Living with Neuropathy - Welcome to the group

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.

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

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.

@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.

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

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

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

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

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

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