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?

@venki

Today I took head bath and after that I used hair drier. In the evening I had severe headache which still continues. My question is whether the heater will make any changes in the brain and spoil the inner parts as I am having CSVD & Atrophy. Anybody pl.clarify.

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@venki I am really sorry to hear your headaches are continuing. I don't know how a hair drier would affect the inner parts of the brain but hot is hot and a hair drier can put out a lot of heat. I'm guessing if it's too close it can burn the scalp. Have you talked to your doctor about it? Most of the time when I use a hair drier (I don't have that much hair!) it's on the cool setting as you don't necessarily need the heat to dry the hair.

John

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@johnbishop , Hi John. Haven't posted in a long time. Nothing for me has changed yet, I feel like I'm just a broken record. Anyway, years ago I had terrible migraines, the throwing up, light sensitive, tunnel vision, aura kind. The only thing that helped was very hot heating pads, with pillow on top of my head. To this day, cold on my head is very painful to me. I have since stopped the migraines mostly by cutting down on caffeine and maybe it was hormone related. I was finally prescribed Imitrex and fioricet which was also extremely helpful. My ex also bought me a "cornbag" that you can heat in the microwave. It eventually burned up in the microwave. Wish I had another one. Maybe, all my problems now stem from a cooked brain. lol

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@danybegood1

@johnbishop , Hi John. Haven't posted in a long time. Nothing for me has changed yet, I feel like I'm just a broken record. Anyway, years ago I had terrible migraines, the throwing up, light sensitive, tunnel vision, aura kind. The only thing that helped was very hot heating pads, with pillow on top of my head. To this day, cold on my head is very painful to me. I have since stopped the migraines mostly by cutting down on caffeine and maybe it was hormone related. I was finally prescribed Imitrex and fioricet which was also extremely helpful. My ex also bought me a "cornbag" that you can heat in the microwave. It eventually burned up in the microwave. Wish I had another one. Maybe, all my problems now stem from a cooked brain. lol

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Hi Dany (@danybegood1), it's good to hear from you. I used to have one of those microwave cornbags that I used for my feet which are always cold. I now crank up the electric blanket an hour before I go to bed and also wear socks. I found some ankle socks with bamboo fibers in them that are really soft and very stretchy so are easy to slip on and off. I always end up turning off the blanket shortly after getting into bed though.

Hope you have a pain free evening . ~ John

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Hello members of the Neuropathy group. I think it's safe to say that everyone sharing in this group has been greeted by @johnbishop. He seems to always be online to offer information, give support, connect you with others, and to share a laugh of two. Ever wonder what makes John tick and what he does when he's not on Connect? Now you can.

Check out the Member Spotlights and read the latest story about John.
– Searching for Answers With Others: Meet @johnbishop https://connect.mayoclinic.org/newsfeed-post/searching-for-answers-with-others-meet-johnbishop/

Be sure to subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

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I don't have diabetes but the nerve test definitely showed neuropathy in my feet. I have been on gabapentin for years and it seems to help some. It bothers the most when I first go to bed at night so my doctor added nortriptyline. For severe back pain I have been on Oxycodone 1/2 tab. every 3 hours during the day for many years. I usually use thermal paks when I go to bed — sometimes they seem to help — sometimes I push them off. Any suggestions?

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@ann192790

I don't have diabetes but the nerve test definitely showed neuropathy in my feet. I have been on gabapentin for years and it seems to help some. It bothers the most when I first go to bed at night so my doctor added nortriptyline. For severe back pain I have been on Oxycodone 1/2 tab. every 3 hours during the day for many years. I usually use thermal paks when I go to bed — sometimes they seem to help — sometimes I push them off. Any suggestions?

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I buy Packs of 4 wool socks at Costco – and wear them to bed every night. They help – maybe not as much as a Thermapak, but you don't push them off either.

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@ann192790

I don't have diabetes but the nerve test definitely showed neuropathy in my feet. I have been on gabapentin for years and it seems to help some. It bothers the most when I first go to bed at night so my doctor added nortriptyline. For severe back pain I have been on Oxycodone 1/2 tab. every 3 hours during the day for many years. I usually use thermal paks when I go to bed — sometimes they seem to help — sometimes I push them off. Any suggestions?

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Hello @ann192790 — Welcome to Connect. We're glad you found us. Socks are a good idea at night for those of us that have neuropathy. I use an old sheepskin throw and have it under the covers at the bottom of the bed so the feet rest on it. It seems to help keep the feet from getting too cold. I've recently found some really comfy bamboo thread ankle socks that I use at night. They are really easy to put on and take off because they are stretchy and soft. Wool socks like @barbarn suggests would probably be warmer. We also use an electric blanket but I turn it on an hour before bedtime and turn it off when I got to bed.

