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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.

Debbie | @dbeshears1 | Jun 3, 2022
In reply to @fala "I have had Neuropathy for many years. Yes, it is progressive, but I did NOT expect..." + (show)
@fala

I have had Neuropathy for many years. Yes, it is progressive, but I did NOT expect this intense hand pain! I can still function with the pain in my feet. But, now the pain is over the top in my my hands and I need as many good ideas as I can get. I have a family event this weekend. ( Yikes) It is out of town, a "Celebration of Life" for my Brother-in-Law (who passed during Covid .) I am the only sister, but can I go? My hand pain has became so severe that I just shake then all day long to defer the pain. (Sounds crazy) I had acupuncture yesterday and it helped a bit ( which is HUGE!).... so I am going again today. I take CBD and over the counter pain pills, but it isn't cutting it. Any ideas? I live alone so I must function! I have a new Dr's appointment tomorrow where I could ask for a prescription, if I get a name of something to help the circulation. Not many Doctors know anything about PN in my area! Please help! Thank you!

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I take Gabapentin and that seem to have helped over the years compared to onset. However, I find the source of my pain often comes from heat and cold extremes, even hot/cold water and can last for hours. Last weekend I had a wedding and madd sure I took my lukewarm shower hours before so I had some recovery time. I also think once at the wedding and reception, the business of it kept my mind preoccupied to where afterward I realized how well I had been. I know the pain is very real, but I’m working on mind exercises/meditation to help.

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helenwalker | @helenwalker | Jun 4, 2022

Totally agree. I find that the only way I can cope with Motor Neuropathy, which I have had for about eight years, is to change my mindset. I try and 'switch off' from it, get my mind busy with other things, and accept that sometimes, I beat the Tiger, and sometimes, the Tiger wins! I am also watching a dear and much loved relative battling with stage four cancer, and realise that I am grateful not to have to cope with the horrors that they suffer.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 4, 2022
In reply to @fala "Wow, what a great website! Thank you so much for sending that site to me. I..." + (show)
@fala

Wow, what a great website!
Thank you so much for sending that site to me. I have a multitude of
ailments, but I also have a pretty good sense of humor
, so I can laugh at myself instead of crying (about half the time)
. I am impressed with some of the exercises that I have also been doing
with my physical therapist. It just reassures me that they are very valuable
and that I need to keep doing them on a regular basis.
I think that site is going to be my new B_I_B_L_E!!
Thank you again, that was very nice of you to take the time.
yes, hoping this Doctor was worth waiting for.
Best wishes,
Laura
Gail
Fala
Hey you
I answer to multiple names....

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@fala, I almost burst out laughing when read your "signature lines"! I too answer to multiple names - Ed, John, Hey you and a few other ones I can't put in writing 😂

Thank you for a ray of sunshine in the cloudy world of neuropathy!

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kenc | @kenc | Jun 4, 2022
In reply to @jeanallen "My doctor had given me a sample of Horizant.When she called a prescription in to the..." + (show)
@jeanallen

My doctor had given me a sample of Horizant.When she called a prescription in to the pharmacy they said it would be over $500.00 my insurance didn't cover it. I thought I had excellent innsurance Any ideals what could have gone wrong?

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Perhaps call your insurance company and ask why the medicine is not on their formulary.

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1 reply
oldkarl | @oldkarl | Jun 5, 2022
In reply to @mbeeson5 "I have had neuropathy in my feet for several years. I'm now 87 and recently it..." + (show)
@mbeeson5

I have had neuropathy in my feet for several years. I'm now 87 and recently it has spread up to near my knee. I take 1000 mcg of vitamin B-12 daily, but so far it hasn't helped. Suggestions?

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mbeeson5 , I am 82 I had BAD neuropathy with my LGMDr23, Gelsolin, Diabetes II, cancers everywhere. So I had a simple exome sequencing done by a small group of genetics labs. They all agreed on one thing. I have a gene that makes the body resist full use of turmeric. So I now take about 1/4 teaspoon in a cup of warm water every morning; and I have had only a couple spells of Neuropathy in two years. Just good old kitchen turmeric powder, first thing in the morning. oldkarl

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1 reply
jeanallen | @jeanallen | Jun 5, 2022
In reply to @kenc "Perhaps call your insurance company and ask why the medicine is not on their formulary." + (show)
@kenc

Perhaps call your insurance company and ask why the medicine is not on their formulary.

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Has anyone else ever had Horizant prices compared to that.
What could I ask for that would serve just as we!!?

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acv | @acv | Jun 6, 2022
In reply to @oldkarl "mbeeson5 , I am 82 I had BAD neuropathy with my LGMDr23, Gelsolin, Diabetes II, cancers..." + (show)
@oldkarl

mbeeson5 , I am 82 I had BAD neuropathy with my LGMDr23, Gelsolin, Diabetes II, cancers everywhere. So I had a simple exome sequencing done by a small group of genetics labs. They all agreed on one thing. I have a gene that makes the body resist full use of turmeric. So I now take about 1/4 teaspoon in a cup of warm water every morning; and I have had only a couple spells of Neuropathy in two years. Just good old kitchen turmeric powder, first thing in the morning. oldkarl

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I loved reading that turmeric just about banished your neuropathic pain, oldkarl!

I wrote elsewhere about how golden milk, the heated combination of turmeric, ginger, Ceylon cinnamon, and pepper helped lower my husband’s blood pressure. It also eased nerve pain in his neck and leg from too much driving. He now has it daily.

I cannot tolerate these ingredients, otherwise I’d drink it for my neuropathic pain and other conditions.

I know the piperine in the black pepper greatly potentiates the curcumin in the turmeric and adding a bit of healthy fat makes it more bioavailable, as it is fat soluble. Heating aids delivery as well.

Since curcumin and these other ingredients seem to act as powerful anti inflammatory and perhaps even blood thinning agents, I strongly suggest that folks check with their docs about interactions with other meds and supplements.

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swartzki | @swartzki | Jun 6, 2022
In reply to @saki "Thank you for responding to my post. Sometimes my scalp is a little sore and itching..." + (show)
@saki

Thank you for responding to my post. Sometimes my scalp is a little sore and itching but there is no actual pain, just a continual loss of hair. My dermatologist didn't offer any further information or suggest any treatment. I got the impression there was nothing to be done. I will check out the links you provided , any information would be helpful.

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I have small fiber neuropathy, and I have been losing my hair for five years. It’s almost all gone now. All I can find out is that the hair loss is a result of deoxygenated blood. I have never found any treatment options. It’s very emotionally challenging.

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2 replies
ellie28 | @ellie28 | Jun 7, 2022
In reply to @swartzki "I have small fiber neuropathy, and I have been losing my hair for five years. It’s..." + (show)
@swartzki

I have small fiber neuropathy, and I have been losing my hair for five years. It’s almost all gone now. All I can find out is that the hair loss is a result of deoxygenated blood. I have never found any treatment options. It’s very emotionally challenging.

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Know what your are going through. I am also losing my hair. Just started.

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ellie28 | @ellie28 | Jun 8, 2022

I also started loosing my hair and it has gotten very very thin. I am very depressed over it.

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