#cidp

[redroses07]

The worst part about being chronically ill is constantly feeling like you are unworthy of love.

[shapedforfighting]

The hardest part of coming to terms with having an autoimmune disease for me has been recognizing and accepting that I can no longer do everything I want to do. Nor everything I may want to do in the future. I can't have it all anymore. I have to choose.

[coffee-n-bagels-comic-universe]

I know that people aren't here for my real life situation, but I'm back in hospital (a different and better hospital) for more Ivig treatment, I know the writing says 24/06/24 but the cannula was put in my hand yesterday

[cidpmemoir]

Wake up around 5am drenched in sweat. Literally peel my shirt off of me and grab a new one. Lay back down on a damp pillow, damp comforter, damp sheets. I can't wake my sleeping partner, so I just try to go back to sleep...but my skin is sticky, my hair is disgusting, matted, and sweaty.

With the covers off of me, I'm freezing. It's better with them on, but there is no way I'm able to go back to sleep under these circumstances.

That's unfortunate because waking up sweating is VERY exhausting for no reason at all.

If I get up, I need to shower. And showering is an even more exhausting activity. So I'm just laying here, trying to decide what to do.

There's no winning with chronic illness. I start my day like this most of my days. Waking up on the wrong side of the bed is a daily occurrence for people with chronic illness.

The crazy part is aside from writing this post, no one would know..this is such a normal part of my life I wouldn't even mention it to anyone.

[fandomangel]

I just wanted to let you guys know where I've been for the last 3 years. This video explains everything. I also want you all to know that I have missed you and want to start working on stuff again but it's going to take time.

That all being said I have released some new merch. It's some cool stuff if I do say so myself. (Though I might be a little biased.) I hope you all enjoy it as much as I enjoyed making them.

[oleander-teacup]

hey cidp gang. my dad was officially diagnosed after suspecting for several years just a few months ago and is having a really hard time with coming to terms with needing a mobility aid.

what would you suggest for easing someone into using a mobility aid? as someone else with autoimmune issues i use braces galore but i dont feel weird about using them because i know they help me to like. literally walk. so i dont exactly know where he's coming from here. any advice?

[redroses07]

yes. I do not want you to pity me because I am disabled. I’m a person just like you, I just need a little extra help sometimes.

Say it with me! Wheelchairs aren’t sad! Mobility aids aren’t sad! Mobility aids are instruments of freedom!

[shamistate]

Shamis Tate on How Autoimmune Diseases Can Lead to Nerve Damage

Autoimmune diseases are conditions in which the immune system mistakenly attacks the body’s own tissues. While these diseases can affect different parts of the body, they often target the nervous system, leading to nerve damage. Dr. Shamis Tate, a distinguished neurologist specializing in neuropathy and nerve damage, explains how autoimmune diseases contribute to nerve problems and what can be done to manage them.

Understanding Autoimmune Diseases and Their Impact on Nerves

Autoimmune diseases occur when the immune system, which is supposed to protect the body from harmful invaders like bacteria and viruses, mistakenly attacks healthy tissues. This can lead to inflammation, damage, and dysfunction in various organs and systems, including the nervous system.

How Autoimmune Diseases Affect the Nervous System

When the immune system attacks the nervous system, it can cause:

Inflammation of nerves – Swelling and irritation of the nerves disrupt normal function.

Loss of the protective myelin sheath – Many autoimmune diseases damage the myelin sheath, which protects nerve fibers and helps in signal transmission.

Direct nerve cell damage – The immune system may attack the nerve cells themselves, leading to loss of function.

Disrupted communication – Damaged nerves struggle to send and receive signals, leading to pain, weakness, or numbness.

Common Autoimmune Diseases That Cause Nerve Damage

Several autoimmune diseases can contribute to nerve damage. Here are some of the most common:

1. Multiple Sclerosis (MS)

MS is a condition in which the immune system attacks the central nervous system (brain and spinal cord), damaging the myelin sheath around nerve fibers. This leads to symptoms such as muscle weakness, vision problems, numbness, and difficulty with coordination.

2. Guillain-Barré Syndrome (GBS)

GBS is a rare disorder where the immune system attacks the peripheral nerves. It often starts with weakness or tingling in the legs and can progress to full-body paralysis. Early treatment is crucial to prevent severe complications.

3. Lupus (Systemic Lupus Erythematosus)

Lupus is an autoimmune disease that can affect multiple organs, including the nervous system. It can cause nerve pain, seizures, memory problems, and even peripheral neuropathy (nerve damage in the hands and feet).

4. Rheumatoid Arthritis (RA)

RA is known for causing joint inflammation, but it can also lead to nerve damage. The inflammation from RA can put pressure on nerves, leading to conditions like carpal tunnel syndrome.

5. Type 1 Diabetes

Although diabetes is often associated with blood sugar control, Type 1 diabetes is an autoimmune condition. Over time, high blood sugar levels and autoimmune attacks on nerves can cause diabetic neuropathy, leading to numbness, pain, and weakness in the limbs.

6. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

CIDP is a long-term condition similar to GBS, where the immune system damages the myelin sheath of the peripheral nerves. This results in progressive weakness, numbness, and difficulty in movement.

Symptoms of Nerve Damage from Autoimmune Diseases

The symptoms of nerve damage caused by autoimmune diseases can vary depending on which nerves are affected. Some common symptoms include:

Tingling or burning sensations in the hands and feet

Numbness or loss of sensation

Muscle weakness or paralysis

Sharp or shooting pain

Loss of coordination and balance

Bladder and bowel dysfunction

Vision problems or dizziness

Diagnosing Nerve Damage in Autoimmune Diseases

Dr. Shamis Tate emphasizes the importance of early diagnosis in managing nerve damage effectively. Some common diagnostic tests include:

Electromyography (EMG) – Measures electrical activity in muscles to detect nerve dysfunction.

