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?

@moragsmum

Thanks for adding me to this group. I’m not totally sure if it’s the right one (! do hope so, the posts are so helpful and friendly!). I’ve been diagnosed with parasthesia and am still in the process of tests. It sounds pretty similar to neuropathy, but (luckily) without pain, just crawling and tingling sensations. Will be checking back once I get a firm diagnosis. Thank heavens for the wisdom of the masses and the kindness of strangers…😊

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Hello @moragsmum, Welcome to Connect. I hope you are able to check back with us once you have a diagnosis. From what I've read about Paresthesia, treatment depends on the underlying cause.

NIH – Paresthesia Information Page: https://www.ninds.nih.gov/Disorders/All-Disorders/Paresthesia-Information-Page
Cleveland Clinic – Numbness: https://my.clevelandclinic.org/health/symptoms/21015-numbness

@moragsmum may I ask how long you have had the symptoms before you went to the doctor?

Liked by steeldove

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Things began this August with an appallingly itchy scalp, which progressed to the nape and presented as burning – and is still there. In September the crawling sensation began throughout my body. Acupuncture helps, I think, but a weekly session is getting a bit costly. The sensation is now tickling in my eyelids, brows, throat, and upper lip (what a litany). I saw two dermatologists first, who weren't much help, and a neurologist last week, am hoping for some clarity and definition from the tests he ordered.

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@moragsmum

Things began this August with an appallingly itchy scalp, which progressed to the nape and presented as burning – and is still there. In September the crawling sensation began throughout my body. Acupuncture helps, I think, but a weekly session is getting a bit costly. The sensation is now tickling in my eyelids, brows, throat, and upper lip (what a litany). I saw two dermatologists first, who weren't much help, and a neurologist last week, am hoping for some clarity and definition from the tests he ordered.

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The MS Foundation's magazine has an article that talks about parathesia that may give you some more information.

13 Points about the Pesky Skin Sensations of Paresthesia
https://www.msfocusmagazine.org/Magazine/Magazine-Items/13-Points-about-Paresthesia

Have you already had the tests ordered by neurologist? Hope they will help you find a better treatment.

Liked by steeldove

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@johnbishop

The MS Foundation's magazine has an article that talks about parathesia that may give you some more information.

13 Points about the Pesky Skin Sensations of Paresthesia
https://www.msfocusmagazine.org/Magazine/Magazine-Items/13-Points-about-Paresthesia

Have you already had the tests ordered by neurologist? Hope they will help you find a better treatment.

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Thanks John! Will check it out. I'm having EMG tests this evening, and a
CRP bood test tomorrow.

On Mon, 9 Dec 2019, 16:03 Mayo Clinic Connect, wrote:

>
>
> Mayo Clinic Connect
> *Reply by* *@johnbishop
> *
> on Mon, Dec 9
>
> *Reply*
> The MS Foundation's magazine has an article that talks about parathesia
> that may give you some more information.
>
> 13 Points about the Pesky Skin Sensations of Paresthesia
> —
> https://www.msfocusmagazine.org/Magazine/Magazine-Items/13-Points-about-Paresthesia
>
> Have you already had the tests ordered by neurologist? Hope they will help
> you find a better treatment.
> VIEW & REPLY
>
> or reply to this email to respond.
>
> *This Discussion is a part of Neuropathy
> *
> ——————————
> Unsubscribe
>
> from this thread.
>

–000000000000980db7059945e5c5
Content-Type: text/html; charset="UTF-8"
Content-Transfer-Encoding: quoted-printable

Thanks John! Will check it out. I'm having EMG tests =
this evening, and a CRP bood test tomorrow.On Mon, 9 Dec 2019, 16:03 Mayo C=
linic Connect, wrote:=C2=A0=
Mayo Cl=
inic ConnectReply by @jo=
hnbishop on Mon, Dec 9ReplyThe MS Foundation's magazine has an article that talks about parathesi=
a that may give you some more information.

