What is Being Spotlighted Today - Symptoms

  

I call it a three ring circus (maybe even more rings). This means there is something going on in each ring such as knee pain, nose pain, tinnitus with one thing spotlighted. On one day the nose is hurting the most and the others are simmering, later that day the tinnitus is extremely loud, with the knees have a catch in them but not spotlighted. It runs through the body that way if you are lucky with most the things on the simmer and only one spotlighted. Hopefully not all rings are spotlighted at the same time, we call that a flare!

Definition of Symptoms by the National Institute of Health

Relapsingpolychondritis (RP) is characterized by recurrent inflammation of cartilage (the tough but flexible tissue that covers the ends of bones at a joint) and other tissues throughout the body. The features of the condition and the severity of symptoms vary significantly from person to person, but may include:

• Ear: The ears are the most commonly affected body part. Symptoms include a sudden onset of pain, swelling, and tenderness of the cartilage of one or both ears. The pinna usually loses firmness and becomes floppy; hearing impairment may also occur. Inflammation of the inner ear may also cause nausea, vomiting, dizziness, and/or ataxia. The ear can eventually deform to look 'like a boxers' ear or cauliflower ear'.

• Joint: The second most common finding is joint pain with or without arthritis.

• Eye: Affected people may experience episcleritis, uveitis and/or scleritis. Scleritis may lead to a bluish or dark discoloration of the sclera (white of the eye) and may even be associated with vision loss in severe cases.

• Nose: Nasal cartilage inflammation may lead to stuffiness, crusting, rhinorrhea, epistaxis (nose bleeds), compromised sense of smell and/or saddle nose deformity (a condition where the nose is weakened and thus "saddled" in the middle).

• Airways: Inflammation may affect the larynx, trachea (windpipe), and bronchi (tubes that branch off the trachea and carry air to the lungs). Airway involvement may lead to a cough, wheezing, hoarseness and recurrent infections. It can become life-threatening if not properly diagnosed and managed.

Less commonly, RP may affect the heart, kidneys, nervous system, gastrointestinal tract, and/or vascular (veins) system. Nonspecific symptoms such as fever, weight loss, malaise, and fatigue may also be present.

Let's get together and see what those of us diagnosed with Relapsing Polychondritis have in common. Because RP is so rare, new things about it are being found out all of the time.  

Summations from the Facebook group:

As those of use living this disease each day in and day out, we have found some commonalities among us. We find so very many symptoms that all of us share. Usually all of the above with a strong percentage with these other conditions.

• Many of us have problems with our spines, bulging discs, Degenerative disk disease, herniation, stenosis
• Tinnitus 
• Costochondritis
• Multiple urinary tract infection
• Pain across the face
• Exhaustion not associated with the drugs
• An interesting number has Trigeminal neuralgia
• Labral Tears in our hips

Giving It A Name is Half The Battle

Bingo! Rheumatologist #2

This doctor is a specialist in Autoimmune Diseases and is an associate teacher at the University Of Utah Medical School. He said he was 60% sure I had Wegener’s. I had the ANAC test result that said I had it but I was missing a few things. He kept saying that there was something that we were missing, I remained on Methotrexate. Some days were good and some weren’t. Then in December I went into my appointment on a day that wasn’t so good. I was sweating, my face really hurt, my nose and eyes were red, I was out of breath for no good reason. After talking with me for a while he decided to check my ears. That is when he saw it. My red ears. 

Can I say he was excited? He nearly did a happy dance. He brought in another doctor and asked her to feel my ears, yes, they were hot and red. He asked me why I hadn’t told him about my red ears before? Well, maybe because all things considered, that didn’t sound like it was a big deal. That is when he named it… Relapsing Polychondritis… a cousin to Wegener’s. He sat with me and went through all of my symptoms and yes, I have every one of them but one. Which one? The only one I would like and that is weight loss. Sigh….. He promptly tripled my Methotrexate. My appointment had taken a long time so he told me to go home and look up the disease. My husband wasn't in my appointment, he met me after and I had to go get some labs done so I told him the name of the disease and went to the labs. When I came back, my dear husband had a very strange look on his slightly ashen face. "Debbie, honey, this isn't good".

“God gave me my husband so we could weather the storms of life together.”