Nerve Conduction Studies (NCS) – Evaluates how well electrical signals travel through nerves.

Magnetic Resonance Imaging (MRI) – Helps detect inflammation and nerve damage in the brain and spinal cord.

Blood Tests – Identify autoimmune markers and inflammation levels.

Spinal Tap (Lumbar Puncture) – Examines cerebrospinal fluid for signs of autoimmune activity.

Treatment Options for Nerve Damage from Autoimmune Diseases

While nerve damage from autoimmune diseases cannot always be reversed, several treatment options can help manage symptoms and slow disease progression.

1. Medications

Corticosteroids – Reduce inflammation and slow immune system attacks.

Immunosuppressants – Help regulate the immune response and prevent further damage.

Pain Relievers – Medications like gabapentin or pregabalin can help manage nerve pain.

Biologic Therapies – Target specific parts of the immune system to reduce inflammation.

2. Physical Therapy

Physical therapy can help improve mobility, strength, and coordination. It is particularly beneficial for patients with muscle weakness due to nerve damage.

3. Plasma Exchange (Plasmapheresis)

In severe autoimmune-related nerve damage, plasma exchange can remove harmful antibodies from the blood, reducing inflammation and slowing disease progression.

4. Lifestyle Modifications

Healthy Diet – Eating anti-inflammatory foods like fruits, vegetables, and healthy fats can support nerve health.

Exercise – Regular, low-impact exercise can improve circulation and reduce nerve pain.

Stress Management – Techniques like meditation and deep breathing can help reduce immune system overactivity.

Quit Smoking and Limit Alcohol – Both can worsen nerve damage and should be avoided.

Preventing Further Nerve Damage

While autoimmune diseases may not always be preventable, early management can reduce the risk of severe nerve damage. Dr. Shamis Tate suggests the following strategies:

Regular check-ups – Early detection of autoimmune diseases can prevent complications.

Blood sugar control – For diabetes-related neuropathy, maintaining stable blood sugar levels is crucial.

Managing inflammation – Taking prescribed medications and following an anti-inflammatory lifestyle can help.

Protecting nerves – Avoid repetitive movements or prolonged pressure on nerves to prevent additional damage.

Conclusion

Autoimmune diseases can have a serious impact on nerve health, leading to pain, weakness, and mobility issues. Understanding the connection between autoimmune conditions and nerve damage is crucial for early diagnosis and effective treatment. Dr. Shamis Tate emphasizes the importance of seeking medical attention at the first signs of nerve problems, as timely intervention can make a significant difference in managing symptoms and maintaining quality of life.

If you or a loved one are experiencing symptoms of nerve damage related to an autoimmune condition, consulting with a specialist like Dr. Shamis Tate can provide guidance on the best treatment options available. Taking proactive steps today can help protect your nerves and improve overall well-being.

[ashashash822]

Last day of IVIG infusions. Two days in a row, every three weeks, for the last 3 years. I'm tired. Recently it doesn't seem to be doing what it used to for me. Moving on to Vygart Hytrulo, a steroid recently approved for CIDP patients. I'm excited, I'm nervous, I just really hope this helps better.

[leoandraphssoulmate]

Every damn time! Especially the ER! Even tho l clearly have 2 different autoimmune conditions!!!

[springstick]

A Kinda Ramble About Health

Sorry for not posting for a few days. I have been struggling with my immune condition a lot recently. I've been getting really bad tremors in my hands, and loss of motor function, and temporary paralysis in my right hand (probably from overuse / note taking). I have a hard time writing and typing. I'm working on getting appointments set up with my doctors, but it's a week before finals and my neurologist is 2 hours away. Does anyone who has CIDP have any advice?

[redroses07]

Chronic Illness Complaint OTD:

I am SO genuinely tired of being called lazy. It’s not by those who are close to me, but people who barely even know me. The people who love and care about me know how much I struggle, but I get so angry when people who don’t even know me try to judge. I HAVE AN ILLNESS AND PHYSICAL DISABILITY. YOU KNOW NOTHING ABOUT MY LIFE.

[disabledsysboxes]

Autoimmune - 4

[coffee-n-bagels-comic-universe]

God, what a journey. I have CIDP.

On the 8th of May I was told that my official diagnosis is 'CIDP' (Chronic Inflammatory Demyelinating Polyneuropathy) I have gone from the introverted but all-out goth willing to wear that blue dress into a hospital (first pic) to (with a fresh haircut) the dying to be out of the house, sill goth, geek (last pic)

I say this not to beg for sympathy but to say I'm officially disabled and finally at a comfortable point to say that, I am weird, I am Autistic, and I'm practically wheelchair-bound.

I am a rare case, most CIDP cases aren't in their early 20s with no prior illnesses before this happens to them, but I am lucky enough to live in the UK and have free healthcare, I can complain about wait times in A&E, or the slow way hospitals communicate, but I'm writing this to say that you should look out for yourself, cause you never know what will happen.

[cidpmemoir]

Any stress at all physically hurts my body. My skin, my muscles, my brain, my heart. And if I get mad enough, sometimes if I'm lucky, I'll randomly pass out.

My life is so different from what it was.

[crinformativa-blog]

CCSS activa Centro de Información y Derivación de Pacientes para garantizar atención especializada

CR Informativa | redaccion@crinformativa.com San José, 28 de junio de 2024 – La Caja Costarricense de Seguro Social (CCSS) ha anunciado que activará el Centro de Información y Derivación de Pacientes (CIDP) este fin de semana. Esta medida busca garantizar la atención a los usuarios ante un aumento en las atenciones en los servicios de Emergencias y Urgencias de los establecimientos de salud, así…