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?

@artscaping

@wilcy, Hi there, I notice that you started medical cannabis on Jul 8. You thought it would be interesting. I found it a bit overwhelming and intimidating until I found a "guide(s)" to show me the way. It does take quite a bit of experimenting and self-educating. When you went to the dispensary, were there folks to show you all of the options that might be appropriate for your condition? Of course, you do have to remember that you can always have more but you can never have less so start low and go slow.

In 3 years I have had only 2 episodes where I was loopy. Both involved mixing cannabis with alcohol. Now I know…..you just can't risk it. The loopy does go away in about 3 hours and you will be fine.

At this point, I use tinctures, topicals, and a vape cartridge….. no flowers, beverages or edibles. I have worked out a conservative and reliable strategy called Chris's protocol.

I know that product options have increased since I started. Would you be willing to share what products you are using and how you are feeling? If you have a question or two, I would be happy to help if I can.

Please be safe and protected…….Chris

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Hello, so far marijuana isn’t doing anything! Bought 5 different samples!

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@wilcy

Hello, so far marijuana isn’t doing anything! Bought 5 different samples!

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I’m using cbd topically on both my feet combined with other oils, foot soaks, tens machine and massage and so far no relief either

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@wilcy

Hello, so far marijuana isn’t doing anything! Bought 5 different samples!

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Took me 6 mo to figure out… the 3rd dispensary I tried had a Dr on staff. Basically, no set formula just trial and error…

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@cocodab

So sorry truly feel for you!❤️

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It is okay – I’m getting there. Takes so much determination not to give up… everyone dealing with chronic pain knows it is a tough road to travel… and a long journey to boot!

Liked by cocodab

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@rwinney

It was such a hard weekend…my daughter's graduation from high school party. I live for my kids and these moments and powered through so much. It didn't kill me but boy oh boy did it all hit me super hard. I had so much pain and moments of removal from the party due to dizziness, over heating, palpitations, and shortness of breath, along with migraine mid day which thankfully Cambia aborts. I just really miss life as it used to be.

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Powered through – good for you! Over the years my son was married and grandkids arrived. The grandkids didn’t understand (as they got older) why grandma slept so much. So happy I am off all meds now… still had chronic pain while on meds so I was always hopeful to try another route.

Liked by newzbug

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@gmaw4

It is okay – I’m getting there. Takes so much determination not to give up… everyone dealing with chronic pain knows it is a tough road to travel… and a long journey to boot!

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Wow you said it!!

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@rwinney

Thank you. It's so true though as I sit here crying reading everyones responses and likes. You all do help me. I'm at the hospital now hooked up to my 6th lidocaine infusion, after taking my hydrocodone for comfort and pain relief. I hate taking a narcotic! I'm so against it. I've never drank, smoked or done drugs and here I sit going through the motions with lidocaine that doesn't help this far, just trying to reduce the hydro.

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@rwinney
I am so sorry you are going through so much.
Please do not lump the pain meds together with alcohol and 'drugs'.
What you are taking is a medicine to help you with an illness.
These are not 'drugs' you use to get high.
Big difference!
I hope that you will be able to find comfort, soon/!
Ronnie (GRANDMAr)

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@rwinney

It was such a hard weekend…my daughter's graduation from high school party. I live for my kids and these moments and powered through so much. It didn't kill me but boy oh boy did it all hit me super hard. I had so much pain and moments of removal from the party due to dizziness, over heating, palpitations, and shortness of breath, along with migraine mid day which thankfully Cambia aborts. I just really miss life as it used to be.

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@rwinney
First off, congratulations on your daughter's graduation!
Graduation of a child is a milestone that some parents never get to see for one reason or another.
So, you are blessed to see it!

I really hate to say this, but life changes regardless if we are ill or not.
Age will do it!!!!!!!
But, I know what you mean and I don't minimize what you feel, experience or say.
The point is, it seems that if it is not one thing, another will 'get' you.
We can't expect our lives to go on and on and never change.
It does!

Take what you have and live your life the best you can.
Use each moment to try to build sweet memories.
Memories do not need to be made by movement, it can be done by sitting and talking.
Enjoy yourself!
Ronnie
(GRANDMAr)

