Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@grandmar

@qball2019
Wow!
What did your doc say and do?
Ronnie (GRANDMAr)

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@grandmar
Did you mean when I couldn't finish the EMG or when my doctor ditched me?

Liked by grandmaR

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@qball2019

@grandmar
Did you mean when I couldn't finish the EMG or when my doctor ditched me?

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Both

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In reply to @grandmar "Both" + (show)
@grandmar

@grandmar
The doctor just stopped and then said what he did get done was all normal. Normal? I can't even stand up straight. Every time I try it lights up the T10-T12 area and the hot, burning pain travels downward.

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These articles were in the latest Foundation for Peripheral Neuropathy's e-newsletter and I thought they would be of interest to the members in this discussion.

Coping with Peripheral Neuropathy – June 2019
https://www.foundationforpn.org/2019/06/06/coping-with-peripheral-neuropathy/?blm_aid=116106

Neuromodulation for Refractory Neuropathic Pain
https://www.foundationforpn.org/2019/06/10/neuromodulation-for-refractory-neuropathic-pain/?blm_aid=116106

Healthy Eating for Peripheral Neuropathy with Chef Bill Nolan
https://www.foundationforpn.org/2019/06/10/healthy-eating-for-peripheral-neuropathy-with-chef-bill-nolan/?blm_aid=116106

Studies to explore how myrcene, other cannabinoid-based ingredients can treat chronic-neuropathic pain
https://leaderpost.com/cannabis-health/studies-to-explore-how-myrcene-other-cannabinoid-based-ingredients-can-treat-chronic-neuropathic-pain/

Out-of-pocket costs for neurologic Cost of Meds medications rise sharply over 12 years
https://medicalxpress.com/news/2019-05-out-of-pocket-neurologic-medications-sharply-years.html

Liked by johnhans, elizabej

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I think I'm in here somewhere but my diagnosis has changed and I don't know if I'm in the right group. I finally received a second opinion and unfortunately it's worse. I have Complex Regional Pain Syndrome CRPS. Nicknamed the suicide disease as the on the long scale it's 42 out of 50. I have read reports that attempts and success range at almost 70%. So far no favorable prognosis. Same deal Gabapentin and pain killers. I've been promised I would be kept comfortable but no one knows how to do that. I live 24 7 in my dark room because the light affects my head. Is there anyone in this group that has had this disease for over 2 years as I believe we would have more in common. After 2 years your not eligible for testing anymore because after 2 years there is no chance of a cure. You are too alive to be helped by dying with Dignity because I suffer with my hands 24 7 it feels like they are in boiling oil. Because I'm not eligible I have to suffer forever. When your reading and they say rarely children get this but they do and it's vicious on our little warriors. HELP

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@confused1955
I'm sorry to hear you are suffering so bad. I do understand how relentless nerve pain drives you insane 24 hours per day and that it makes you think dark thoughts. I have them myself. I just posted an opioid alternative that my doctor gave me and it's helping. I'm still not able to do anything and I still have plenty of pain but it does offer some relief. I would suggest looking around for an integrative pain specialist. I have one that works with my pain management doctor. I just posted the info below in "Living With Neuropathy" on here. Check that group out. I think you will find lots of others that may offer some help.

Another thing to ask your pain management or integrative pain specialist to try is ketamine troches and oxytocin troches. They desolve under your tongue. They work together but you can also take them separately. I find that they work best together. You take the oxytocin and then wait 30 min. before taking the ketamine. Unfortunately, they don't work in pill form because the oxytocin cannot survive stomach acid. It's also an opioid alternative but is still a controlled substance. It is very effective and is actually the best pain relief I've had in many years! I am currently considering a ketamine infusion. Hope this might help someone!

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@confused1955

I think I'm in here somewhere but my diagnosis has changed and I don't know if I'm in the right group. I finally received a second opinion and unfortunately it's worse. I have Complex Regional Pain Syndrome CRPS. Nicknamed the suicide disease as the on the long scale it's 42 out of 50. I have read reports that attempts and success range at almost 70%. So far no favorable prognosis. Same deal Gabapentin and pain killers. I've been promised I would be kept comfortable but no one knows how to do that. I live 24 7 in my dark room because the light affects my head. Is there anyone in this group that has had this disease for over 2 years as I believe we would have more in common. After 2 years your not eligible for testing anymore because after 2 years there is no chance of a cure. You are too alive to be helped by dying with Dignity because I suffer with my hands 24 7 it feels like they are in boiling oil. Because I'm not eligible I have to suffer forever. When your reading and they say rarely children get this but they do and it's vicious on our little warriors. HELP

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Hello @confused1955, I'm also sorry to hear you are suffering so much. I agree with @qball2019 about looking around for an integrative pain specialist. You might consider joining the following discussion where other members are talking about Complex Regional Pain Syndrome (CRPS).

