Mixed Connective Tissue Disease

This is what I was diagnosed with in 2016 after years of pain in my knees and hips. I was 52 and when I was finally diagnosed I felt and moved like I was 90. I could absolutely not get off the couch without pushing myself up. I could not walk a mile. I could in NO way walk up a flight of stairs like a normal healthy person, I had to use the handrail and take one step at a time putting both feet up and then moving on. We lived in a three story house…it was hell.

I had gone to doctors. They told me it was nothing. They told me to lose 10 pounds. They told me to just take Advil. They told me it was normal when you get ‘older’ - I was 52 that is not that old anymore! UGH

Then finally my OBGYN listened to me and I think since she had known me so many years she knew it wasn’t normal. She knew something more was off. She recommended some tests, then more tests. then a functional medical doctor. I am grateful every day that someone finally listened to me. That one doctor out of a dozen didn’t think it was ‘normal’, it was just age, it was just me exaggerating.

It only takes ONE. Keep pushing, keep asking, keep insisting until someone listens to you.

Once I was diagnosed I was told to see a Rheumatologist, I was told to take strong medications (FOREVER), I was told it would get worse…thankfully. I said “No thanks”.

Yes, some people need these specialists, some people need the medications. But I wanted to at least TRY a different path. I wanted to try something less intense. I made the decision when I read that “most people with MCTD lived 10 years after diagnosis” MOST??? what does that mean? Further research said 80%.

I’m an optimist.

I believe we should live to 100…and I plan to.

I believe we can heal.

I believe what we eat matters and none of these huge institutions (Mayo clinic, Cleveland Clinic, Cedar Sinai, etc) were saying anything about food. Why?

So I got off of those websites and did my own research.

MCTD is similar to lupus and rheumatoid arthritis. It can also present as skin rash issues like with psoriasis. The joints become inflamed and this causes debilitating pain. Often it is in the hands, but mine was in my hips and knees.

What is it?

MCTD is a rare autoimmune disease which can be diagnosed with consultation and a blood test which tests for a rare antibody anti-U1-ribonucleoprotein.

MCTD is a mix of 4 different autoimmune diseases (yay!) But most people seem to have symptoms similar to lupus or rheumatoid arthritis and/or scleroderma or polymyositis

What causes it?

The typical things that cause most all autoimmune diseases:

• poor functioning immune system

• intestinal permeability “leaky gut”

• genetic factors (especially a family history of connective tissue issues)

• certain viruses and bacterial infections, like strep throat

• exposure to polyvinyl chloride or silica

Who gets it?

As with other autoimmune diseases it is usually seen in women and for MCTD mostly women between 20-50 years of age.

What are the symptoms?

• serious joint pain (in two or more joints is typical)

• swollen fingers

• lung disorders

• difficulty swallowing

• loss of sensation in face, head, or hands

• can have lung, heart, or kidney problems

• fatigue

• muscle pain

• intense arthritis

• hearing loss

• high blood pressure

• myelitis (inflammation of the spinal cord)

• fevers

• Raynaud’s phenomenon

What makes it worse?

• stress is a huge factor of onset and flares

• pregnancy

• cold temperatures

• consuming an inflammatory diet

• consuming too much sugar

Possible Complications

• high blood pressure

• heart disease

• hearing loss

• nerve damage

• lung disease

• kidney disease

• colon issues

• anemia

What can you do to manage symptoms?

Incorporate stress reduction into your daily routine, even 10 minutes

Move daily in a light to moderate way - walking, yoga, swimming, easy bike rides or dancing

Don't consume wheat, sugar, fried foods, dairy (unless it is raw or grass fed) - these are all inflammatory

Try the Autoimmune Protocol for 60-90 days

Physical therapy

Consume enough water (2-3 liters a day) with added minerals and sea salt

Eat smaller more frequent meals, and make sure to eat 1 gr of protein per pound daily

Avoid alcohol

Avoid extreme temperatures

Get adequate sleep

Be realistic about what you can do and be honest with those around you about what you need