It is an all over pain for me, starting at the top of my
body and sometimes going all the way through my toes. It hurts to hold my head up, feels like there
is a pile of concrete blocks stacked on top.
My shoulders feel like something is hanging on them, like a cement loaded back
pack. The tops of my arms feel like they
are tied up and it hurts to even lift them a tiny little bit. My legs feel like lead, or sometime like
jelly.
It’s not like I can take a Tylenol and the pain will go
away. Vicodin doesn’t take the pain
away. Not even sleep helps, not when you
feel like you are sleeping under the mattress and box spring instead of on
top. Every little thing you do drains
you of any energy you might have. Every
tiny little chore hurts. How can you
brush your teeth when you can’t life your arm to your mouth? Sitting still in a chair reading a book
hurts, like the chair is pressing on your body.
Of course it has to be a book on the computer so I can change the page
with a click of the mouse because I can’t hold a real book in my hands.
http://en.wikipedia.org/wiki/Polymyalgia
says “Polymyalgia
rheumatica (which takes
its name from the word "polymyalgia" which means "pain in many
muscles" in Greek followed by the term "rheumatica") abbreviated
as PMR, is a syndrome with pain or stiffness, usually in the neck, shoulders,
and hips. The pain can be very sudden, or can occur gradually over a period. It
may be caused by an inflammatory condition of blood vessels such as temporal
arteritis.
Most PMR sufferers wake up in the
morning with pain in their muscles; however, there have been cases in which the
patient has developed the pain during the evenings. Patients who have
polymyalgia rheumatica may also have temporal arteritis, a potentially
dangerous inflammation of blood vessels in the face.
PMR is usually treated with
courses of oral corticosteroids. Most people need to continue the
corticosteroid treatment for two to three years. PMR usually goes away on its own in a year
or two, but medications and self-care measures can improve the rate of recovery.”
I have crossed out the parts that do not apply in my case. I do not have temporal arteritis and I pray I
never do. And I have been fighting PMR
for over three years now.
Wikipedia goes on to say “The cause of PMR is not well understood. The pain and stiffness result from
the activity of inflammatory cells and proteins that are normally a part of the
body's disease-fighting immune system, and the inflammatory activity seems to
be concentrated in tissues surrounding the affected joints. During this disorder, the white blood cells in
the body attack the lining of the joints, causing inflammation. Recent studies have found that inherited
factors also play a role in the probability that an individual will develop
polymyalgia rheumatica. Several theories have included viral stimulation of the
immune system in genetically susceptible individuals.”
About treatment Wiki says “Prednisone is the drug of choice for PMR
and treatment duration is frequently greater than one year. If the patient does not experience dramatic
improvement after three days of 10–20 mg oral prednisone per day, the diagnosis
should be reconsidered.”
Note here, when I was diagnosed my family Doctor said I would feel 100%
better after I took my first dose of prednisone, 80 mg. He actually
said I would feel like dancing… well I didn’t feel like dancing but I did feel significantly
better.
“Non steroidal anti-inflammatory
drugs (NSAIDs) such as ibuprofen are ineffective in the initial treatment of
PMR, but they may be used in conjunction with the maintenance dose of
corticosteroid.”
Maintenance dose? Well in my case
that was a gradually decreasing dosage of prednisone daily for the last three
years. I went down and down and down
until January 2012 when I went off the prednisone completely…. for two whole
weeks. Then it all started all over
again, and I started taking the prednisone again. I started at 10mg for a week, then down to 7
1/2mg, then 5, 4 1/2, 4, 3 1/2 and then it all came back again, all the pain
and agony. I knew for sure I was flaring
when I slept 31 hours in a 48 hour period.
I tried going up gradually the same way I came down, but that isn’t
working. And pain meds aren’t working
either.
Wiki says “Along with
medical treatment, patients are encouraged to exercise and eat healthily. Exercise
will help strengthen the weak muscles, and help to prevent weight gain.” Someone tell me how you are supposed to exercise when
sitting still hurts like hell?
“A healthy diet will help to keep
a strong immune system, and also help build strong muscles and bones. Eat a diet of fruits, vegetables, whole
grains, and low-fat meat and dairy products. Avoid foods with high levels of
refined sugars and salt (sodium).”
Fortunately, or is that unfortunately, the prednisone helps with the eating
thing, giving you unsatisfiable cravings galore. Although sometimes the prednisone doesn’t
help at all and I have zero appetite.
I love what the Mayo Clinic says about complications:
Symptoms of polymyalgia rheumatica can
greatly affect a person's ability to perform everyday activities. The pain and
stiffness may contribute to difficulties with the following tasks:
·
Getting out of bed, standing up from a chair
or getting out of a car
·
Bathing, combing your hair or performing
other tasks related to personal hygiene
·
Getting dressed or putting on a coat (You should try putting on bra!)
These complications can affect a person's
health, social interactions, physical activity, sleep and general well-being.
And that is how I am living my life recently. I’ve been fighting this since April of 2010
and it seems like I have gotten nowhere.
I just want my life back. And I
want people to understand just because you can’t SEE my problem, doesn’t mean I
don’t have one. I am not faking it, I am
not lazy and I am not mental. I don’t
want sympathy either, I just want understand, and for this PMR to go away.
Did you know today was National Peanut Butter Cookie Day? Just that statement took me back to my
childhood to a tiny two room schoolhouse in southern NJ. Two teachers for five grades, kindergarten
through fourth, and oh so many memories.
One special memory was the school cook.
Mrs. Ware was the grandmother of one of the students, although she
probably had more grandchildren in the system and most had gone through that
school. She was the best school cook
ever and I know she would have won awards for her cooking. (IMHO that is.) 