@ann192790 do you have pain with the neuropathy in your feet?

John

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@ann192790

I don't have diabetes but the nerve test definitely showed neuropathy in my feet. I have been on gabapentin for years and it seems to help some. It bothers the most when I first go to bed at night so my doctor added nortriptyline. For severe back pain I have been on Oxycodone 1/2 tab. every 3 hours during the day for many years. I usually use thermal paks when I go to bed — sometimes they seem to help — sometimes I push them off. Any suggestions?

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The pain is mostly in my toes. If I concentrate and hold them still they feel better but my mind wanders and they don't hold still again making them very uncomfortable.

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@ann192790

I don't have diabetes but the nerve test definitely showed neuropathy in my feet. I have been on gabapentin for years and it seems to help some. It bothers the most when I first go to bed at night so my doctor added nortriptyline. For severe back pain I have been on Oxycodone 1/2 tab. every 3 hours during the day for many years. I usually use thermal paks when I go to bed — sometimes they seem to help — sometimes I push them off. Any suggestions?

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@ann192790 is it mostly in bed that your toes bother you? I've read where others could not stand to have the sheets touching their feet/toes at night. If that is the case, they have these blanket lift frames you can put on the bottom of the bed to hold the blanket and sheets off of your feet.

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Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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For my neuropathy friends who live within driving distance of Minneapolis, the Minnesota Neuropathy Association is holding a meeting in May. I've attached a flyer and map if you are interested in attending. If you do attend, please share anything you learned at the meeting with us here on Connect. It may help one of your Connect friends.

Thursday May 24, 6 pm at St MIchael’s in Bloomimgton, MN
Presenter: Dr G Guliani, Neurologist at Health Partners and HCMC
Topic: Neuropathy: A clinical and patient centered update

Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

Shared files

MNA-May24-Mtg (MNA-May24-Mtg.pdf)

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We're coming on Sunday, so missed it by a day! Will wait for feedback from attendees. Thanks for letting me know.:) Pam

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@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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Hi John, Don't know if you remember me, but due to a serious scooter accident on Nov 10th, Colleen suggested she withhold connect as I had no accesses to a computer, etc. Not sure where to enter this again as I've been thru a lot and have come forth with some
interesting things. Such as now I have a neuropathy in my right foot, a possible treatment for vertigo, and pain in the area of a knee replacement where a plate from this femur fracture was attached, DEEP wound treatment (took over 4 months with daily dressing,. changes, etc, You get the idea. Wonder if I should give you the details of the accident and my world since along with other situations such as vertigo added to my recovery. And no, I am far from having recovered. From Nov until mid April, I was getting a nurse daily to change the dressing along with OT and PT 5 to 6 days a week! Now I am finally back living independently in my cottage within a retirement community and back with my physical therapist since my Dx of myotonic dystrophy from Mayo back in Dec 2013..
gailfaith

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Hello @pammiesue51, I see that you are new on Connect and I would like to welcome you. I normally go to the meetings for the Minnesota Neuropathy Association but this one is in the evening and I'm not keen on the drive back at night as it's about an hour or so drive from my location in southern Minnesota. If I go I will certainly give an update on the meeting. I maintain their website which has a lot of different neuropathy information from previous meetings and research links if you want to look at it — http://neuropathy-mn.org/.

I see in your earlier post you have neuropathy in your legs with numbness but no pain and it's from an unknown cause. I have idiopathic small fiber peripheral neuropathy in both my feet and legs and also do not have the pain, only the numbness. I saw that you are taking Lyrica and was wondering if it's for the neuropathy or for something else.

@pammiesue51 if you are comfortable sharing, can you tell us any more about your neuropathy?

If you want to know more about my neuropathy story you can read it in an earlier post here:
https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510

John

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@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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Hi @gailfaith, I do remember you. I’m sorry to hear about your scooter accident in November. The great thing about Connect is that you can post anywhere. I sometimes do not see a post unless I am tagged in the post with my Connect username @johnbishop — tagging a member with their username sends them an email notification that someone has tagged them in a post and also gives them a link back to the post. I happened to see your post because it showed up in the Connect Daily Digest and said Hi John.

I’m happy to hear you are recovering but I’m sure it’s not an easy thing for you. If you are comfortable sharing more and have questions you are trying to get answered, it would be a good thing as others reading may also be able to relate and share suggestions or help answer any questions you may have.

@gailfaith now that you are back living independently after your accident, have you had to do any adjusting to your lifestyle?

John

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