my shower BEFORE a dose of Gabapentin was due. In my non-shower state, by body knows when my next dose is due, so if I cycle the shower to get that discomfort started before dose time, I found the Gabapentin worked to tackle it along with normal neuropathy pain. But with you having 36 hrs of discomfort after shower, I guess you get several doses of Gabapentin afterward.
Might I add re: nerve conduction study, I must say that after about 8 of them from 5 different Neurologists or hospitals, I do not recall any of them ever giving me advance instructions, especially re: shower beforehand. Because I’m a “bleeder”, I’m sure I always shaved my legs a day before, which would just be my choice to do that of course, as men are not required to shave their legs for it. They wipe, or give you a wipe, if needed to clean your legs, and you can easily apply lotion afterward. That has been my experiences anyway, every doctor is different, but maybe you can push on that if it’s a deal breaker for a test if you think it would be helpful. Hugs!!! This is so tough, Debbie

Jump to this post

@dbeshears1 Thanks for your input. I wish they had given me the option that you had of having the nerve conduction study done the way you did. For whatever reason they were adamant about coming in after showering with no lotion, and I asked them about it at least twice. Go figure. I'm in the process of trying to find a new neurologist. If I can get in with the one I want he would probably send me to a different Neuromuscular testing center and, hopefully, they would have less stringent rules. Also, my hope is that when I've been on the gabapentin long enough I will be able to withstand having the test done after showering and without the lotion.
Take care, Debbie!!

REPLY
txsongbird | @txsongbird | Sep 13, 2022

I am in Texas where a Rx is required for THC. My Rx is one gummy at a 10mg dose. It helps sooooo much.
The pain is awful at night, as I understand most neuropathy to be. As such, I take it about half an hour before I retire for bed.

REPLY
1 reply
bettersleep68 | @bettersleep68 | Sep 13, 2022
In reply to @jfn "@maggie1960 How much time are you allowing between taking the the gab and the amitriptilyne and..." + (show)
@jfn

@maggie1960
How much time are you allowing between taking the the gab and the amitriptilyne and actually going to bed?
jfn

Jump to this post

Does amitriptyline give you awful dry mouth

REPLY
jfn | @jfn | Sep 14, 2022

@bettersleep68,

Sadly and annoyingly, I already have a dry mouth. I have a mini humidifier to help with that, along with a saline nasal spray (otc). I also have allergy meds, that can also cause a dry mouth. Try the saline spray first, it helps. I also drink about 16 oz of water overnight.

JFN

REPLY
Vanessa | @maryvanessa | Sep 14, 2022
In reply to @txsongbird "I am in Texas where a Rx is required for THC. My Rx is one gummy..." + (show)
@txsongbird

I am in Texas where a Rx is required for THC. My Rx is one gummy at a 10mg dose. It helps sooooo much.
The pain is awful at night, as I understand most neuropathy to be. As such, I take it about half an hour before I retire for bed.

Jump to this post

I have it in my 1 leg bad from back surgeries . I use ZT lido patches they are RX but wow they do work for nerve pain when nothing else has , not even opioids , I wear mine at night on lumbar area on my hip and side of my foot where it hurts to even lay on the sheets These work great
ZTLido 1.8%
Ask your Doc about them
They are generics too but get RX strength
Has improved my sleep so much . You can o Lu wear 3 of them at 12 hours intervals

REPLY
pamelaz | @pamelaz | Sep 14, 2022
In reply to @mcd123 "Does anyone have any thoughts about why neuropathy pain increases so much at night. Also can..." + (show)
@mcd123

Does anyone have any thoughts about why neuropathy pain increases so much at night. Also can anyone share with me any digestive issues they are experiencing that could be related to neuropathy. Thanks. Cathy

Jump to this post

My pain in my legs and feet are 24/7. Even my seizure medicine makes them burn and other medicines. Gabapentin messes with your stomach and my anxiety medicine does too.

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