> Groups > Brain & Nervous System > RSD/CRPS
https://connect.mayoclinic.org/discussion/rsdcrps/

Also, there is more information on CRPS on the Mayo Clinic website here:
https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151

Did your doctor suggest any treatments or therapy after your diagnosis of CRPS?

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@confused1955

I think I'm in here somewhere but my diagnosis has changed and I don't know if I'm in the right group. I finally received a second opinion and unfortunately it's worse. I have Complex Regional Pain Syndrome CRPS. Nicknamed the suicide disease as the on the long scale it's 42 out of 50. I have read reports that attempts and success range at almost 70%. So far no favorable prognosis. Same deal Gabapentin and pain killers. I've been promised I would be kept comfortable but no one knows how to do that. I live 24 7 in my dark room because the light affects my head. Is there anyone in this group that has had this disease for over 2 years as I believe we would have more in common. After 2 years your not eligible for testing anymore because after 2 years there is no chance of a cure. You are too alive to be helped by dying with Dignity because I suffer with my hands 24 7 it feels like they are in boiling oil. Because I'm not eligible I have to suffer forever. When your reading and they say rarely children get this but they do and it's vicious on our little warriors. HELP

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@confused1955, I have a severe case of sfn and Erythromelagia in my feet. I understand your pain all too well. If I take a shower I am in agony all day from the warm water. The meds I take don’t work well, Gabapentin and Amitriptyline. There are many days I wish that I could be on a morphine drip because of the agony. I have not been given any kind of narcotics for pain management. The doctors want me to wean off the amitriptyline and try Cymbalta. I don’t think I could stand the weaning off period because the pain is at a 10 now for a good part of the day. I feel so awful for my husband and family because it’s not fair to them. I’m not functional any longer and I live in fear. Do you have CRPS in both hands? My feet get cold and hot and red, and when they are hanging down they turn purple. I have to keep them elevated most of the day. Do you have twitching in your hands? My left foot twitches all the time. I’m so sorry and I know how difficult it is to endure.

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@lauraj155

@confused1955, I have a severe case of sfn and Erythromelagia in my feet. I understand your pain all too well. If I take a shower I am in agony all day from the warm water. The meds I take don’t work well, Gabapentin and Amitriptyline. There are many days I wish that I could be on a morphine drip because of the agony. I have not been given any kind of narcotics for pain management. The doctors want me to wean off the amitriptyline and try Cymbalta. I don’t think I could stand the weaning off period because the pain is at a 10 now for a good part of the day. I feel so awful for my husband and family because it’s not fair to them. I’m not functional any longer and I live in fear. Do you have CRPS in both hands? My feet get cold and hot and red, and when they are hanging down they turn purple. I have to keep them elevated most of the day. Do you have twitching in your hands? My left foot twitches all the time. I’m so sorry and I know how difficult it is to endure.

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Yes it's in both hands. It feels like an open sore with alcohol being poured on them. I'm on 3600mg of gabapentin a day. I wish I had never started. I have tried a couple of times to go off. I also take 9mg hydromorph contin. Slow acting Dilauded as well a 4 …2mg Dilauded spread through the day. I can ask for anything for pain but they all make me constipated so sometime I don't even take all 4 because I'm afraid of the bowel issues. I got a prescription for Cymbalta came home and first read that I have 4 other meds you can't take with it. Then I started reading about it and there was no way I was going to take that. My specialist and primary both say they will never let me suffer but I do everyday but I'm only suffering not dying so I'm not eligible for dying with Dignity. Not sure what I did in my life to deserve this then I see pictures of children with it. I'm almost 65 I don't have as many years to suffer but the little ones have nothing to look forward to.

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Hi,

Like may others of us here on this blog that use Opioids, we even though they sometimes do not talk about it very much….. have sometimes severe constipation. Opioids or Opiates are considered restrictive to the intestinal track, I have suffered with that issue for a long time now.

If we take more medications for the pain, theen they have their side effects.

You may want to consider a hot tea called Senna during the day or at nite. I personally am taking the following items before bedtime and it works fairly well and it is all natural:

About 2 3 hours before retiring consider taking Peppermint Tea with the Senna tea 1 or 2 bags each night. Kick up your feet and relax a little.

Then just before retiring micowave some whole milk and flavor it with something (Carmel Chocolate or?) if you like or drink just plain.

Get some Organic Coconut Oil annd take 1 or 2 full tablespoons of it with the hot milk. It just melts quickly.

This will help you out a lot and get you on a better path for a better health and do the above each and every nite.

Then as needed, take 1 or 3 tablets of Senna Laxative at nite and if needed once or twice a week, but not every nite as you need to take a break a few days in between without any.

Anyway, if one lives on synthetic man made single molecule pain medications it will take there toll !

