Living with Neuropathy
Living with neuropathy can be challenging. The pain can be debilitating, and the other symptoms limiting. One's doctor may have limited knowledge, and getting proper diagnosis and treatment can take effort. Friends and family may not understand how difficult the experience is.
One of the NCCNA's focal points is providing hope to those with peripheral neuropathy. This condition is not the end of the world! These are some ideas that may help you.
Get support
You are not alone in your struggle with peripheral neuropathy. Realizing that someone else understands and cares can be vital. Finding someone who also faces these things can help you through sympathy, understanding of your situation, inspiration, and the sharing of ideas. The NCCNA offers support groups for this purpose; find one and check it out. Check out other organizations that can help you with specific situations (such as American Diabetes Association if you are diabetic, or the Neuropathy Action Foundation if you face insurance issues).
Learn all you can
The more you know about your disease, its cause, possible treatments, and the latest developments, the better you will know how to proceed. We hope this site will prove to be a value resource to you. Check out our links and more page for other sources of information and helpful organizations, plus documents we have prepared. Explore the internet, read books and articles, join relevant organizations. Become an NCCNA memberto get our newsletter with current information.
Educate your doctors
Neuropathy is frequently misdiagnosed, and even a good diagnosis may not lead to effective treatment. Many doctors do not learn much about neuropathy at all, and with so much to keep up with, may not know of the latest treatment options. By learning all you can, you can become an advocate for yourself and others and help your doctors be of more help to you. Ask for appropriate referrals to specialists such as neurologists, podiatrists, and pain management clinics. Take someone with you to your appointments to make sure you discuss all your concerns and get your questions answered.
Try various treatments
One or two visits to our support groups will soon show that a treatment that was the greatest thing in the world for one person did absolutely nothing—or perhaps was intolerable—for another. It is important to persist in trying treatments to find what works best, and to stick with those tried long enough to get a good feel for the results.
Be careful
Neuropathy has its own hazards. Be careful of situations such as uneven ground that may cause falls. If you have reduced feeling in your feet, do not go barefoot. Be cautious with sharp materials, hot surfaces, or freezing ones. If you have weakness or poor coordination, move carefully and with help if needed. Use common sense. Don't let neuropathy limit you more than necessary, but be realistic about your abilities.
Use assistance devices
Assistance can go a long way in making life with neuropathy safe and manageable. Use railings with any steps, even one. Use grab bars and other support and aids in the bathroom. If you have poor feeling or pain from pressure, try hand controls in your car. A cane can provide reassurance when walking, and scooters or wheelchairs can help when walking isn't possible.
Don't give up!
The pain can be so intense, the losses so devastating, the obstacles so huge, the setbacks so frustrating. But you can have a good quality of life with neuropathy. A positive focus can go a long way toward helping you cope with it all. Please keep on keeping on, and reach out for a hand when necessary. You can always call, write, or e-mail us.
Symptoms | Causes | Treatments