Living with LUPUS ~ One Day at a Time

~A couple of years ago I began having symptoms of extreme fatigue and a bad case of the BLAH's.  I would wake up each morning experiencing flu-like symptoms---aches, pains, headaches, etc., but it never really developed beyond the early 'warnings' that sickness was evident.

After weeks and months of experiencing these symptoms I decided that I should probably see my doctor and ask for a thyroid test as I was wondering if it may be related?

I wasn't concerned so much about the aches and pains as I'd been living with that for many years and chalked it up to residual effects from a bad fall I had taken on ice several years ago.  I had a slight fracture in my pelvis, broke 4 inches of my tailbone right off, and had crunched my spine like an accordion.  I'd been to the ER, did my 6 week stint of laying as motionless as possible on the living room floor, and followed up with chiropractic care and physio therapy for a few years.  Nothing seemed to help it, so I decided to just accept it and go on.

At the doctor's appointment I decided to only reveal the flu-like symptoms and didn't mention the severe joint pain which is worst in my spine, neck, hips, shoulders, and knees.  I was afraid the doc would prescribe more physiotherapy and weight-lifting exercises which often just made my pains worse.

We discussed some tests for thyroid issues and she wrote out a requisition for blood testing.  Right before I left I enquired about some other treatment options for my psoriasis besides the steroid lotion I have been using for about 16 yrs.

She mentioned Enbrel and told me to go home and check it out online.  Once at their website I saw a link for the National Psoriasis Foundation.  As I read the page I found out that joint pain along with the skin lesions,  is indicative of Psoriatic Arthritis.  I had many of the symptoms, including the nail pitting and joint inflammation, so I made a phone call the next day and confessed my other ailments.  She ordered further blood tests which led to me being referred to see a Rhumatologist.

And so the fun began.  Yes, you do sense some sarcasm here!

More and more blood tests.  Poking and prodding......x-rays and bone scans.....meds and more meds.

I am currently being treated for:

Fibromyalgia - "Fibromyalgia is a common syndrome in which people experience long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues.

Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, anxiety, and other symptoms.  

The primary symptom of fibromyalgia is pain.

• The exact locations of the pain are called tender points. Tender points are found in the soft tissue on the back of the neck, shoulders, sternum, lower back, hips, shins, elbows, and knees. The pain then spreads out from these areas.
• The pain is described as deep-aching, radiating, gnawing, shooting or burning, and ranges from mild to severe.
• The joints are not affected, although the pain may feel like it is coming from the joints.
• People with fibromyalgia tend to wake up with body aches and stiffness. For some patients, pain improves during the day and increases again during the evening, though many patients have day-long, non-stop pain.
• Pain can increase with activity, cold or damp weather, anxiety, and stress.

Fatigue and problems with sleep are seen in almost all patients with fibromyalgia. Many complain that they can't get to sleep or stay asleep, and they feel tired when they wake up.

Other symptoms may include:

• Irritable bowel syndrome with gas, and alternating diarrhea and constipation
• Memory difficulties and problems thinking clearly
• Numbness and tingling in hands and feet
• Palpitations
• Reduced exercise tolerance
• Sad or depressed mood
• Tension or migraine headaches"

Psoriatic Arthritis - "The arthritis may be mild and involve only a few joints, particularly those at the end of the fingers or toes. In some people the disease may be severe and affect many joints, including the spine. When the spine is affected, the symptoms are stiffness, burning, and pain, most often in the lower spine and sacrum.

     People who also have arthritis usually have the skin and nail changes of psoriasis. Often, the skin gets worse at the same time as the arthritis."

    

Ankylosing Spondylitis - "Ankylosing spondylitis is a long-term disease that causes inflammation of the joints between the spinal bones, and the joints between the spine and pelvis. It eventually causes the affected spinal bones to join together.  

The disease starts with low back pain that comes and goes.

• Pain and stiffness are worse at night, in the morning, or when you are not active. It may wake you from your sleep.
• The pain typically gets better with activity or exercise.
• Back pain may begin in the sacroiliac joints (between the pelvis and the spine). Over time, it may involve all or part of the spine.

You may lose motion or mobility in the lower spine. You may not be able to fully expand your chest because the joints between the ribs are involved.

Fatigue is also a common symptom. "

and Systemic Lupus Erythematosus - "Systemic lupus erythematosus (SLE) is a chronic autoimmune disorder. SLE may affect the skin, joints, kidneys, and other organs.  

SLE (lupus) is an autoimmune disease. This means there is a problem with the body's normal immune system response.

Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system cannot tell the difference between harmful substances and healthy ones. The result is an overactive immune response that attacks otherwise healthy cells and tissue. This leads to long-term (chronic) inflammation.

The underlying cause of autoimmune diseases is not fully known.

SLE may be mild or severe enough to cause death."

~Methotrexate is a chemo-therapy drug, which is used to suppress my immune system to prevent it from attacking healthy cells causing serious health issues, and tissue/joint damage.

~Once a week I inject myself in the abdomen with this cyto-toxic chemotherapy drug.

~These oral meds are ingested daily to assist with my physical well-being.  The injections are done once per week.  Tomorrow I will be adding Cymbalta to this daily treatment in hopes it will assist with pain relief.

I've been experiencing shortness of breath and lung pain which can be a sign of problems with lupus.  My chest x-rays came back normal, but I'll be having a Lung Function Test tomorrow to see what's going on.

I have a requisition to have a Bone Density Scan performed to see if I may have osteoporosis as I've had many broken bones all over my body.  Tests have also revealed a Vitamin D deficiency in my system, so I must take 3,000mg daily to assist with my body's ability to absorb Calcium and strengthen my bones and prevent further bone loss.

I've tried less invasive treatments but my body didn't respond well to Voltaren or to the Plaquenil.  After 16 weeks on the plaquenil, I developed intense itching which felt like I had fire-ants eating their way out of me from the inside of my body.  It was horrible!  It turns out I am allergic to it and it was affecting my liver, which caused the toxins to build up in my blood system, creating this intense itching which nearly drove me mad.  All I could do is slap the surface of my skin to alleviate some of the symptoms.

Last summer I broke out in a painful, itchy rash and tiny fluid-filled blisters which could be a symptom of a Lupus flare, or it could be related to a sun-sensitivity from the METHOTREXATE INJECTIONS.  This has changed the way I can enjoy the outdoors in the summer months and has put a serious halt on the amount of gardening that I can do.  I will be having some regular blood testing to see if the lupus factor in my blood is increasing, and make sure that my liver and other organs are functioning properly and effectively.

Last week I began taking LEFLUNOMIDE tablets as well, 10mg daily.  It is also an immuno-suppressant medication to treat the lupus and psoriatic arthritis symptoms and help to control the flares.

I don't allow my mind to stress over this diagnosis.  Worrying doesn't fix anything and the stress can just add to the problems.  I prefer to just remain as positive as possible and make the most of each day.  Treatment is available and at this point I am open to exploring all viable options.  I have to admit that up until quite recently I have been in denial and didn't want to inform myself with all of the necessary details.

If you are experiencing any of these symptoms, please don't hesitate to see a physician and have some testing performed.  An early diagnosis is best.  I have suffered for at least a dozen years with all of these symptoms before being diagnosed.  Check out the various links that I have embedded throughout this post and see a Rhumatologist for all of your joint and tissue pains.  

Don't delay.  Be safe and healthy.