What I've Learned So Far

 

Let’s peddle ahead 8 months. This disease is a mean one. It destroys all the cartilage in the body along with the collegian. It is also partial to eyes. Relapsing Polychondritis or RP evilly says,  “Let’s make her blind while we cut her off at the knees”. There is cartilage EVERYWHERE in your body.

As we go through my past, we can see where RP has hit. In 2010, I had my left foot fused because the cartilage was gone and my ankle was bone on bone. Now I have had both knees affected, both hips with a tear in the cartilage in my right hip.  

Take-away: This disease will not keep me from playing on the floor with grandchicklets. I’ve learned to get up off the floor, roll over onto all fours and push with my arms on a piece of furniture until I can stand up. This works for tubs too!!! (skip the furniture and use the side of the tub)

I have had shots in both knees, it has helped me for about 4 months, but I need to have them checked out again. This was by an orthopedic surgeon.

I have Trigeminal neuralgia which was diagnosed in 2011. It seems there is an inordinate amount of people with that and RP at the same time. Could this just be a coincidence, or is it related to RP? The migraines from Trigeminal neuralgia are called the “suicide headache” because it is extremely hard to get away from the pain.  I have found them to be diminished since I’ve been on Methotrexate. Several have this condition in our Facebook RP group. Take-away:  When I do get these migraines,  Maxalt helps better than anything else. See Medicines.

It has attacked both ears. When I am in a flare my ears go red and hot. It only goes red where there is cartilage. The lobe at the bottom of the ear doesn't go red because it isn't made of cartilage. My right ear is the worst and is starting to cauliflower over.

Take-away:  my glasses slide off easier as these ears break down, also the medical masks slide off so I double the loop around my ear to help stable them.

The tinnitus is still really loud. If everything in the room is ultra-quiet, the tinnitus is all the more extreme. See Three Ring Circus-Symptoms. Take-away: I seem to sleep better when there is noise in the room, then my brain focuses on that and the noise in my ears calms down. Might I suggest binge-watching Diagnosis Murder? Works for me. I’ve slept through many episodes, I need to binge watch again.

My nose keeps turning red and really aches. It could lose it's cartilage and it could saddle.  Take-away:  I’ve been looking at movie star pictures to see which one I would like when my nose decides to saddle. It takes forever to heal from a tiny cut, how would plastic surgery be? Any suggestions for a cute nose?

"When life gives you lemons make lemon chicken

and lemon pound cake.  Shake things up a bit."

-:-

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