Peripheral neuropathy, a result of nerve damage outside the brain and spinal cord, can significantly impact your daily life. Symptoms can range from numbness and tingling to severe pain, muscle weakness, and difficulty with balance. If you or a loved one is dealing with peripheral neuropathy, finding support and a sense of community can make a world of difference. This guide offers a detailed look at the best support groups, online forums, and valuable resources available to help you navigate this challenging condition.
Support Groups: Connecting with Others
Support groups provide a safe and understanding space for people with peripheral neuropathy to connect with others facing similar challenges. In these groups, you can share experiences, coping strategies, and treatment options. Early engagement with support groups can be crucial for coping with the diagnosis and managing symptoms effectively1. If you need support for a specific type of neuropathy or related symptoms, consider seeking out a specialized group. For example, there are groups specifically for those with CIDP or autoimmune neuropathy2. Here are some of the leading support groups:
- The Western Neuropathy Association (WNA) (www.pnhelp.org) is a non-profit organization dedicated to providing support for peripheral neuropathy sufferers worldwide. They offer a variety of resources, including educational materials, webinars, and a newsletter called Neuropathy Hope. The WNA emphasizes caring, support, education, empowerment, and research to help individuals cope with peripheral neuropathy.
- The Foundation for Peripheral Neuropathy (FPN) (www.foundationforpn.org) focuses on fostering collaboration among medical professionals to improve the lives of those affected by peripheral neuropathy. They offer a support group list and can help connect you with a group in your area.
- The Neuropathy Action Foundation (NAF) (http://www.neuropathyaction.org/) is committed to ensuring that neuropathy patients have access to the resources and information they need to receive individualized treatment and improve their quality of life3.
- The American Chronic Pain Association (ACPA) (www.theacpa.org) provides resources and support for individuals coping with chronic pain, including those with peripheral neuropathy4.
- The Charcot-Marie-Tooth Association (CMTA) (www.cmtausa.org) offers support and resources specifically for individuals with Charcot-Marie-Tooth disease, a type of hereditary neuropathy5.
- Dysautonomia International (www.dysautonomiainternational.org) provides support and resources for people with dysautonomia, a condition that can sometimes cause peripheral neuropathy5.
- The Minnesota Neuropathy Association (952-941-5372) 2 offers support and resources to those with peripheral neuropathy in Minnesota.
- The Neuropathy Alliance of Texas (www.neuropathyalliancetx.org) 2 provides support and resources to those with peripheral neuropathy in Texas.
Support groups can be a powerful tool for healing and understanding. By connecting with others who have peripheral neuropathy, you can gain insights into your condition and learn how to cope with its challenges. Support groups create an environment of encouragement and hope by allowing individuals to share their experiences and treatments with others who truly understand6. In addition to these national organizations, many local support groups are available throughout the country.
Online Forums and Communities
Online forums and communities offer another way to connect with others who have peripheral neuropathy. These platforms provide the convenience of accessing support from anywhere with an internet connection, offering anonymity and 24/7 availability8. Here are a few online resources:
- Neuropathy Commons (neuropathycommons.org) is an online community where patients can connect with each other and learn about the latest research and treatments9.
- The Blood Cancer UK Forum (forum.bloodcancer.org.uk) has threads dedicated to peripheral neuropathy, where members share their experiences and offer support8.
- Facebook groups such as “Peripheral Neuropathy Support Group” and “Living with Peripheral Neuropathy” provide a platform for individuals to connect, share information, and find support.
- The International Waldenstrom’s Macroglobulinemia Foundation (iwmf.com) offers online resources for individuals with peripheral neuropathy, including webinars and presentations on managing the condition11.
| Organization | Description | Website |
|---|---|---|
| The Western Neuropathy Association | Provides support, education, and resources for peripheral neuropathy sufferers worldwide. | www.pnhelp.org |
| The Foundation for Peripheral Neuropathy | Fosters collaboration among medical professionals to improve the lives of those affected by peripheral neuropathy. | www.foundationforpn.org |
| The Neuropathy Action Foundation | Dedicated to ensuring neuropathy patients have access to the resources and information they need to receive individualized treatment. | http://www.neuropathyaction.org/ |
| The American Chronic Pain Association | Provides resources and support for individuals coping with chronic pain, including those with peripheral neuropathy. | www.theacpa.org/ |
| The Charcot-Marie-Tooth Association | Offers support and resources specifically for individuals with Charcot-Marie-Tooth disease. | www.cmtausa.org |
| Dysautonomia International | Provides support and resources for people with dysautonomia, a condition that can sometimes cause peripheral neuropathy. | www.dysautonomiainternational.org |
| The Minnesota Neuropathy Association | Offers support and resources to those with peripheral neuropathy in Minnesota. | |
| The Neuropathy Alliance of Texas | Provides support and resources to those with peripheral neuropathy in Texas. | www.neuropathyalliancetx.org |
| Neuropathy Commons | An online community where patients can connect with each other and learn about the latest research and treatments. | neuropathycommons.org |
| The Blood Cancer UK Forum | Has threads dedicated to peripheral neuropathy, where members share their experiences and offer support. | forum.bloodcancer.org.uk |
| Facebook Groups | Various groups, such as “Peripheral Neuropathy Support Group” and “Living with Peripheral Neuropathy,” provide platforms for individuals to connect and find support. | facebook.com |
| The International Waldenstrom’s Macroglobulinemia Foundation | Offers online resources, including webinars and presentations on managing peripheral neuropathy. | iwmf.com |
Resources Offered by Organizations
Several organizations offer valuable resources for people with peripheral neuropathy. These resources include educational materials, financial assistance, and research updates. Here are some key organizations and their offerings:
- The Foundation for Peripheral Neuropathy provides a comprehensive resource library with brochures, newsletters, and other educational materials12. They also offer a research registry for patients to participate in clinical trials and research studies12.