13 Points about the Pesky Skin Sensations of Paresthesia
https://www.ms=
focusmagazine.org/Magazine/Magazine-Items/13-Points-about-Paresthesia

Have you already had the tests ordered by neurologist? Hope they will help =
you find a better treatment.VIEW & REPLY or reply=
to this email to respond.This Discussion is a part of NeuropathyUnsubscribe from this t=
hread.

–000000000000980db7059945e5c5–

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@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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I have been living with peripheral neuropathy off and on for 20 years after a bout with transverse myelitis which was diagnosed at John Hopkins. Ten years ago and five years ago redid MRIs and was diagnosed with idiopathic neuropathy but luckily no further lesions. Have done pretty well with 1100 mg of gabapentin until the last month and cannot seem to get much relief even with close to 2000. Happy to find this group to hear how others manage PN.

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@aponce

I have been living with peripheral neuropathy off and on for 20 years after a bout with transverse myelitis which was diagnosed at John Hopkins. Ten years ago and five years ago redid MRIs and was diagnosed with idiopathic neuropathy but luckily no further lesions. Have done pretty well with 1100 mg of gabapentin until the last month and cannot seem to get much relief even with close to 2000. Happy to find this group to hear how others manage PN.

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Hello @aponce, Welcome to Connect. Hoping other members can also share what helps them manage PN. I've posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

Have you tried any alternative therapy or treatments to help with the pain?

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Since it has been under control, and periodic, i have learned to live with it. I am in the process of getting my State i.d. for medical marijuana since it has gotten much worse.

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I was going to try gummies but found out and going to ask on my Friday’s appointment in detail about this too. When I did try and it was found in my urine I was told I am not allowed too do any weed.
So I was confused and quick answer over phone was is if I’m on Percocet then and can’t be or have marijuana in urine or can’t they will stop my Percocet Prescription
I’m not at a point where I can pick weed when it’s not
Given to me through my doctor and I really don’t know much about it.
Wish they would embrace it more study it and help people that might need it.
So is it Kaiser??? Or federal or because I’m over 60 and they are afraid I’m going to fall. Who knows.

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@cocodab

I was going to try gummies but found out and going to ask on my Friday’s appointment in detail about this too. When I did try and it was found in my urine I was told I am not allowed too do any weed.
So I was confused and quick answer over phone was is if I’m on Percocet then and can’t be or have marijuana in urine or can’t they will stop my Percocet Prescription
I’m not at a point where I can pick weed when it’s not
Given to me through my doctor and I really don’t know much about it.
Wish they would embrace it more study it and help people that might need it.
So is it Kaiser??? Or federal or because I’m over 60 and they are afraid I’m going to fall. Who knows.

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@cocodab I just read your post. I am feeling fortunate that my pain management program suggests the use of marihuana and obtaining my medical marijuana card. I have done this and use sublingual CBD/THC. I continue with percocet. The CBD without THC helps with my extreme anxiety which adds to my pain.

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I believe there is much good with CDC/THC. The medical field should learn and keep an open mind. Bottom line enough is not being done with people with pain and or I feel to help listen be Compassionate and even make us oable to operate if possible.

Liked by rwinney

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@cocodab

I believe there is much good with CDC/THC. The medical field should learn and keep an open mind. Bottom line enough is not being done with people with pain and or I feel to help listen be Compassionate and even make us oable to operate if possible.

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The osteopath I see for manual manipulation to try to ease the pain from small fiber and large fiber neuropathy, a very, very arthritic spine, and scoliosis suggested that I apply for a medical marijuana card. He's in the process of helping me complete my application.

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@summertime4

@cocodab I just read your post. I am feeling fortunate that my pain management program suggests the use of marihuana and obtaining my medical marijuana card. I have done this and use sublingual CBD/THC. I continue with percocet. The CBD without THC helps with my extreme anxiety which adds to my pain.

