Chronic inflammatory demyelinating polyneuropathy (CIDP) is a long-term neurological disorder that targets your body’s nerves.
Anyone can get CIDP, but it’s most common in older adults and more common in men. About 60,000 people in the U.S. may have the condition, but it’s hard to know for sure. CIDP isn’t easy to diagnose.
CIDP is closely related to Guillain-Barre syndrome (GBS), but they're not the same. Both are nerve problems, and both cause symptoms such as weakness and numbness. But GBS usually comes on days or weeks after you have an illness, such as a stomach bug. CIDP isn’t linked to illness. With GBS, once treated, you usually recover fairly quickly. CIDP, on the other hand, tends to be a longer-term problem. In rare cases, if you don’t recover from GBS, you may develop CIDP.
What Are the Symptoms of CIDP?
Symptoms of CIDP aren’t the same for everyone. They can vary based on the type of CIDP you have. You may be tired and have areas of numbness and pain. It can slow your reflexes and make your arms and legs feel weak.
What's the first sign of CIDP?
The symptom you’re most likely to notice first is muscle weakness that worsens over two months or more. Weakness tends to happen on both sides of your body in the muscles of your:
- Hips and thighs
- Shoulders and upper arms
- Hands
- Feet
Other symptoms of CIDP
CIDP can also cause these symptoms:
- Atrophy, a loss of muscle mass.
- Paresthesia, a condition that causes a loss of feeling, tingling, or prickling in your fingers and toes.
- Clumsiness. You have trouble with balance and control.
- Mobility loss, or problems getting around physically.
- Neuropathic pain, or nerve pain caused by nervous system problems.
- Deep tendon problems, leading to loss or weakness.
Although uncommon, you could also have these symptoms:
- Dysphagia. You have trouble swallowing.
- Diplopia, or double vision, which is usually temporary.
How long do symptoms last?
You have to have symptoms for at least eight weeks for CIDP to be considered the cause.
What Are the Types of CIDP?
There are different types of CIDP based on symptoms of the condition. They include:
- Typical CIDP. Most people with the condition have this form. It impacts both sides of your body, causing muscle weakness and unusual sensory symptoms.
- Multifocal motor neuropathy. This type of CIDP causes muscle weakness in various areas of the body, known as asymmetric muscle weakness.
- Lewis-Sumner syndrome. With this form of CIDP, you have asymmetric muscle weakness and sensory issues.
- Pure sensory CIDP. This type of CIDP causes numbness, pain, and problems with keeping your balance and walking normally. You won’t have muscle weakness.
- Pure motor CIDP. You’ll have muscle weakness on both sides of your body and reflex loss, but this type of CIDP doesn’t involve sensory symptoms.
Doctors usually group CIDP into three categories:
- Progressive, meaning the condition worsens over the years.
- Recurrent, or symptoms come and go.
- Monophasic, which means you have the disease only once, typically lasting one to three years.
What Causes CIDP?
Experts aren’t sure why people get this disorder. But they know it’s caused by inflammation of your nerves and nerve roots. The swelling can destroy the protective covering around your nerves, known as myelin. That can hurt nerve fibers and slow your nerves’ ability to send signals. This can cause weakness, pain, fatigue, and numbness.
Is CIDP contagious?
No. You can’t pass CIDP to another person or catch it from someone else.
CIDP Risk Factors
Doctors aren’t sure exactly what triggers CIDP. They haven’t found a genetic connection or a link to an infection, as is the case with Guillain-Barre syndrome.
While anyone can get CIDP, people in their 50s and 60s, as well as men, are more likely to develop the condition.
How Is CIDP Diagnosed?
There’s no test to diagnose CIDP. Instead, your doctor will ask you questions about your symptoms, such as when they started and how they feel. They’ll do a thorough physical examination and may also recommend tests to get a better idea of what’s going on with your nerves and to rule out other causes.
In some cases, doctors can’t be completely sure it’s CIDP, but they may go ahead and start treatment. If the symptoms improve, that’s strong evidence it’s CIDP.
Tests for CIDP
Your doctor may suggest these tests to confirm or rule out a CIDP diagnosis:
- Blood and urine tests
- A nerve conduction study and an electromyogram to test for myelin damage
- A lumbar puncture, which checks for high levels of a protein linked to CIDP
- A nerve biopsy to spot nerve changes
- An MRI, which can show nerve root swelling
What to know when you’re diagnosed
Early treatment is key. It can help prevent nerve damage. This can help stop symptoms from becoming severe, which can happen over several years without treatment. Many people who don’t get treatment (1 in 3) eventually need to use a wheelchair.
How to deal with a diagnosis
A diagnosis of CIDP can feel overwhelming, and you probably have lots of questions for your doctor. Before your next doctor’s visit, think about what you want to ask and write down your questions. You may want to ask about treatments, side effects, and costs. If it would be helpful, consider taking a friend or family member with you to your appointment to ask questions and help you remember the details from your doctor. Write down what your doctor mentions -- next steps, follow-up appointments, tests, medicines, and other treatments.
Your CIDP Care Team
The team helping treat or manage your CIDP should include:
- Your primary care doctor for diagnosis and coordination of care.
- A neurologist for specialized treatment and care.
