Lupus Pain – My Story

Lupus is an autoimmune disease, no known cause, therefore there’s no cure.  Lupus is usually diagnosed in women in their child-bearing years but includes children, men and, older women. 

This is just my story

Lupus affects patients differently in organ involvement and severity.  There are different forms, most common is Systemic Lupus Erythematosus or SLE.   Lupus may affect you differently. 

Emotional Pain from Lupus is different from the physical pain.  I miss the things I used to do. Just being spontaneous and going out in the sun.   I miss the life I used to have.   I can’t just go out to a festival event and stand out in the sun.  We plan around the sun and go early evening when the UV index is lower. 

The humidity is a big factor for me.  The combination of the heat and humidity can really increase my fatigue and produce a flare.   A flare is an increase in symptoms, such as pain or inflammation.

The physical pain I have is constant, sometimes it increases and bothersome.  I’ve grown used to the pain and learned to cope with it. My pain is in both hands and wrists, my feet and my knees are the most severe.  The inflammation and swelling can get really severe.

I’ve had flares all my life, now that I know the signs.  The major flare, that led me to my diagnosis occurred after I got married.  We went on a cruise to the Caribbean and my fiancé suggested I go the tanning beds so that I didn’t get burnt on the cruise.  So I started tanning a few times a week.  The heat felt good and did have a nice tan.

Photo by Joe Pizzio Unsplash

The cruise was amazing, the first day at sea we spent on the deck lounging and in the pool.   After we went back to our cabin, I was extremely exhausted and just didn’t know what the matter with me was.  I took a nap for three hours, which just is not like me. 

After our cruise, we started our lives together and everything was fine the first year.  I worked in a warehouse, and the following summer was extremely miserable.  The heat was unbearable, and we were taking breaks every hour to get out of the heat and they even brought us frozen treats to help.   I experienced trouble with my right foot.   My doctor ordered an MRI and sent me to a specialist.  He also ordered an ANA test.  The ANA test came back positive, and I had a referral to a Rheumatologist.  I googled positive ANA and possible results were Rheumatoid Arthritis and Lupus.  I determined I was NOT going to have that. 

After my first visit, my doctor said my symptoms were RA, but he ordered another series of tests and scheduled my next visit in three months.   Three months later, he said my symptoms are RA, but my blood work shows Lupus.    I left with a prescription for hydroxychloroquine to return back in 3 months.

Uncertain Diagnosis

“About half of patients followed in a lupus clinic also have symptoms of rheumatoid arthritis, scleroderma, or dermatomyositis, a circumstance that doctors call “overlap disease.” The combination of rheumatoid arthritis and lupus overlap is so common that it has an unofficial name, not listed in textbooks: “rhupus.” Another overlapping illness is called (also unofficially) mixed connective tissue disease (MCTD). Patients with MCTD have symptoms of lupus, scleroderma, and dermatomyositis all together and a particular, unusual autoantibody.” 

So my Lupus journey began, and I learned all that I could about Lupus and checked out several titles from the library.     I read everything that I could and educated myself. 

It’s important to have an eye exam before you begin this medication, or as soon as you can.  I didn’t know this when I first started taking it.    I took 200 mg twice daily for over a year.  My symptoms improved and I was in remission and stopped taking it after a year.

I joined an online support group and learned from other patients.  We shared heartaches and victories, and every summer answered questions for the newly diagnosed.  June is the month that we saw more new members join. 

The side effects of medication are difficult and often embarrassing.  I was so harassed at work I signed up for intermittent FMLA to take the time off when I needed to.  This also protected me to make it to my many doctor’s appointments.   I was wearing a boot to heal my foot, which was open-toed.  We found a cover to go over so I could wear it at work.    My foot improved, and back to wearing street shoes.

Later, I heard a SNAP and then felt additional pain.  I remember struggling to make it up a flight of stairs.  Back to my foot doctor and I learned my tibial tendon snapped.   Next was surgery, worst of my life.

Now I had an overlapping disease, mixed connective tissue disease and, Raynaud’s.  It’s common if you have an autoimmune disease, to have two or more as well.  Yay me! 

If you’d like to share your story and be a guest blogger leave your comments below.

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