Symptoms of Relapsing Polychondritis by the National Institutes of Health

There are no tests available that are specific for relapsing polychondritis (RP). A diagnosis is, therefore, generally based on the presence of characteristic signs and symptoms. For example, people may be diagnosed as having RP if they have three or more of the following features:

• Inflammation of the cartilage of both ears
• Seronegative (negative for rheumatoid factor) polyarthritis (arthritis that involves 5 or more joints simultaneously)
• Inflammation of the cartilage of the nose
• Eye inflammation conjunctivitis, episcleritis, scleritis, uveitis
• Inflammation of the cartilage of the airway
• Vestibulardysfunction (i.e. vertigo, hearing loss, Tinnitus

Every one! I had every stinking symptom. I was excited to give this craziness a name, until we delved into it more. See Three Ring Circus-Symptoms.

Where Do We Start Looking?

We made appointments everywhere to get checked out to see what autoimmune disease I was harboring.

• Spine Clinic:  While waiting for the Gastroenterologist I visited the Spine Clinic to see if we could find out the source of my back, side and hip pain. I thought that back pain was my kidney. It wasn’t and we finally decided it was my hip and spine. We had an MRI done on both my lumbar spine and right hip. A growth was found on my L5 and I had a lumbar epidural steroid injection. This did give me some relief for my back but that hip still hurt. I also already have cervical spinal stenosis and I had an epidural steroid injection for that too.

• Physical Therapy:  After some physical therapy for bursitis in both hips my physical therapist read my CT scan from my hip and told me I had a labral tear in my right hip. First takeaway: Found the pain in my hip. Had no idea the source of the tear.

• My neurologist ordered a brain MRI to see what was causing the pain in my face. Good news, I still have a brain and no tumors. I do have Trigeminal neuralgia  

• Gastroenterologist: My ophthalmologist mentioned Crohn's disease could be the culprit among other autoimmune diseases. I visited a Gastroenterologist who set up both a colonoscopy (check for Crohn’s) and endoscopy to see why I was in so much stomach pain. No Crohns yippee! However, my stomach was covered in small holes that were bleeding. These were around 40 tiny peptic ulcers probably caused by all of the NSAIDs I had taken for the pain I was in. Tylenol just doesn’t cut it for me. He took a biopsy of my stomach. 

This great doctor took a lot of blood tests then as he was leaving our appointment, almost as an afterthought, he ordered one more test. He said it was rare and the hospital lab draw would have to pay a lot of attention to this order. It was for ANCA. Takeaway: Bingo. He found the key to getting into a Rheumotologist.

With all of these tests we have found that I'm a real gem.

Oh, My Goodness, I’m rich!

Silver in the hair

Gold in the teeth

Crystals in the kidney

Sugar in the blood

  Marbles in the knees

Iron in the arteries

Diamonds in the cataracts

-:-             

I never thought I would accumulate such wealth 

......hee hee

Going On An Adventure

My husband asked me as we arrived at Hobbiton in New Zealand. "Where are you going" and I called out "On an adventure!!" I've always loved a good mystery. Now I had a real life mystery to solve. The name of this adventure is "What autoimmune disease is it?

Gandalf: I am looking for someone to share in an adventure that I am arranging, and it’s very difficult to find anyone.
Bilbo: I should think so—in these parts! We are plain quiet folk and have no use for adventures….
Gandalf: You’ll have a tale or two to tell when you come back.
Bilbo: You can promise that I’ll come back?
Gandalf: No. And if you do, you will not be the same.
“It’s the job that’s never started that takes the longest to finish.”
-:- J.R.R. Tolkien -:-

Now to find out what was causing problems with my eyes. My eyes were my priority. The ophthalmologist said if I didn't find the underlying autoimmune disease that had attacked my eyes, it would happen again. My general practitioner is a very capable, thorough, thoughtful doctor. She ran extensive blood tests on me and couldn’t find the cause of several infections and inflammation that I had or what would cause the uveitis. She tried repeatedly to get me into a rheumatologist but to no avail. They wouldn’t take me with only the problem that had affected my eyes. So it was up to my awesome GP, my husband and myself to find out what was brewing inside of me. The prize is to save my eyesight. What do I check out first. See
Three Ring Circus-Symptoms.

“Any task in life is easier if we approach it with the one at a time attitude. ... To cite a whimsical saying; 'If you chase two rabbits, both of them will escape.' No one is adequate to do everything all at once. We have to select what is important, what is possible, and begin where we are, with what we have." 

