Keeping My Thoughts To Myself

We’ve all heard that old joke, “Doctor, it hurts when I do this…”  The doctor responds, “Then don’t do that!”

We laugh, but I’d sure like to see that thought process expanded.  If a medicine is thought to cause adverse effects, why is the solution to add another medicine in hopes of controlling those adverse effects?

Off to the pharmacy I go:

Three weeks later:

Slacktivism Is Not Enough

Imagine that your doctor refers you to a specialist.  It takes months to get an appointment, but eventually the specialist gives a diagnosis:  You have a highly inflammatory disease which often leads to joint destruction, deformity and loss of function.  Chronic pain, disability and excess mortality are unfortunate sequelae.” (cf)

Stunned, you share your diagnosis with a few friends and coworkers.  Obviously misunderstanding, one shrugs, “Oh, I have that in my little finger.”  Another replies, “Just take an Aleve.”  As you struggle with your new regimen of doctor’s appointments and prescriptions medicines, people impatiently demand, “Aren’t you better yet?”

***

As someone who never changes my Facebook photo and ignores all gimmicky “post this to raise awareness…” pleas, last week I found myself in the interesting position of promoting IAAM’s FB Post Your Numbers awareness campaign.

Post Your Numbers was designed to spread the word that osteoarthritis is very different from rheumatoid arthritis – both in how it’s caused and in who is affected.

Doctor Grumpy graciously posted a public service announcement to help spread the word about our FB awareness campaign.  His readers jumped in saying that awareness isn’t enough and asked how people can really help.  They wanted facts, and they want to know what they can do.

Facts

Fact:  There are over 100 types of arthritis.  They are different.

Fact:  Of those 100+ arthritic diseases, seven of them are considered autoimmune arthritis.  The person’s immune system kicks into overdrive and instead of simply attacking foreign invaders like it is supposed to, it attacks its body’s own tissues.

Fact:  Autoimmune Arthritis is often treated with chemotherapy drugs.

Fact:  Autoimmune Arthritis isn’t limited to pain in one or two joints.  These are systemic diseases.  In addition to multiple joints, tendons and ligaments are affected.  Organs can be destroyed.  Some people lose their eyesight due to autoimmune arthritis.  Others lose their hearing.  The skin can be affected.  Lung disease can be caused by autoimmune arthritis, as can heart disease.

Fact:  Autoimmune Arthritis can strike at any age.  It is not “an old person’s disease.”

Fact:  Autoimmune Arthritis symptoms can lessen and flare without warning.  A person can feel fine in the morning, but be unable to walk a few hours later.

Fact:  A great amount of overlap exists among these diseases, and sometimes doctors have trouble telling which form a patient is afflicted with.   Patients are sometimes told, “It doesn’t matter which one of these diseases you have, because they’re treated the same way.”

Fact: There is no cure.

To Learn More:

Rheumatoid Arthritis affects multiple joints symmetrically.  Typically both sides of the body are affected:  both wrists, both hands, both ankles, both feet…  There are many links in my sidebar leading to information about RA.

Psoriatic Arthritis is very similar to rheumatoid arthritis, with the addition of the skin involvement of psoriasis.

Ankylosing Spondylitis is marked by bones of the spine fusing to one another (from the disease, not due to a surgical procedure).  As noted by one of Doctor Grumpy’s commenters, there are forms of spondylitis that don’t qualify as AS.  It is my personal opinion that diagnostic criteria will eventually change and that these diseases will eventually be diagnosed and treated soon enough that fusion can be prevented.

Systemic Lupus Erythematosis is probably the best known of these diseases.  Fifty years ago, a teenage girl diagnosed with lupus wasn’t expected to live to 20.  That is no longer true.  Great treatment strides have been made, but there is still a long way to go.

Sjögren’s Syndrome attacks the mucous membranes and moisture-secreting glands.  Dry eyes and mouth are early symptoms.  Gritty eyes feel as if they have sand in them.  People’s mouth feels so dry that it’s difficult to talk or swallow.  This sounds innocuous, but imagine what it would be like if these symptoms never went away.

Mixed Connective Tissue Disease – sometimes called undifferentiated connective tissue disease – is the diagnosis when a person has symptoms of lupus, scleroderma and polymyositis.  RA symptoms can occur, too.  Sometimes this is called “overlap syndrome.”

