Members from the CIDP community are sharing their experiences.

Read the stories that people from the CIDP community have shared, from their journey to diagnosis to their hopes for the future. Each story features the perspective and experience of someone living with CIDP.

“My story is that I am fed up and feel like no one is listening.”

“I was diagnosed with CIDP in 2022. I am frustrated because I have been struggling since 2021. I am losing the ability to walk. I am in excruciating pain 24 hours a day. I have muscle spasms, and I lose sensation in my feet, my arms, and my legs. My story is this: I am fed up and feel like no one is listening. I can’t even type this to you. I have to use voice text. I can’t go back and fix it because I can’t use my fingers to type. I can’t go to the bathroom without pain. I can’t even put my own clothes on without feeling pain.”

“It started in my arms, with deep pain in both arms, like shards of glass and fiberglass insulation.”

“Over a 5-year period, I suffered from a series of increasingly severe symptoms. It started in my arms, with deep pain in both arms, like shards of glass and fiberglass insulation. The MRIs and X-rays led to 2 neck surgeries. These surgeries relieved some symptoms, but some issues kept progressing. I had numbness in my feet that progressed into loss of feeling in my feet, then weakness in my legs, and balance issues. The balance issues and numbness led to falls. I went through EMGs, blood tests, and imaging. After a year, my neurologist came to the diagnosis of CIDP.”

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“I knew something was very wrong when she tested my reflexes, but my leg didn't move.”

“After 6 months of hospital stays, doctor visits, countless blood tests, MRIs, CT scans, ultrasounds, X-rays, and nuclear medicine tests, I finally found a neurologist that was able to diagnose me with a rare disease that I had never heard of. She gave me a physical examination, an EMG, and a spinal tap. I knew something was very wrong when she tested my reflexes, but my leg didn't move. I'm receiving treatment but it doesn't seem to be helping much. I haven't been able to work in almost a year. I'm a chef, so I have to be on my feet all day, which can't happen right now. I have balance problems, extreme fatigue, and trouble walking. I was hoping to talk to some other people that may be dealing with a similar situation. Maybe there is another treatment option or possibly physical therapy.”

“It’s frustrating not knowing what the future holds...”

“I was diagnosed with CIDP about 3 years ago. At that point, I was experiencing numbness in my feet. As the days progressed, I had severe fatigue and became weaker, which was frustrating because I had always been an active person. I have been getting treatment for about a year and a half now. While I can still drive and shop and get to my appointments independently, I am having trouble traveling and even standing for any period of time. It's frustrating not knowing what the future holds… but I imagine you take it one day at a time.”

Members from the CIDP community are sharing their experiences.

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