Finding support for Polyneuropathy? Connect with people like you.

Living with Polyneuropathy is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Polyneuropathy is damage or disease affecting peripheral nerves) in roughly the same areas on both sides of the body, featuring weakness, numbness, pins and needles, and burning pain. It usually begins in the hands and feet and may progress to the arms and legs; and sometimes to other parts of the body where it may affect the autonomic nervous system.

It may be acute (appearing suddenly, progressing rapidly and resolving slowly) or chronic (emerging and developing gradually). A number of different disorders may cause polyneuropathy, including Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy(CIDP) and Charcot-Marie-Tooth (CMT) which are predominantly motor peripheral neuropathies. Although poly-neuropathy is common, it most often is the result of “something else”. Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Charcot-Marie-Tooth (CMT) are known disease are either hereditary or autoimmune in nature and are “rare”.

Guillain-Barré syndrome (GBS) is a rare neurological disorder in which your immune system mistakenly attacks part of the peripheral nervous system—the network of nerves located outside of the brain and spinal cord. GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving you unable to breathe independently. Fortunately, most people eventually recover from even the most severe cases of GBS. After recovery, some people will continue to have some degree of weakness.

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that involves progressive weakness and reduced senses in the arms and legs. It is caused by damage to the fat-based protective covering on nerves called the myelin sheath. Symptoms of CIDP are:

  • Tingling or no feeling in fingers and toes
  • Weakness of arms and legs
  • Loss of deep tendon (muscle stretch) reflexes
  • Fatigue or feeling tired
  • Unusual feelings in the body

CIDP can happen at any age and in both genders but is more common in young adult men. CIDP is closely related to Guillain-Barré syndrome (in which the immune system mistakenly attacks the body) and is considered the long-term part of that disease.

Charcot-Marie-Tooth disease (CMT) is one of a group of disorders that cause damage to the peripheral nerves—the nerves that transmit information and signals from the brain and spinal cord to and from the rest of the body, as well as sensory information such as touch, back to the spinal cord and brain.  CMT also can directly affect the nerves that control the muscles. 

LivingWithPolyneuropathy.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

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Latest Discussions

  • Looking For Your Polyneuropathy Stories!
    by ModSupport on January 11, 2024

    @trust_level_0 Dear Polyneuropathy Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that will highlight the benefits of the Ben’s Friends online communities. We would like this to come directly […]

  • SCIG availability
    by Jules1 on September 25, 2023

    Hi. Is anyone in the UK on SCIG in the North Hampshire area? 1 post – 1 participant Read full topic

  • Signs your sensory CIPD is gaining motor loss
    by GregoryGoat on September 16, 2023

    Hello, I have mainly sensory CIDP, MADSAM variant, but feel I may be starting with some motor loss in my legs. I have broad sensory loss, at some level, almost over my entire body. No luck from IVIg or subcutaneous Ig. Symptoms are increasing. My first [clear] signs and then diagnosis of CIDP was a year ago, August 2022. I also have several other autoimmune disorders including Crohn’s Disease, Hashimoto’s, and vitiligo, with the last one being the only one I have had for years. Crohn’s […]

  • Muscle pain in legs
    by Jules1 on August 30, 2023

    Hi. I was diagnosed in July with CIDP. When I went into hospital I was almost paralysed but IVIG worked really well and I walked out a week later. I’ve just had a second round and due for a third next week. I have quite a bit of pain in my thighs, especially in the morning and after exertion. Will this go away? Is it just my muscles getting used to being used again or is it here to stay? TIA 8 posts – 4 participants Read full topic

  • 📢 Calling mothers of children with rare diseases of all ages
    by ModSupport on August 12, 2023

    Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the community with other families who are affected. 70% of rare genetic disorders start in childhood. Similar to Ben’s Friends other support communities, […]

  • 7 Things to Look for When Choosing a Doctor
    by BF_Writer on May 4, 2023

    Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. Since many of our members deal with rare diseases, they often encounter medical practitioners who […]