Adult Still’s Disease  In addition to the joint pain that comes with all autoimmune arthritic diseases, Stills is noted for high fevers and rash.  The brief post I wrote introducing Stills is here.

Juvenile Arthritis is the diagnosis when one of these diseases occurs in a child under 16 years of age.

Donate

We need a cure.  Donate to organizations that fund research looking for a cure for the different forms of autoimmune arthritis:

Spondylitis Association of America

National Psoriasis Foundation

Lupus Foundation of America

Sjögren’s Syndrome Foundation

Arthritis Foundation

Lori

Nine-year-old Lori was vomiting again.  She wasn’t ill; she was in pain.  Excruciating pain.

Three hours later her doctor listened to Lori’s story, did an exam, and sent her for x-rays.  He couldn’t figure out what was wrong.  The child returned home unsure why she felt so awful and feeling discouraged that the doctor couldn’t help.

After that day she often had similar pain, usually in her hips, but learned to take medicine before it got too bad to handle.  In the past, her family had purchased tiny ibuprofen bottles and threw away half the contents when the expiration date was reached.  Now they started buying large quantities and Lori worked her way through multiple Costco-sized bottles of ibuprofen.

Reluctant to go to the doctor again, Lori tried to hide her pain from her parents.  With the help of her siblings, she succeeded for more than a year, but eventually it was too severe to keep secret.  Back to the doctor they went.  He did another exam.  He ordered lab work.  He sent her for more x-rays.  No answers.

Her doctor recommended seeing a pediatric orthopedist, but there were no appointments available for three months.  Lori was in more pain than ever.  She’d sit with hot packs on her hips to provide a little relief, but that didn’t help enough.  Her knees hurt.  Her wrists hurt.  Her neck hurt, which caused headaches so severe that it was interfering with her schoolwork.  Obviously, the family physician thought, with so many joints involved, Lori needed a rheumatologist.

The rheum offered no answers.  By the time the calendar rolled around to the orthopedist’s appointment, Lori was fed up with being questioned and poked yet getting nowhere.  Sulking in the car before the appointment, she snapped, “We might as well just go home now.  He’s not going to be able to help.  Nobody’s ever going to figure out what’s wrong.”

He proved her right.  She was furious to be drug to another doctor’s appointment only to hear, “There’s definitely something the matter, but I’m afraid I can’t help you.”

The doctor continued to explain that he believed there was something wrong, but whatever the issue was, it wasn’t his specialty.  He was surprised, as was the family physician, that the rheumatologist hadn’t identified the problem.  Maybe she was depressed.

Of course she was depressed!  She’d been in pain for at least three years, had given up all her favorite hobbies because it hurt too much to move, and despite being drug to numerous doctor’s appointments, had no answers and no pain relief.

Lori’s information was faxed to the pediatric department of a teaching hospital for a fresh set of eyes to have a look.  A few days later, that hospital phoned to schedule an appointment for Lori with a pediatric rheumatologist.  Finally.  Answers.

Kids get arthritis, too.

Lori now takes prescription medicine every day.  Routine blood draws are needed to make sure that the medicine isn’t damaging her kidneys or liver or stomach.  She has exercises from an occupational therapist and two physical therapists.  Lori has juvenile arthritis.

***

Now, years after all this started, Lori is furious to hear people say that obesity causes arthritis, therefore she must be to blame her for her illness.  She has always been skinny – eighty pounds when her symptoms first began.  She does not have osteoarthritis (wear and tear that causes cartilage to deteriorate); she has an incurable disease caused by an immune system malfunction.

80-9-14

Today is World Arthritis Day.  Post your numbers.  Facebook.  Tweet.  Blog.  If you do not have autoimmune arthritis, I encourage you to post the numbers of a friend or relative.  If you don’t know anyone IRL, be Lori’s friend.

Help spread the word that although OSTEOarthritis can be caused by obesity, autoimmune arthritis is completely different.  There are seven diseases classified as autoimmune arthritis:  rheumatoid arthritis (RA), psoriatic arthritis (PsA), ankylosing spondylitis (AS), systemic lupus erythematosis (SLE), sjogren’s syndrome (SS), mixed/undifferentiated connective tissue diseases (MCTD/UCTD), juvenile arthritis (JA/JIA), and Still’s disease.