Rheumatiod Arthritis

Today I'm going to deal with RA as it is what hurts me today.  For anyone who does not know, RA is a chronic, inflammatory, autoimmune disorder that causes the immune system to attack the joints.  It is disabling and painful and can lead to substantial loss of mobility due to pain and joint destruction.  This is not to be confused with osteoarthritis which is wear and tear of the joints, or degenerative osteoarthritis which wears down the very bone but does not affect the other organs of the body.

RA is a systemic disease which often affects tissues throughout the body including the skin, blood vessels, heart, lungs and muscles.  It affects many joints but is most known for the damage to the hands.  In it's later stages, nodules form over the bony prominences in the hands and will curve the fingers (most often) towards the pinkies.  However, medications now available profess to not only halt the disease but to repair damage as well.  I'll keep you posted on that last.

So, basically, it hurts to write, type, do up my buttons, tie my shoes, zip my pants, cook anything that requires that I lift the pan or clean the pan, open a jar, reach above my head to bring something down, blow dry my hair, and drive.  We use our hands for SO many things that we do not think about how vulnerable we become when our hands fail us.  So now I prebutton my shirts, wear slip on shoes, buy take-out more often than I can really afford and have someone come in to clean.  Jars and my hair...well...I'm on my own.  All of my medications lack a child-proof cap because I cannot open them when my hands hurt.  I can, however, open a cap with my teeth if I must, so at least I can get to the meds.

As to that - there are a few medications out there for RA.  The first one all insurance companies will make you try is methotrexate.   Methotrexate is what is known as a DMARD or a Disease Modifying Antirheumatic Drug.  DMARDs halt disease progression and have been known to produce durable remissions.  However, this particular medication gave me migraines, so I did not take it for long.  Taking DMARDs early helps prevent structural joint damage, and it is the first thing you will receive from any rheumatologist.  The next step, which, as I said, I reached rather quickly, is a drug called Enbrel.  Enbrel is a biologic agent known as a tumor necrosis factor alpha blocker.  In fact, Humira, Enbrel and Remicade are all TNF blockers but they have different bases.  Enbrel has a manufactured base, Humira has a human base, and Remicade (I believe) is both mouse and human based.  I took Enbrel for the last year and it worked well enough.  The problem is that it costs $400 IF YOU HAVE INSURANCE!  It costs $1200 without insurance.  The only factor that mitigates this highway robbery is the fact that the manufacturers have a program called "co-pay assist" and they'll help you out with most of it.  My co-pay for the last year has been $75 a month while injecting Enbrel once a week.

My Rheumatologist has decided it is not as effective as she would like, so I was switched to Humira, which comes in an injection pen (as opposed to a syringe like Enbrel).  Little did I know how much this was going to hurt!  Not a fun experience.  I will say that, for me, it is more effective than Enbrel.  I think I'm actually going to sleep tonight.

In terms of dealing with the pain, the first rule is to stay warm.  Really.  Stay REALLY warm.  It helps keep the inflammation down in the joints and, consequently, helps with the pain.  My truest friend knitted a pair of Fagen gloves for me so I could drive my daughter to school every day and it really helped.  If you are in dire straits, take a bath as hot as you can stand it and stay in for 20 minutes.  This might seem counter-intuitive since swelling calls for ice in most instances, but trust me, you NEVER want to put ice on RA pain and a bath will help.  Do not waste your money on arthritis creams...they're for the osteo and will not do you a bit of good.  You can, however, get heat wraps for your hands at most drug stores, and they last up to twelve hours.  Sleeping will be a problem because by the end of the day it all hurts worse - hands, elbows, shoulders, neck, back, hips...all of it.  I have not yet found a way to make this better other than sheer exhaustion.  Opioids don't really help and anti-inflammatories help only a little.  The best thing you can do is learn to meditate and try to find a happy place.

So, that's it for tonight...my hands are starting to hurt!  :-)

living with chronic pain

So, I have been told by all and sundry that I should start sharing the volumes of information I have gathered on chronic pain as I suffer from (or have been cursed by, or challenged by or even gifted with) six separate diagnoses which cause pain in some form or another.  I am also one of those who must research all I can about each condition and talk it to death with the few friends who will still listen to me, so possibly this is their attempt to stop the endless phone calls.

I have (in no particular order) bipolar disorder, chronic fatigue syndrome, degenerative osteoarthritis, rheumatoid arthritis, fibromyalgia and spinal stenosis.  I take as well as inject medicines and supplements for these but they only nominally work.  I would like to share what I know about dealing with chronic pain and doctors and medication and insurance companies, but I'm not sure where to start.  I guess the best place to begin is with tricks that may help.

First, let me define chronic pain for anyone who is interested.  Chronic pain was originally defined as pain that lasted six months or longer.  It has been redefined recently as pain that persists longer than the temporal course of natural healing associated with a particular injury or disease process.  Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.  And yes, I know I should have sourced those but I don't remember from whence I pulled them.

Pain is subjective in nature and defined by the person experiencing it, and the medical community is just beginning to understand that chronic pain now includes the part the mind plays in processing and interpreting pain signals.  This last is probably the most important thing you must know if you are in chronic pain facing your doctors or if you know someone who is in chronic pain.  It would feel very different if it were your pain and my doctor is sure he/she would feel it far less.

There are things you can do depending on the location, severity and duration of the pain.  Anyone who has to endure hours of truly debilitating pain would benefit from labor and birthing techniques (and yes, they work for men as well), whereas anyone who has to live through hours of the same pain over and over, whether it is dull or severe must either learn to create an "off" switch or learn to become one with the pain.  I know this sounds like something from "Kung Fu" but it is, alas, true and besides, it works if you can master it.  There are other things you can do as well, but I want to know who's listening before I start to rattle of my vast encyclopedia of knowledge.  So I think this will do it for my first post.