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My diagnosis is Generalized Peripheral Neuropathy. I am here because of my neuropathy starting in my feet and moving up my legs. To help my feet, I did some research on sneakers (running shoes) with a wide toe box and added arch support. I have very flat feet. They are orthotic friendly. I currently use Brooks Adrenaline GTS18 in a Women's 11XWide. I love them. Super comfortable, great support. Not too expensive if you are willing to look. I found mine for under 90 dollars. My neuropathy started about 4 years ago after a car accident. I was pretty sure there was nothing they could do for me (based on my own research and reading), but my primary care doctor disagreed with me and recommended a neurologist. Well after she ran blood work and a battery of tests, guess what?! There really is nothing she can do to help me. She can't find a specific cause but recommended extra Vitamin D, and to try some Alpha Lipoic Acid vitamin supplements as there is research to show it can help some people. But according to the nerve conduction test it is also in my arms and legs on BOTH sides. So far, not my torso. But the neurologist will see me every 6months to monitor me. So I take 600 mg of the ALA per day. Can't walk barefoot outside anymore, it's like walking on glass to me. My feet have little feeling in them except occasional pain and burning. I relieve the burning pain by focusing a fan on it at night. Helps a lot. When the burning feels really bad, I soak them in cold water. Feels soooo good. I don't like pain, but I think the numbness is really scary, I can get hurt and not know it till I see the blood or bruise. (And I was put on blood thinners last year for blood clots in my lungs … yikes) Sometimes my feet feel like I am wearing Kleenex boxes on them for shoes. Weird feeling but when they stretch the end of my big toe, feels like it's touching the end of the box. I hope this site will be of some help to me. I just turned 60 and have been having these problems such a short time.

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@mfobrien36

Don’t laugh… I may have hit on something by accident that might help some of you. Most nights I use a foot cream on my “neuro-pathetic” feet just to keep them soft. I have the type of neuropathy that causes me to feel everything; for example – I can’t stand on the bathmat in my tub/shower as the little nubs really hurt. I get sharp, shooting pains in my toes and it wakes me up at night several times. I’ve tried gabapentin – didn’t work at all! SO… the other night, I picked up my Ben Gay – by accident – rather than my foot cream and before I realized my mistake (how’d you miss the smell?) I had rubbed it on my foot and ankle. It felt kinda good… so I rubbed it on the other foot. I slept through the night. The first time in many a month. I thought this likely was a fluke, but decided last night to try it again… it worked again and today both feet feel some better. Usually, night time is when my feet bother me most so I was delighted. Don’t know if it is a fluke or not, or if the Anti-neuropathy fairies have visited me while I sleep (I’m Irish so it could happen) but it seems like a cheap thing to try. I know it sounds goofy but if putting a bar of soap between your sheets wasn’t considered too “strange” a suggestion – maybe this might work for somebody besides me. I doubt whether it would work on feet/ankles etc. that have open sores, though… that might really hurt.

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I have also read that old school Vicks Vapo rub helps, if you can stand the smell. Probably the same way Ben Gay does.

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@grandmar

@rwinney
I am so sorry you are going through so much.
Please do not lump the pain meds together with alcohol and 'drugs'.
What you are taking is a medicine to help you with an illness.
These are not 'drugs' you use to get high.
Big difference!
I hope that you will be able to find comfort, soon/!
Ronnie (GRANDMAr)

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Thank you for your reassurance. I know, it took me a while to come to terms with acceptance of such drugs for pain relief purposes. Also, understanding it is ok due to circumstance beyond my control.

Liked by newzbug

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@newzbug

My diagnosis is Generalized Peripheral Neuropathy. I am here because of my neuropathy starting in my feet and moving up my legs. To help my feet, I did some research on sneakers (running shoes) with a wide toe box and added arch support. I have very flat feet. They are orthotic friendly. I currently use Brooks Adrenaline GTS18 in a Women's 11XWide. I love them. Super comfortable, great support. Not too expensive if you are willing to look. I found mine for under 90 dollars. My neuropathy started about 4 years ago after a car accident. I was pretty sure there was nothing they could do for me (based on my own research and reading), but my primary care doctor disagreed with me and recommended a neurologist. Well after she ran blood work and a battery of tests, guess what?! There really is nothing she can do to help me. She can't find a specific cause but recommended extra Vitamin D, and to try some Alpha Lipoic Acid vitamin supplements as there is research to show it can help some people. But according to the nerve conduction test it is also in my arms and legs on BOTH sides. So far, not my torso. But the neurologist will see me every 6months to monitor me. So I take 600 mg of the ALA per day. Can't walk barefoot outside anymore, it's like walking on glass to me. My feet have little feeling in them except occasional pain and burning. I relieve the burning pain by focusing a fan on it at night. Helps a lot. When the burning feels really bad, I soak them in cold water. Feels soooo good. I don't like pain, but I think the numbness is really scary, I can get hurt and not know it till I see the blood or bruise. (And I was put on blood thinners last year for blood clots in my lungs … yikes) Sometimes my feet feel like I am wearing Kleenex boxes on them for shoes. Weird feeling but when they stretch the end of my big toe, feels like it's touching the end of the box. I hope this site will be of some help to me. I just turned 60 and have been having these problems such a short time.