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Hello, you mention that you remain on Percocet with cbd/thc. I'm trying to find a proper dosing of CBD dominant and THC dominant oils that take care of my intensely growing and debilitating pain. Although I'm still experimenting and won't give up hope quite yet, my body and track record prove that Im not your average case…as confirmed by the dispensary pharmacist. My fear is over medication. I have not been able to reduce my hydrocodone intake for pain despite adding the medical marijuana or lidocaine infusions or myofascial release or 50,000 supplements or heat or ice or rest or Lyrica or Duloxetine. My neuropathy continues to progress. I continue to be fooled by the thought that this new way of living is temporary, will be fixed or helped with B12 or any of the above mentioned. Mind you it all plays a collective role but not enough, bottom line. I've really tried hard to understate my pain and circumstance in hopes of slowing progression by simply being optimistic. I have rolled with each punch thinking it will stop, it will slow, it will improve…I'm not as bad as I think. I've compared myself to many others which is never a good thing to do because I set myself up for disappointment and frustration when I hear someone could do something I can't like work, drive, walk, exercise, stretch. I feel like the life is slowly getting sucked out of me. I'm becomming housebound and reclusive due to pain and honestly am baffled, dumbfounded, befuddled at my physical being and how my once active, able and willing life has made this turn. I've held it back but I'm saying it now…I'm scared. I was scared 2 years ago, I was scared a year ago and I'm more scared now after feeling what 3 years has done to my body. I will turn 50 in March and honestly will accept that age easily as it is the least of my worries. Thanks for listening.
Rachel

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@cocodab

I was going to try gummies but found out and going to ask on my Friday’s appointment in detail about this too. When I did try and it was found in my urine I was told I am not allowed too do any weed.
So I was confused and quick answer over phone was is if I’m on Percocet then and can’t be or have marijuana in urine or can’t they will stop my Percocet Prescription
I’m not at a point where I can pick weed when it’s not
Given to me through my doctor and I really don’t know much about it.
Wish they would embrace it more study it and help people that might need it.
So is it Kaiser??? Or federal or because I’m over 60 and they are afraid I’m going to fall. Who knows.

Jump to this post

@cocodab
@rwinney
A year or two ago my PCP told me that if he learned that I was using any cannabis product he would stop prescribing morphine sulfate contin, Klonopin and Percocet. That pretty much ended any consideration of medical marijuana and CBD oil and all of the things so many people have found very helpful. My pain specialist told me that he would prescribe medical marijuana if the group he's with would permit it, but they set a policy that prevents it. So, even though Oregon legalized cannabis, very few doctors are willing to write a medical marijuana permit. The only one that I know of is a partner with many dispensaries and runs a circuit of towns, and is in my town once a month. He's got a pretty slick thing going.

Jim

Liked by rwinney

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@rwinney

Hello, you mention that you remain on Percocet with cbd/thc. I'm trying to find a proper dosing of CBD dominant and THC dominant oils that take care of my intensely growing and debilitating pain. Although I'm still experimenting and won't give up hope quite yet, my body and track record prove that Im not your average case…as confirmed by the dispensary pharmacist. My fear is over medication. I have not been able to reduce my hydrocodone intake for pain despite adding the medical marijuana or lidocaine infusions or myofascial release or 50,000 supplements or heat or ice or rest or Lyrica or Duloxetine. My neuropathy continues to progress. I continue to be fooled by the thought that this new way of living is temporary, will be fixed or helped with B12 or any of the above mentioned. Mind you it all plays a collective role but not enough, bottom line. I've really tried hard to understate my pain and circumstance in hopes of slowing progression by simply being optimistic. I have rolled with each punch thinking it will stop, it will slow, it will improve…I'm not as bad as I think. I've compared myself to many others which is never a good thing to do because I set myself up for disappointment and frustration when I hear someone could do something I can't like work, drive, walk, exercise, stretch. I feel like the life is slowly getting sucked out of me. I'm becomming housebound and reclusive due to pain and honestly am baffled, dumbfounded, befuddled at my physical being and how my once active, able and willing life has made this turn. I've held it back but I'm saying it now…I'm scared. I was scared 2 years ago, I was scared a year ago and I'm more scared now after feeling what 3 years has done to my body. I will turn 50 in March and honestly will accept that age easily as it is the least of my worries. Thanks for listening.
Rachel

