Living with Neuropathy - Welcome to the group

hi there I'm living in st John's Newfoundland living with neuropathy for about 5 years in my feet and both hands.24/7 I'm in so my pain just hard to function. I'm in tears most of the time the pain is unbearable,it effects my life in such that I have bad thoughts at times it's. just taken over my life. I used to be a pretty happy person the life of the party but not any more. my neurologist has me on different meds over the years but nothing has helped so far. I've never experienced pain like this before I'm also dealing with 2 types of arthritis also had double hip replacement 6 years agg. I just turned 60 and use to be very active not so much anymore.the pain in my hands it's hard to explain one minute they feel like I put in in the fireplace .other times it's like they are frostbitten.I wear my winter gloves about 23 hrs a day.I had a infusion of ketamine and lives and 3 weeks ago no help waiting to get another 5 hour treatment any day now.my doctor is trying his best buy so far no luck. I'm looking for any help or advice or suggestions .any help would be greatly appreciated. thanks

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Hi @bluesman1. Sorry to hear you are in so much pain. I’ve found so far that I’m better off with a “toolbox” if you will for neuropathy and associated pain. I have chronic pain caused by another condition, but I also have small fiber neuropathy. I was diagnosed three years ago with punch biopsy. What do I mean by a toolbox? A group of things that while individually may be of little help, but together with other things may make life bearable. No one deserves to be in pain like this. What’s in my toolbox:

Prescription meds: Lyrica, Effexor and Diazepam
Supplements B12/ Vitamin C & D
Topicals: CBD cream. CBD CLINIC PRO SPORT
LEVEL 5 (worth the $)
Cannabis: I don’t get any relief from ingesting CBD alone in any strength. If I smoke cannabis with THC and CBD, it helps. I use it all day, every day. I don’t like it, but it helps. I also use edibles 10mg usually a couple of times a day. I’ve been using cannabis for quite a while, so ease into it strength wise.

OTHER: you unfortunately live in a cold climate. This does two things to neuropathy to aggravate it - the barometric pressure drops and the cold air thickens your skin. Both increase pain. I hate to be the one to tell you this, but between neuropathy and arthritis, you need to move. A lot. I know it’s the last thing you want to hear but exercise helps everything. Even hand stretches, roll your ankles around, etc and see if you can exercise as often as possible. Keep warm. Cold climates are tough.

Compression sleeves: in winter, I wear these on my calves. Some days they really help. Can be worn on arms as well.

Socks: whatever you find agrees with your sensation. Footjoy makes some nice ones.

A TENS Unit: Doesn’t have to be a true TENS unit. You can buy one on Amazon for less than $40. You apply pads to different areas and turn on the sensation. This is for areas of pain and not as effective on arms and legs for me. However, you may find it makes a difference everywhere. Just a low hum produces the best result.

Weighted blanket: these are amazing. Mine is a 20lb model. It does work. I use mine whenever I’m on the couch, which is quite a bit.

In the car I now use a gel seat due to lower back fusion and nerve issues. It helps.

HEADSPACE: this is an app which teaches meditation, as well as providing stories for listening.

SPOTIFY: all the music you need

Yoga/ exercise: it’s counterintuitive, but exercise works for pain. I was working with a trainer for a year pre-pandemic, and it’s the first thing I’m going back to after my vaccine.
Resistance bands - great for the legs. Get the loops and stretch every day. It helps

If I think of anything else, I will post. I don’t have many answers except to say I know the pain. It changed my life. Disabled and retired early. Didn’t see this coming. However, as I’ve had time now (2 years since surgeries and diagnosis), I think the best advice I can give is to kind of lean into it a bit. Sadly, it’s not going anywhere. All you can do is try and minimize it and live with it. I wish you all the best. No one deserves to be in pain. I hope some of what I’ve shared will help. Reduced sugar and eliminating alcohol helps also. Believe me, I feel for you. It will stop you in your tracks as you know. Take care of yourself. Better days are ahead:)

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Thank you so much to process. My toes are so sensitive. The doctors have yet to say that it is neuropathy. I went to see a doctor today to request a doppler just to make sure that there is no blood clot as it is the 3rd surgery. The NP decided that he wanted to play doctor and tell me that his 83 year old mother told him to tell the patients to go back to therapy and work out at home. So I expressed that I want to be sure that I don't have a blood clot and he said he does not think so. So I never got a chance to see the doctor. I wrote it up and had to call back for another appointment. I was so upset I walked out crying.