- The Neuropathy Action Foundation offers educational materials and resources on their website, including information on IVIG and other treatments3.
- The National Institute of Neurological Disorders and Stroke (NINDS) (www.ninds.nih.gov) provides information on peripheral neuropathy, including causes, symptoms, and treatment options4.
- The UCSF Neuropathy Center (www.ucsfhealth.org/adult/special/n/53904.html) coordinates education, support, and outreach programs for patients with peripheral neuropathy4.
- The National Organization for Rare Disorders (NORD) (www.rarediseases.org) provides support and information for people with rare diseases, including peripheral neuropathy4.
- WinSanTor (winsantor.com) is a clinical-stage biotechnology company focused on the discovery and development of treatments for peripheral neuropathies. They provide information on peripheral neuropathy research and treatments on their website14.
Tips for Finding Support
Here are some tips for finding support and community:
- Talk to your doctor. Your doctor can be a valuable resource for finding local support groups and other helpful resources.
- Search online directories. Websites like the Foundation for Peripheral Neuropathy’s website (www.foundationforpn.org) offer directories of support groups.
- Connect with others online. Online forums and social media groups can be a great way to connect with others who understand what you’re going through. Consider joining platforms like Neuropathy Commons (neuropathycommons.org) or Facebook groups dedicated to peripheral neuropathy.
- Attend conferences and events. Many organizations, such as the Foundation for Peripheral Neuropathy and the Western Neuropathy Association, host conferences and events for people with peripheral neuropathy. These events provide an opportunity to learn about the latest research and treatments and connect with others.
- Understand and express your emotions. Receiving a diagnosis of peripheral neuropathy can bring about a range of emotions, such as fear, anger, confusion, and sadness. It’s important to understand and express these emotions in a healthy way. Consider talking to a friend or family member, attending a support group, writing in a journal, or talking to a therapist1.
- Exercise regularly. Exercise can be beneficial in managing peripheral neuropathy. It can help reduce pain, improve muscle strength, and control blood sugar levels, which is particularly important for those with diabetic neuropathy15. Consider incorporating activities like walking, swimming, and yoga into your routine.
Conclusion
Living with peripheral neuropathy can present unique challenges, but remember that you’re not alone. By connecting with others, accessing valuable resources, and staying informed, you can find the support and community you need to manage your condition and improve your quality of life. Support groups, both in-person and online, offer safe spaces to share experiences and learn from others facing similar challenges. Organizations like the Foundation for Peripheral Neuropathy and the Neuropathy Action Foundation provide educational materials, research updates, and opportunities to participate in clinical trials. Remember that seeking support is a sign of strength, and there are people who care and want to help you on your journey with peripheral neuropathy.
Sources:
1. How to Deal With a New Peripheral Neuropathy Diagnosis – WinSanTor, https://winsantor.com/how-to-deal-with-a-new-peripheral-neuropathy-diagnosis/
2. Neuropathy Support Groups | NeuropathyCommons, https://neuropathycommons.org/content/neuropathy-support-groups
3. Neuropathy Action Foundation | Awareness. Education. Empowerment., http://www.neuropathyaction.org/
4. Links | Neuropathy Action Foundation, http://www.neuropathyaction.org/links/index.htm
5. Nonprofit Organizations Related to Neuropathy | NeuropathyCommons, https://neuropathycommons.org/patient-support/nonprofits-support-groups
6. Western Neuropathy Association: HOME, https://pnhelp.org/
7. Find A Support Group – Neuropathy Action Foundation, http://www.neuropathyaction.org/neuropathy_101/find_a_support_group.htm
8. Peripheral neuropathy – Living with and after blood cancer, https://forum.bloodcancer.org.uk/t/peripheral-neuropathy/4704
9. Soothe Your Aching Feet: Understanding Peripheral Neuropathy Symptoms | Aquacare/Fitness Forum Physical Therapy, https://aquacarephysicaltherapy.com/health_articles/soothe-your-aching-feet-understanding-peripheral-neuropathy-symptoms/
10. IgM MGUS with Peripheral Neuropathy – Recent diagnosis – Blood Cancer UK Forum, https://forum.bloodcancer.org.uk/t/igm-mgus-with-peripheral-neuropathy/10695
11. Presentations for Peripheral Neuropathy – International Waldenstrom’s Macroglobulinemia Foundation, https://iwmf.com/presentations-for-peripheral-neuropathy/
12. Resource Library – The Foundation for Peripheral Neuropathy, https://www.foundationforpn.org/resource-library/
13. Peripheral Neuropathy | National Institute of Neurological Disorders and Stroke, https://www.ninds.nih.gov/health-information/disorders/peripheral-neuropathy
14. Online Resources for Peripheral Neuropathy Patients – WinSanTor, https://winsantor.com/peripheral-neuropathy-online-resources/
15. Peripheral neuropathy – Diagnosis and treatment – Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067
16. 7 Hacks for Peripheral Neuropathy – WinSanTor, https://winsantor.com/7-hacks-for-peripheral-neuropathy/