1. < Neuropathy
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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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?

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

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davelobb12 | @davelobb12 | Feb 8, 2022
In reply to @fala "Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side..." + (show)
Profile picture for fala @fala

Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side effect, so I went to THC.
I use CBD for my PN, but the THC does not put me to sleep. Is there a particular brand or strain that works best? When I first tried Marijuana in my youth, some party people got very sleepy, but that was never a side effect for me. I thought I just did not take in enough inhaling. Now, I have tried several brands, even buying the most expensive to see if that was the answer. Nope.
I sure wish I could solve my sleep problem!! Any ideas out there?

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Also try this supplement Gotu Kola. Look it up its been around for hundreds of years. Helps sleep.

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fala | @fala | Feb 8, 2022

Thank you so much...I will try it!!!

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mykids | @mykids | Feb 12, 2022

I’m sorry numb and tingly in my face and lips I’m scared of ms
I do have high histamine and I had Covid

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1 reply
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emf21 | @emf21 | Feb 13, 2022
In reply to @amaze02 "I'm a type 2 diabetic , I get occasional pain in my legs. Trying to increase..." + (show)
Profile picture for amaze02 @amaze02

I'm a type 2 diabetic , I get occasional pain in my legs. Trying to increase my knowledge, for treatment and slowing its progress.

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Amaze02, I am a type 2 Diabetic for almost 12 years. One day I got up and I was numb from the buttocks down to the foot and toes on my right side. 6 months later Peripheral Neuropathy developed and progressed quickly in my right foot and ankle. My suggestion would be to keep your blood sugars stable, keep up physical activity. This Neuropathy is very painful, numb, cold and hot sensations, sensitivity to touch, tingling, burning, pins and needles, etc. MY doctor recently put me on Gabapentin to help the nerve pain.

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emf21 | @emf21 | Feb 13, 2022
In reply to @fala "Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side..." + (show)
Profile picture for fala @fala

Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side effect, so I went to THC.
I use CBD for my PN, but the THC does not put me to sleep. Is there a particular brand or strain that works best? When I first tried Marijuana in my youth, some party people got very sleepy, but that was never a side effect for me. I thought I just did not take in enough inhaling. Now, I have tried several brands, even buying the most expensive to see if that was the answer. Nope.
I sure wish I could solve my sleep problem!! Any ideas out there?

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Warm bath, reading, praying. But I also take Gabapentin, Baclofen, Lorazepam and Tramadol when the pain is severe, and I can't get any relief!

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emf21 | @emf21 | Feb 13, 2022
In reply to @pkindron "Hi Colleen & John, Thank you for sharing this information. My name is Patti and I'm..." + (show)
Profile picture for pkindron @pkindron

Hi Colleen & John,
Thank you for sharing this information. My name is Patti and I'm at work so i'm hoping i can finished typing this because I get interrupted frequently. I was just diagnosed with Peripheral Neuropathy. I've been having pain in my left calf for a couple years and going to PT for my back to help with herniated disc & arthritis. I started having more burning pain on my upper right thigh and noticed having some muscle wasting and weakness on my arms. I am not diabetic but do have Polycystic Liver and Kidney disease. I had a liver resection surgery in 2000 and a living kidney transplant in 2006. I finally went to a neurosurgeon and had 4 MRI's on my Brain, Cervical, Thoracic and Lumber spine which then was diagnosed. I do have a small sheath tumor around the L5 nerve root but it's so small that the neurosurgeron does not want ti perform any surgery at this time.. The plan is to have another MRI on the Lumbar and brain in 1 year. The neurosurgeron has referred me to a neurology consult.
I would appreciate any information . Would love to increase my knowledge and hoping I can slow down this progression. Thank you so much!
Pk

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My Neurosurgeon ordered MRIs of Lumbar and Myelogram for Lumbar as well as CT scan of Thoracic spine. Various problems visible with degenerative disc disease, calcification, spurs, arthritis, etc. He sent me to a Neurologist who diagnosed me with mild Neuropathy on both side of buttocks down to the feet. Shortly after, the foot pain, numbness, burning, cold sensations, over sensitive nerve pain all appeared withing weeks after the diagnosis.