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Hi @bluesman1. Sorry to hear you are in so much pain. I’ve found so far that I’m better off with a “toolbox” if you will for neuropathy and associated pain. I have chronic pain caused by another condition, but I also have small fiber neuropathy. I was diagnosed three years ago with punch biopsy. What do I mean by a toolbox? A group of things that while individually may be of little help, but together with other things may make life bearable. No one deserves to be in pain like this. What’s in my toolbox:

Prescription meds: Lyrica, Effexor and Diazepam
Supplements B12/ Vitamin C & D
Topicals: CBD cream. CBD CLINIC PRO SPORT
LEVEL 5 (worth the $)
Cannabis: I don’t get any relief from ingesting CBD alone in any strength. If I smoke cannabis with THC and CBD, it helps. I use it all day, every day. I don’t like it, but it helps. I also use edibles 10mg usually a couple of times a day. I’ve been using cannabis for quite a while, so ease into it strength wise.

OTHER: you unfortunately live in a cold climate. This does two things to neuropathy to aggravate it - the barometric pressure drops and the cold air thickens your skin. Both increase pain. I hate to be the one to tell you this, but between neuropathy and arthritis, you need to move. A lot. I know it’s the last thing you want to hear but exercise helps everything. Even hand stretches, roll your ankles around, etc and see if you can exercise as often as possible. Keep warm. Cold climates are tough.

Compression sleeves: in winter, I wear these on my calves. Some days they really help. Can be worn on arms as well.

Socks: whatever you find agrees with your sensation. Footjoy makes some nice ones.

A TENS Unit: Doesn’t have to be a true TENS unit. You can buy one on Amazon for less than $40. You apply pads to different areas and turn on the sensation. This is for areas of pain and not as effective on arms and legs for me. However, you may find it makes a difference everywhere. Just a low hum produces the best result.

Weighted blanket: these are amazing. Mine is a 20lb model. It does work. I use mine whenever I’m on the couch, which is quite a bit.

In the car I now use a gel seat due to lower back fusion and nerve issues. It helps.

HEADSPACE: this is an app which teaches meditation, as well as providing stories for listening.

SPOTIFY: all the music you need

Yoga/ exercise: it’s counterintuitive, but exercise works for pain. I was working with a trainer for a year pre-pandemic, and it’s the first thing I’m going back to after my vaccine.
Resistance bands - great for the legs. Get the loops and stretch every day. It helps

If I think of anything else, I will post. I don’t have many answers except to say I know the pain. It changed my life. Disabled and retired early. Didn’t see this coming. However, as I’ve had time now (2 years since surgeries and diagnosis), I think the best advice I can give is to kind of lean into it a bit. Sadly, it’s not going anywhere. All you can do is try and minimize it and live with it. I wish you all the best. No one deserves to be in pain. I hope some of what I’ve shared will help. Reduced sugar and eliminating alcohol helps also. Believe me, I feel for you. It will stop you in your tracks as you know. Take care of yourself. Better days are ahead:)

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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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Sounds good. I have been living with this for yrs. I’ve also been on every med meant to treat or relieve the symptoms, no luck. The only thing that made it manageable was 1 800 mg gabapentin and 1 10mg pill of percoet. I’m also a veteran so the va is no help when it comes to pain meds. 2yrs ago I had a hf10 implant again zero results. Now my new pain management person put me on naltrexone and expects me to wait 6 months to see any kind of relief🤬🤬🤬. I understand the Opidiod addiction/crisis. I just feel like every doc now is covering their as& when it comes to pain meds. Sorry if I offended anyone. Just being honest and need to vent.

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Sounds good. I have been living with this for yrs. I’ve also been on every med meant to treat or relieve the symptoms, no luck. The only thing that made it manageable was 1 800 mg gabapentin and 1 10mg pill of percoet. I’m also a veteran so the va is no help when it comes to pain meds. 2yrs ago I had a hf10 implant again zero results. Now my new pain management person put me on naltrexone and expects me to wait 6 months to see any kind of relief🤬🤬🤬. I understand the Opidiod addiction/crisis. I just feel like every doc now is covering their as& when it comes to pain meds. Sorry if I offended anyone. Just being honest and need to vent.

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@brutiss right! six months may not seem long if you are on a cruise around the world, but facing pain day in and day out for six months !!!! surely a shorter time frame to find out if a medication is working for PAIN??? J.

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