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God bless you! I am in the boat as you going on 2 yrs now! And the pain never goes away! I pray to God please just give me one day, one hour,one min. Without pain,but no it just keeps getting worst every damn day I wake up it's there, I go to sleep, it's there! You are not alone! Right now I feel like throwing my phone across the room,from this stupid nerve damage i have ! I will pray for you,and I'm so very sorry you are the same as me,cause I know how bad it sucks! I don't feel like doing anything and I'm only 54 but feel 90! God bless you!

Liked by rwinney

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@rwinney

Hello, you mention that you remain on Percocet with cbd/thc. I'm trying to find a proper dosing of CBD dominant and THC dominant oils that take care of my intensely growing and debilitating pain. Although I'm still experimenting and won't give up hope quite yet, my body and track record prove that Im not your average case…as confirmed by the dispensary pharmacist. My fear is over medication. I have not been able to reduce my hydrocodone intake for pain despite adding the medical marijuana or lidocaine infusions or myofascial release or 50,000 supplements or heat or ice or rest or Lyrica or Duloxetine. My neuropathy continues to progress. I continue to be fooled by the thought that this new way of living is temporary, will be fixed or helped with B12 or any of the above mentioned. Mind you it all plays a collective role but not enough, bottom line. I've really tried hard to understate my pain and circumstance in hopes of slowing progression by simply being optimistic. I have rolled with each punch thinking it will stop, it will slow, it will improve…I'm not as bad as I think. I've compared myself to many others which is never a good thing to do because I set myself up for disappointment and frustration when I hear someone could do something I can't like work, drive, walk, exercise, stretch. I feel like the life is slowly getting sucked out of me. I'm becomming housebound and reclusive due to pain and honestly am baffled, dumbfounded, befuddled at my physical being and how my once active, able and willing life has made this turn. I've held it back but I'm saying it now…I'm scared. I was scared 2 years ago, I was scared a year ago and I'm more scared now after feeling what 3 years has done to my body. I will turn 50 in March and honestly will accept that age easily as it is the least of my worries. Thanks for listening.
Rachel

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Good evening Rachel @rwinney. I have now read your post several times. You have always been upbeat about your own pain and discomfort, compassionate and caring to others about their challenges. You are strong and persistent, open to researching and listening. Each trial of a treatment or medication was approached with a sense of good planning and an expectation of success. Too optimistic?…perhaps, too hopeful? aren't we all?

You have always been trying to figure out what type of neuropathy you had and what caused it.

You were not going to settle for idiopathic. I have been there…..and now I am waking up in the morning to greater pain not only in my feet and ankles but also popping up over my knees.

How did it get that far this fast? Why are my wrists so cranky? How do I know the barometer reading every day without looking?

And then there is the self-doubt….don't these people know I am in a 6-8 pain level all the time? I better not tell them or they might not want to hang out with me, see me as a PITA.

Why am I more comfortable just staying at home? I know…..I don't have to worry about finding or taking my medication, I don't have to worry about running out of steam and just losing it in a restaurant or at a friend's house.

Let's focus on what you do know about yourself and the treatments/medications that are available to you today. Can you lay out a plan that assigns dosages or levels to your needs throughout the day?

I think we can become more pain tolerant to a certain extent with distractions, activities, mindfulness, and meditation. My spiritual guru, Patsy, would tell you that you have to acknowledge the pain if you want to have some control over it.

I am ready to sleep now, so will say goodnight. May you be free of suffering and the causes of suffering dear Rachel. I am here for you. Chris

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