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1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | Feb 13, 2022
In reply to @mykids "I’m sorry numb and tingly in my face and lips I’m scared of ms I do..." + (show)
Profile picture for mykids @mykids

I’m sorry numb and tingly in my face and lips I’m scared of ms
I do have high histamine and I had Covid

Jump to this post

Hi @mykids, Welcome to Connect. I know it can be scary when you don't know what is causing your symtpoms and it's easy to think the worst case when do searching for answers. Since you mentioned you have high histamine levels, here is some information that might be helpful.

-- Histamine Toxicity Symptoms, Diagnosis, Treatment: https://www.aaaai.org/Conditions-Treatments/Related-Conditions/histamine-toxicity
-- Low-Histamine Diet: Benefits and How it Works: https://www.verywellhealth.com/what-is-a-low-histamine-diet-4694529

@bluecow, @tracyfurtiscaudle and @alleah may also have posted in other discussions about high histamine levels and may have some suggestions to share with you also.

Have you discussed the symptoms with your doctor or care team?

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1 reply
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tracyfurtiscaudle | @tracyfurtiscaudle | Feb 13, 2022
In reply to @johnbishop "Hi @mykids, Welcome to Connect. I know it can be scary when you don't know what..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi @mykids, Welcome to Connect. I know it can be scary when you don't know what is causing your symtpoms and it's easy to think the worst case when do searching for answers. Since you mentioned you have high histamine levels, here is some information that might be helpful.

-- Histamine Toxicity Symptoms, Diagnosis, Treatment: https://www.aaaai.org/Conditions-Treatments/Related-Conditions/histamine-toxicity
-- Low-Histamine Diet: Benefits and How it Works: https://www.verywellhealth.com/what-is-a-low-histamine-diet-4694529

@bluecow, @tracyfurtiscaudle and @alleah may also have posted in other discussions about high histamine levels and may have some suggestions to share with you also.

Have you discussed the symptoms with your doctor or care team?

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Thank you so much for your information and support. Currently still going for testing to determine the cause of my low history issue. High Chromogranin A levels pose a health concern for me as well. Best to all of you with this complicated issue.

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fala | @fala | Feb 13, 2022
In reply to @artscaping "Hi @fala, nice to see you again. I remember that you are having trouble sleeping or..." + (show)
Profile picture for Chris, Alumni Mentor @artscaping

Hi @fala, nice to see you again. I remember that you are having trouble sleeping or is it getting to sleep. With me, it is getting to sleep. Whew....my mind just jumps around. I do some concentrated breathing and focus on positive thoughts in a mindful way. I also reduce my THC but don't get rid of it because then you give up the entourage effect. For me, that means a 2:1 CBD/THC dosage. How much are you using? I use a full dropper and the under-the-tongue method about 30 minutes before lights out. I also stay off my devices and repeat some mindfulness/meditation messages to myself.

Do you take naps during the day? Long ones? Short ones?
May you find rest and contentment.
Chris

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Hi Chris,
Thanks for the response!
I never take a nap. I have been very tired, and will rest for !/2 hour, but do NOT sleep. Actually, since I get so VERY tired, I would probably take a nap if I could. At night I take OTC's, Melatonin, a couple of anxiety pills, Sleepy time tea, but rarely get more than 4 0r 5 hours total per night. If I remember to have a drink before I go up to bed, it will help me GO to sleep, but I do not stay asleep. I have tried under the tongue THC as well, but no magic bullet yet! Yep, do the deep breathing, tried different background sounds, and still cannot seem to find the right combo. Thanks for every bit of info!!

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bgiddio | @bgiddio | Feb 13, 2022
In reply to @emf21 "My Neurosurgeon ordered MRIs of Lumbar and Myelogram for Lumbar as well as CT scan of..." + (show)
Profile picture for emf21 @emf21

My Neurosurgeon ordered MRIs of Lumbar and Myelogram for Lumbar as well as CT scan of Thoracic spine. Various problems visible with degenerative disc disease, calcification, spurs, arthritis, etc. He sent me to a Neurologist who diagnosed me with mild Neuropathy on both side of buttocks down to the feet. Shortly after, the foot pain, numbness, burning, cold sensations, over sensitive nerve pain all appeared withing weeks after the diagnosis.

Jump to this post

I was diagnosed with idiopathic neuropathy, meaning the Neurologist doesn't know what is causing it. I have bulging discs, spinal stenosis, and arthritis. I go to physical therapy and my therapist believes the neuropathy is causing the neuropathy, and I believe it is too. But now what?

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