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@newzbug, Good evening and welcome to connect. We do not have medical credentials. Our medical experience is our own lives e.g. encounters with neuropathy and other afflictions. What is your reaction to the diagnosis? You stated in your post that you know there is no "cure" for any type of neuropathy. Nerves age and struggle to send messages to our muscles. Have you begun to create a daily protocol sheet that tracks the times and doses of your medications?

Sometimes the numbness in the feet becomes a hazard not only for staying balanced but also for having enough feeling in your feet to safely drive a vehicle. I have been conscientiously working on those feet for several years and have found that the only thing that works is consistently is Myofascial Release (MFR), a special kind of massage treatment.

Like you, I have most of my pain in my arms, wrists and hands. I just keep working on the pain and its buddy anxiety. When both of them are coming in loud and clear, and the barometric pressure is under 30……I remain pretty sedentary.

Have you found activities that distract you from the pain and keep the anxiety about the pain under control? Would you feel O.K. about sharing what works for you? I hope you have a restful sleep and can respond tomorrow. Chris

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@wilcy

Hello, so far marijuana isn’t doing anything! Bought 5 different samples!

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@wilcy, It is kind of discouraging when nothing works. Your expectations haven't been met. It does take time. You mentioned 6 different samples. Are you referring to different distribution modalities, vape, pills, topicals, tinctures? Have you found comfort with any of the distribution options? Is the dosage, e.g. 3/1 CBD:THC the right one for you? As someone mentioned on this page….settle in for a journey of experimentation and evaluation. We are here to help and share with you. Have a restful sleep. Chris

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@artscaping

@newzbug, Good evening and welcome to connect. We do not have medical credentials. Our medical experience is our own lives e.g. encounters with neuropathy and other afflictions. What is your reaction to the diagnosis? You stated in your post that you know there is no "cure" for any type of neuropathy. Nerves age and struggle to send messages to our muscles. Have you begun to create a daily protocol sheet that tracks the times and doses of your medications?

Sometimes the numbness in the feet becomes a hazard not only for staying balanced but also for having enough feeling in your feet to safely drive a vehicle. I have been conscientiously working on those feet for several years and have found that the only thing that works is consistently is Myofascial Release (MFR), a special kind of massage treatment.

Like you, I have most of my pain in my arms, wrists and hands. I just keep working on the pain and its buddy anxiety. When both of them are coming in loud and clear, and the barometric pressure is under 30……I remain pretty sedentary.

Have you found activities that distract you from the pain and keep the anxiety about the pain under control? Would you feel O.K. about sharing what works for you? I hope you have a restful sleep and can respond tomorrow. Chris

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The samples are marijuana! None have done anything while vaping, For some reason, driving really kills my feet! Neuropathy and cramping toes! Roadtrips used to be my hobby! Leaving to see foot doctor! Holler later!

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@artscaping

@newzbug, Good evening and welcome to connect. We do not have medical credentials. Our medical experience is our own lives e.g. encounters with neuropathy and other afflictions. What is your reaction to the diagnosis? You stated in your post that you know there is no "cure" for any type of neuropathy. Nerves age and struggle to send messages to our muscles. Have you begun to create a daily protocol sheet that tracks the times and doses of your medications?

Sometimes the numbness in the feet becomes a hazard not only for staying balanced but also for having enough feeling in your feet to safely drive a vehicle. I have been conscientiously working on those feet for several years and have found that the only thing that works is consistently is Myofascial Release (MFR), a special kind of massage treatment.

Like you, I have most of my pain in my arms, wrists and hands. I just keep working on the pain and its buddy anxiety. When both of them are coming in loud and clear, and the barometric pressure is under 30……I remain pretty sedentary.

Have you found activities that distract you from the pain and keep the anxiety about the pain under control? Would you feel O.K. about sharing what works for you? I hope you have a restful sleep and can respond tomorrow. Chris

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I was sort of getting my hopes up when my husband and my doctor tried to convince me something I knew wasn't true … that there was any medication I could take, or therapy or surgery. So there was a bit of a let down when the neurologists looked me in the eye and said,
"I wish I could say your low Vitamin D levels were the cause, but I can't" I just know things are going to get worse and just trying to cope as best I can. I also deal with Major Depressive Disorder so this could be an issue of worsening down the road, but for now I just deal with what is before me. Sometimes I just cry, a nice release of tension, or go to bed early, or do something I can still do … like play video games. While the neuropathy started in my feet, it is also now in my right hand. When I rest my hand on hard surfaces it hurts, but fabrics are comfortable, so I sometimes wear a compression glove to help with that. I don't mind sharing, I find it helps the anxiety and depression a little … Ask me anything, if I can help I will try. A friend is anyone who is good to you.

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