Explaining polymyalgia rheumatica

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.