I am a 54 year old woman that feels like I’m living in the body of an 84 year old. Most people my age have a GP (general practitioner). I, on the other hand, have as many doctors as a geriatric patient. My specialists include a Rheumatologist, Endocrinologist, Cardiologist, Nephrologist, Ophthalmologist, Dermatologist, Gynecologist and an Orthopedist. The most important specialist is my rheumatologist. I don’t see a GP since most of my symptoms relate to lupus. Besides most of my doctors defer to the rheumatologist since lupus effects all aspects of my healing process.
I’m in pain most of the time these days. The traveling circus of inflammation has put down stakes and refuses to leave. Most of my pain is in my joints, although an overall achiness accompanies a flare. Recently, muscle pain and tightness has been added to my list of complaints. There’s headaches too, also a common symptom of lupus. And photosensitivity (sensitivity to light) goes along with that. Also, there’s generalized fatigue to compound any other symptoms. On top of all that, lupus causes damage to many different organs in the body. This disease affects the body’s organs like heart, kidneys and lungs. Pericarditis is one of my chronic conditions that lupus has caused. That’s a conversation topic for another blog.
The symptoms of lupus include:
*Joint pain and stiffness, with or without swelling
*Muscle aches, pains, or weakness
*Fever with no known cause
*Sun or light sensitivity
*Butterfly-shaped rash across the nose and cheeks
*Other skin rashes
*Purple or pale fingers or toes from cold or stress
*Sores in the mouth or nose (usually painless)
*Dry or irritated eyes
*Unusual weight loss or weight gain
*Trouble thinking, memory problems, confusion
Less common symptoms include:
*Anemia (low red blood cell count)
*Pleuresy (Chest pain when taking a deep breath)
*Pericarditis (Chest pain with palpitations and rapid heart rate)
*Nephritis (kidney inflammation)
(*denotes symptoms I have experienced or currently experiencing)
There are treatments for lupus however, there’s currently no cure for this debilitating disease. Medications are essential to my survival. I take Plaquenil (anti-malarial medication that decreases inflammation by decreasing the overactive immune antibodies that attack healthy cells). It’s supposed to keep lupus symptoms in check. Even though I’ve been taking it since I was diagnosed with lupus in 1997, it isn’t enough to prevent flares these days. My immune system is seriously confused! However as the disease process worsens, I take corticosteroids as prescribed. Prednisone helps reduce inflammation and swelling. I’m on steroids more often than not these days. They help decrease inflammation and shorten the length of flares. Prednisone causes cravings and makes me ravenous, hence weight gain. The other terrible side effects are mood swings. It’s horrible to go from ok to crying to angry for no particular reason. I hate the way steroids make me feel besides long term use can cause a myriad of health problems. I’m on prednisone more often than not as my condition progresses. Prednisone comes with a laundry list of problems. Too often I trade one set of symptoms for another. Therefore, I think of it as a blessing and a curse. Steroids decrease inflammation and give me more energy however the side effects are terrible.
A list of common side effects:
(I’ve experienced most of these at one time or another.)
Serious side effects:
-changes in emotions or moods swings, depression
-changes in vision
-decreases immune system causing increased susceptibility to infections; fever or chills, cough, sore throat
-high blood sugar -symptoms
passing urine more often
feeling sleepy or confused
-swelling of your ankles or feet
Also, I use alternative therapy including vitamins and minerals. In addition, My heating pad is used on a daily basis. When there is severe swelling I use ice too. Rest is essential to recovery. Also, a TENS unit helps distracts the muscle pain signals. Epsom salt baths helps loosen up my muscles and decrease my pain. Rest and more rest!
Day in and day out, year after year, lupus never goes away. However, I refuse to allow lupus stop me from living!
Live in the moment. Be present. Don’t let life pass you by waiting for perfection. We are all living on borrowed time 💝