As for taking 3600mg of Gabapentin a day, you might consider slowly easing off a little (my personal opinion) as to me that is a fairly high amount, as always work with your physician. That medication will diffidently make your CNS become very active, again my tahts my opinion and personal experience as well.

Have a better life starting right now! Get informed as it is your life, your decisions and your choices. As always, help someone else in need. MicTim

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@mictim
The doctor that prescribes your medications should address the constipation issues. I recommend getting a bottle of Miralax. My doctor told me to take 75mg every other day and if that doesn't work you can take it once per day. For extreme issues grab a $1 bottle of magnesium citrate from Wal Mart and drink that. You may want to refrigerate it first so it doesn't take quite as bad. That stuff will do the trick but make sure you don't have to leave the house for 10-12 hours. My doctors never mentioned this to me for 15 years. It wasn't until about a year ago that my new doctor addressed it.

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@mictim

Hi,

Like may others of us here on this blog that use Opioids, we even though they sometimes do not talk about it very much….. have sometimes severe constipation. Opioids or Opiates are considered restrictive to the intestinal track, I have suffered with that issue for a long time now.

If we take more medications for the pain, theen they have their side effects.

You may want to consider a hot tea called Senna during the day or at nite. I personally am taking the following items before bedtime and it works fairly well and it is all natural:

About 2 3 hours before retiring consider taking Peppermint Tea with the Senna tea 1 or 2 bags each night. Kick up your feet and relax a little.

Then just before retiring micowave some whole milk and flavor it with something (Carmel Chocolate or?) if you like or drink just plain.

Get some Organic Coconut Oil annd take 1 or 2 full tablespoons of it with the hot milk. It just melts quickly.

This will help you out a lot and get you on a better path for a better health and do the above each and every nite.

Then as needed, take 1 or 3 tablets of Senna Laxative at nite and if needed once or twice a week, but not every nite as you need to take a break a few days in between without any.

Anyway, if one lives on synthetic man made single molecule pain medications it will take there toll !

As for taking 3600mg of Gabapentin a day, you might consider slowly easing off a little (my personal opinion) as to me that is a fairly high amount, as always work with your physician. That medication will diffidently make your CNS become very active, again my tahts my opinion and personal experience as well.

Have a better life starting right now! Get informed as it is your life, your decisions and your choices. As always, help someone else in need. MicTim

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Try the Keto diet. Much of my pain and numbness went away. 60% reduction

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@bigjeff

Try the Keto diet. Much of my pain and numbness went away. 60% reduction

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Totally agree with this and I’ve had the same experience. Eliminating inflammatory foods – totally eliminating, has made a big difference. It takes a lot of discipline. No sugar, gluten, dairy. That also means no wine or store bought juice, processed foods, fast food, etc. it works!

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@bigjeff

Try the Keto diet. Much of my pain and numbness went away. 60% reduction

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124736/ Why are doctors not advising us to try KETO diet????

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@qball2019

@mictim
The doctor that prescribes your medications should address the constipation issues. I recommend getting a bottle of Miralax. My doctor told me to take 75mg every other day and if that doesn't work you can take it once per day. For extreme issues grab a $1 bottle of magnesium citrate from Wal Mart and drink that. You may want to refrigerate it first so it doesn't take quite as bad. That stuff will do the trick but make sure you don't have to leave the house for 10-12 hours. My doctors never mentioned this to me for 15 years. It wasn't until about a year ago that my new doctor addressed it.

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Hi qball2019,

Your experience and information is good. I have used Miralax sometime ago and it somewhat worked. However, it is made with Peg3350 and totally a commercial/industrial chemical. I use Magnesium Citrate in an emergency and it works very well indeed. I found out to buy the most expensive brand as the taste is much better-to me anyway. Yes, take it cold! My view point is these two are good for a one time localized events.

PEG 3350 is a polymer that is too big to be absorbed by the intestine. PEG 3350 it temporally remains in the gut and holds water.
It should only be used on a temporary use. Phillip’s Milk of Magnesia (magnesium hydroxide, Bayer) or mineral oil my have a better safety profile. Mineral oil is not absorbed in the gut and works well. Never give Peg3350 to children as it may adverse events including neuropsychiatric symptoms with extreme long term use and it is totally not natural. We need to listen and gain knowledge from others and learn what is best to do for ourselves. Humm… lets see Natural vs Synthetic big Pharma.

This is way I shared with the group a more natural way that your body can get used to using. I really think that it is better to give our bodies something good to work with instead of one time event and something to react to thru force. It has taken many years for us to get here and one might consider to make simple steps to reverse our condition. Yes you are right that MC works well and that is good, thank you for sharing your experience as it is very valid. Everyone have a great day and eat more fruit!! MicTim

Liked by qball2019

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