- A physical therapist to regain strength and coordination
- An occupational therapist to learn new ways of performing daily tasks with an illness
- A mental health professional to discuss your feelings surrounding your CIDP diagnosis
Your CIDP care team may also require other medical specialists as needed for your individual symptoms and needs. Those may include a pain specialist, dermatologist, or social worker (case manager).
CIDP Treatment
Most people need treatment. And the sooner you begin it, the better the chance of a complete recovery. Sometimes symptoms go away for a long time but come back later. Treatment may include:
Medications for CIDP
- Corticosteroids. These medications bring down inflammation and slow the immune system.
- Immunotherapy. These drugs interrupt your immune system to help stop it from attacking the myelin.
- Biologics. A biologic therapy, Vyvgart (efgartigimod alfa and hyaluronidase-qvfc), was approved in 2024 by the FDA to treat CIDP.
Procedures for CIDP
- Intravenous immunoglobulin (IVIG). Your doctor may give you injections of concentrated antibodies from healthy people to slow your body’s immune response.
- Plasma exchange (PE). This treatment involves filtering a part of the blood called plasma through an IV to remove antibodies.
- Stem cell transplant. In rare cases, your doctor may inject healthy stem cells (either yours or donated by someone else) to "reset" your immune system.
Clinical trials
Clinical trials are a critical part of developing new treatments and therapies for medical conditions. These studies test new drugs, medical devices, or methods that can improve your symptoms and provide a better quality of life with CIDP. Ask your doctor for information about clinical trials for CIDP or look for online resources.
Natural or alternative treatments for CIDP
There are no approved alternative or natural treatments for CIDP.
Home remedies for CIDP
There are no home remedies to cure CIPD, but these habits may help you manage your symptoms:
Therapy. Your doctor may recommend physical and occupational therapy. Therapy could focus on your lower body, how you walk (gait), and your hands.
Exercise. Moderate exercise may give you more energy. It can help you rebuild strength and function, stop further decline, and support your overall health. It can also boost your heart health, balance, flexibility, and ease stiffness. A rehab specialist will guide your exercise program and may suggest stationary cycling or water exercises. You can also find online exercise resources at home. Remember not to overdo it. Exercise should feel challenging but not exhausting.
Diet. There's no evidence a certain diet helps with CIPD. But following a nutritious and balanced plan may help you avoid extra weight that could strain your muscles and cause further disability.
CIDP Progression
CIDP may not progress as expected. Symptoms of the condition may start slowly or rapidly, come and go, or worsen over time.
What are the complications of CIDP?
Other health problems that you could have with CIDP include:
- Pain
- A lasting loss of sensation in your body
- Lasting weakness or paralysis
- Injuries that happen repeatedly, or you don’t notice them
- Medication side effects
Living With CIPD
A CIDP diagnosis will mean regular appointments with your doctor to track your symptoms and how well treatment is working. If the illness affects your breathing, call 911 or go to your nearest emergency room.
You may find your symptoms are manageable sometimes and hard to deal with at other times. If over-the-counter painkillers aren’t enough to treat your pain from CIDP, your doctor may prescribe other medications.
Support for CIDP
Life with CIDP may also take a toll on your mental health. If you are having feelings of anxiety or depression, you may want to seek professional help from a mental health specialist. You may also improve your mental health by ensuring you have a community of supporters, including your friends, family, health care team, and other members of the CIDP community.
Patient organizations like GBS/CIDP Foundation International and Ben's Friends can connect you with other people living with CIDP.
You and your loved ones can also find support and resources for CIDP through:
What's the Prognosis for CIDP?
The outlook for CIDP depends on your age at diagnosis (younger people fare better), the type you have, how early into the disease you received a diagnosis and started treatment, and how you respond to treatment.
About 90% of people with CIPD get better with treatment. For about 50% of them, symptoms will return. Those who don’t get treatment may have permanent nerve damage.
Can CIDP be cured?
You may recover entirely from CIDP. Some people do, but they may have symptoms from nerve damage, such as numbness and weakness, for the rest of their lives.
What to expect with CIDP
Talk to your doctor about what to expect with the condition. With treatment, you can get better from CIDP and will likely have a similar life span as someone without CIDP.
Can CIDP Be Prevented?
No. Researchers are still studying what prompts CIDP, so for now, there’s no way to stop it from happening.
Takeaways
- Chronic inflammatory demyelinating polyneuropathy (CIDP) is a condition that attacks your nerves.
- The main symptom of CIPD is worsening muscle weakness.
- CIPD treatments include medications such as corticosteroids and immunotherapy, and procedures such as antibody injections and plasma exchange.
- With early treatment, most people recover from CIDP.
CIDP FAQs
What's the main cause of CIDP?
Researchers are still looking into the causes of CIDP. We do know that inflammation of your nerves and nerve roots causes the symptoms. This swelling damages your myelin, which protects your nerves.
Is CIDP curable?
With treatment, around 90% of people with CIDP improve, although around half will relapse.
Can you walk with CIDP?
Usually. But one symptom of CIDP can be losing your ability to walk due to muscle weakness.
Is CIDP life threatening?
No. Life expectancy with CIDP is the same as it is without the disease.
Is CIDP a form of MS?
No. Both conditions can have similar symptoms, and involve damage to your myelin. But MS affects your central nervous system, including your brain and spinal cord, which aren't affected by CIDP.