-:- Richard L. Evans -:-

 

Time To Get Things Sorted

A series of things happened. The pain in my face continued and I took anything I could to get the pain to subside. My ears would turn red and swell. I looked like Rudolph the red nosed reindeer when my nose got red on occasion. After a little while of taking Excedrin Migraine or Ibuprofen 800 my stomach was in pain too. It would hurt if I ate and if I didn’t. I had chest pain, but I knew it wasn't my heart. My ribs hurt as if I was in a corset. The tinnitus was getting louder and my husband mentioned how loud I had the volume on things. I unconsciously did this to drown out the continual buzzing. None of this made sense to me, but I wasn’t going to let it keep me down.

 
“Keep your face to the sunshine, and you can’t see the shadows. That’s what the sunflowers do.”
-:- Helen Keller -:-

Early one day after my husband left to go golfing, I showered and while drying my hair I realized everything was cloudy in the room. Thinking I had shampoo in my eyes, I rinsed them out and still everything looked like a cloud was in my house. Looking in the mirror my eyes were extremely bloodshot, my pupils were pin dots and there was a terrible pain behind my eyes. It felt like they were going to pop out of my head. I took some ibuprofen, put a cold towel over my eyes and tried to get some rest. 

When my husband came home, we went to the optometrist. He started to check my eyes and immediately sent me to a specialist, he said I wasn’t going to lose my eyesight on his watch. In fact, he told us to get in the car and start driving to the eye clinic and he would call us with the name of which doctor to see. We met with two doctors there and I found that my pressure was 47 in one eye and 44 in the other. Your normal pressure should be 13. I had uveitis.  My ophthalmologist said that is was caused by an autoimmune disease and we needed to find out which one or this would happen again. My eyes had covered over with some type of inflammation,  that is what I was looking through. He treated me with cortisone drops and watched me closely for months. We were able to get the pressure down without having to make a tiny drainage hole in my eyes to relieve it. We now needed to find out what autoimmune disease was attacking me so it wouldn't do this to my eyes again.

-:-

Sunflowers turn according to the position of the sun. In other words, they “chase the light.” Have you ever wondered what happens on cloudy and rainy days when the sun is completely covered by clouds? They turn towards each other to share their energy.

Nature’s perfection is amazing. Now let’s apply this reflection to our lives. Many people may become low-spirited, and the most vulnerable ones, sometimes, become depressed. How about following the example of the beautiful sunflowers "Supporting and empowering each other". Nature has so much to teach us.

Home In Time To Play

Three weeks after we returned home from New Zealand my mystery illness started to hit hard. While I was still in New Zealand, I agreed to sing in a play called "Savior of the World". It was done locally and would be put on in time for the Easter season. It was going to be easy to catch up, I didn't have a speaking part, just singing in the choir as an angel. I looked forward to this fun opportunity. However, I got the flu and it wouldn't clear up. This lasted 3 months. Then my voice went and I couldn't sing without coughing. See Three Ring Circus-Symptoms.

The tinnitus was so loud in my head that I couldn't hear pitches. My eyes were getting very blurry.  Reading the music was a challenge. I eventually memorized my parts. There were times during practices that my energy level went down so far that I was happy to hold up a wall. I was grateful that I stood behind a rail so I was able to hold myself steady as we performed. My balance was going. It has been so sad to lose my ability to hear pitches. That hasn't come back. I absolutely love to sing and it is one of the things I miss most. However, I was blessed to be able to sing throughout all of the performances, because I was rejoicing in the Love I have for Jesus Christ. It truly was a blessing I didn't cough on stage.

"He who sings prays twice”
-:- St. Augustine -:-

 

The Island Of The Long White Cloud

We stopped by Hobbiton in Matamata, New Zealand on our round about way home.

Even though my body seemed to be wacky, my husband and I went on our mission to New Zealand which was indescribably fantastic and that is a whole other incredible story. Back to RP, my hip, ribs, pelvic bone and sternum really hurt at different times. The pain in my side was so strong that we went to several doctors in New Zealand to address what was wrong with my hip or back. The medical care there wasn’t what we had hoped for. Symptoms would come and go. I tried not to dwell on it and focus on our mission.


I would break out in sweats periodically, no matter what activity I was doing, then I would have the shivers like I just broke a fever. My eyes were red and I noticed in our pictures that my eyes were always squinty and I looked like I was in pain. That is totally not me. Looking back at those pictures I can tell that my face hurt that day. Several of my days were spent in bed in pain and total exhaustion. The problem was that my body had just stopped keeping up with my ambition and drive. No matter how much I willed myself that I was using mind over matter, my matter would not mind. We had a successful mission and returned home to about three semi-healthy weeks.

"No half-heartedness and no worldly fear must
turn us aside from following the light
unflinchingly.” 

-:- J. R. R. Tolkien -:-