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Peripheral Neuropathy - Anyone else?

Neuropathy | Last Active: Aug 9, 2023 | Replies (110)

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@suzed

I went food shopping today, and the pain was so great, could barely walk. The entire foot feels broken, and can barely think. It's getting so bad, I don't want to go out.
The pain specialist has me on Pregabalin, building up to higher doses, but that only stops the pain temporarily. Do they not have any other solution? He knew I had CRPS and neuropathy months ago, and this long delay only worsened my condition to the point of my being permanently crippled.
Why can't I be helped? Lidocaine patches are a joke, and haven't even been referred to a specialist who can insert spinal cord stimulator device. This has ruined my life and independence. At my wit's end.

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Replies to "I went food shopping today, and the pain was so great, could barely walk. The entire..."

Are you under the care of a neurologist?
Do you have any past problems taking opioids? I have a prescription for Percocet 7.5 mg. I can take 1 1/2 pills per day. Since I switched to Tegretol for my neuropathy, and have been going to PT twice a week, I usually only take one pill per day. When my pain really flares up from activity, I have Prednisone 10 mg that I can start taking. I did that this morning, and will take it for 5-6 days until my hand pain ( from gardening) calms down.
All these solutions have come over time, working with a neurologist, pain doctor and rheumatologist. It’s like a part time job, keeping my pain and neuropathy symptoms under control.
It sounds like you need to call your doctor’s office today and tell them exactly what you just wrote. You need to be seen, re-evaluated, and get a new plan. Don’t feel bad about doing that. The doctor can’t help you if he doesn’t know, so keep working with them until you find the right solution. And show him this!
I have idiopathic length-dependent small fiber poly neuropathy, and (maybe) fibromyalgia. I am a retired nurse.

You should see a neurologist, preferably one who subspecializes in peripheral neuropathy. For a temporary quick fix, soaking your feet in epsom salts or applying Voltaren cream or gel has helped some people. Some people have benefited from alpha lipoic acid, which requires a doctor's prescription. These may or may not work for you. I have found that wearing thin socks is better for me than wearing thick ones, although some people swear by thick hiking socks. If you can get to the underlying cause of your neuropathy, that would be best, because you might be able to get treatment for it. In too many cases there is no cure, so you have to learn to manage your symptoms with proper diet, exercise, sleep, and destressing. It's best to be as proactive as possible with your health. It may mean such things as meditating, researching online, finding a specialist on your own, or changing doctors. You are more than your peripheral neuropathy.

Alpha lipoic acid (600 mg capsules) is not a prescription substance in the US. Where are you located? You can get it online or at any drug store or vitamin shop.

Hi, I have written in before, and have serious peripheral neuropathy, and osteoarthritis in knees so have some troubles ...However, I have found that with AOR High Dose R Lipoic-acid, twice daily, with pregabalin 150 mg morning, noon and bedtime, no burning, tingling pain, etc, and feel absolutely no pain when laying down. My problem is the soles of my feet, as the previous writer said, terrible pain when walking, enough to make me stop every fifty or so steps, it is so bad it brings (almost) a tear to my eye...I cannot find out if it is PN or something else, plantar fascitis has been ruled out, so doctor just says, oh, must be your neuropathy.. Any suggestions, I have tried any number of socks, devices, creams, gels, etc, sandals with no socks best for me.

For the treatment of Peripheral Neuropathy, has anyone experienced collaborative communication and healthcare in a healthcare system or organization.

Collaboration between Primary Care Physicians, Neurologists, Dietitians including supplements, and others as needed?

Hello @suzed, and welcome to Mayo Clinic Connect. You will notice that I have moved your post into a discussion you have shared already. You can find your post here:
- Peripheral Neuropathy - Anyone else?: https://connect.mayoclinic.org/discussion/peripheral-neuropothy/

You mention that you have yet to find a doctor to diagnose you. Have you heard about our Mayo Clinic in London location? Here is some information in the event you'd like to pursue requesting an appointment: https://www.mayoclinichealthcare.co.uk/