Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

@snagydude

I have also had problems with gabapentine and got off of a 2,000 mg dosage. I fully agree with stress as an issue. The stress can be psychological, physical, and even environmental with weather changes. For me (and it is all different for all of us) I find a little relief from a cream that my neurologist has compounded at a pharmacy. 5% lidocaine, 5% ketamine, 5% gabapentine. My concern with this compound is that my body will adjust to it and it will no longer remain effective. I put up with alot and use it only as a last resort. Keeping feet and hands warm is a must. I've tried all the meds but continue to try different B vitamins and combinations of essential oils mixed with THC or CBD. worked with ACL and various other herbs or amino acids. Keep trying, don't give up. AND keep notes on everything, because you can get confused on what you have or have not tried and for how long.

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So glad you wrote this - I, too, use a cream and need to have the 5% ketamine added-everything else is pretty much the same - my primary doctor was not sure how much to have added so I can tell her 5% ketamine. I also take B vitamins trying to slow it down - have any of the THC or CBD's worked?

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@onolaura

I have Perepheral Neuropathy in both feet. I found a chiropractor that does MLS laser treatments. I have gotten slightly better. Before these treatments every pair of shoes hurt and I had a hard time going barefoot. My shoes are now more comfortable and going barefoot is not a problem. Also my lower back would hurt if I stood too much. That is almost completely gone. I know this won’t help everyone. I thought it was worth a try.

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What is MLS laser ? I went through 13 low light lazer treatments; but, I cannot see any improvement in the pain level

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@bettyg81pain

What is MLS laser ? I went through 13 low light lazer treatments; but, I cannot see any improvement in the pain level

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It’s called deep tissue laser therapy. It increases blood flow. I do it 3 times a week for 10 weeks. You have to find a chiropractor that does this. This chiropractor came from the Palmer school. These chiropractors have more schooling and training. It has helped.

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@cher27

Thank you. I am on 1800mg of Gabapentin for my PN. I guess it helps. I am frustrated. I just developed a wicked case of Tinnitus in one ear, about 45 days ago. MRI tomorrow. I think the high pitched buzz is driving me a bit crazy too!

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I've had tinnitus for years with Menieres . Helps to be very careful with sodium intake and caffeine. Both raise fluid levels in the ears. for me anyway!

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Has anyone gone to a pain management doctor? Have they helped? Has anyone gone to the Mayo Clinic for their neuropathy?

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@johnmacc

Hi guys. My pn is in my feet. Gabba helps me thru the day when I'm putting load on my feet. I'm now tapering down a bit at nite since the load is less. If I really need to I will frb 4% Lidocaine on my feet and the pain stops completely for a while. I used to have it compounded thru my podiatrist for $40 but now I get it at Walgreens for $5 and it works great if I need it. Johnmacc

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What is the name of the $5 product you get at Walgreens?

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In the morning my feet don't burn and are not swollen. When i get up they start to swell and burn. When I sit on the bar stool to eat, they swell really bad. Anytime I have pressure against the back of my legs it's when it is the worst. I have seen a heart doctor and a neurologist, and everything checked out fine. Hand EKG sonogram on heart. Blood test, sonogram and EMG on legs. I'm not sure who to see next. Very frustrating. March 2023.

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@earlt

In the morning my feet don't burn and are not swollen. When i get up they start to swell and burn. When I sit on the bar stool to eat, they swell really bad. Anytime I have pressure against the back of my legs it's when it is the worst. I have seen a heart doctor and a neurologist, and everything checked out fine. Hand EKG sonogram on heart. Blood test, sonogram and EMG on legs. I'm not sure who to see next. Very frustrating. March 2023.

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Hi @earlt, Welcome to Connect. I also have small fiber peripheral neuropathy but don't have the burning pain, just some numbness and tingling. I have swelling in my legs during the day and was diagnosed with lymphedema for which I have to wear compression socks every day. They control the swelling during the day but do make my legs feel a little squished and tight. I was diagnosed after having the blood flow test on the legs looking for issues but they didn't find one so my Mayo Clinic cardiologist ordered a lymphoscintigram. Mayo Clinic has some information on the topic here - https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687.

Have your doctors mentioned or looked for possible problems with your lymph system?

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@littlep

What is the name of the $5 product you get at Walgreens?

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Pain relief gel or cream with 4% lidocaine

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@johnbishop

Hi @earlt, Welcome to Connect. I also have small fiber peripheral neuropathy but don't have the burning pain, just some numbness and tingling. I have swelling in my legs during the day and was diagnosed with lymphedema for which I have to wear compression socks every day. They control the swelling during the day but do make my legs feel a little squished and tight. I was diagnosed after having the blood flow test on the legs looking for issues but they didn't find one so my Mayo Clinic cardiologist ordered a lymphoscintigram. Mayo Clinic has some information on the topic here - https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687.

Have your doctors mentioned or looked for possible problems with your lymph system?

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Thank you for the information. I will ask my doctor about doing that. It is pure anguish going through this. I have seen so many people going through this. I didn't know so many people had this problem. I will stay with this forum. It is the best one I have found.
Thanks again.
Conrad.

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