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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@givinghope

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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Replies to "Hi @bluesman1. Sorry to hear you are in so much pain. I’ve found so far that..."

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.

thank you for your reply and suggestions I will check a few of them out I love a terrible life in so much pain my hands are brutal wearing winter gloves all the time just the simple things in life that we do I have a problem with. I'm seeing a neurologist on a regular basis every six weeks trying different meds nothing has helped so far very frustrating just typing this is very painful everything I touch is like razor blades. things for your suggestions I will try some of them for sure.all the best thanks again