The truth about living with Rheumatoid Arthritis

Autoimmune Disease

Rheumatoid arthritis and the voice (cricoarytenoid arthritis)

I love to sing.  It is one of the ways that I relieve the stress…I grab my ipod, plug it into the stereo and turn it up loud.  Right now it’s usually Pink, or something way daggier, like some 80s favourites…and I sing along to my heart’s content.  It’s an emotional release, it lets off steam, it makes me feel happy!

In my younger years I was a singer in a band.  It was the thing I loved above all else…in my pre-children days.  Singing was the one thing that I was actually better at than most people.  A natural talent.

An interesting thing I learned when I visited the Pain Clinic is that the cause of my hoarse voice is very likely Rheumatoid Arthritis.  The doctor asked me about my hoarseness, and explained this was most likely rheumatoid arthritis affecting my cricoarytenoid joint.

Rheumatoid arthritis can affect the voice?  Apparently so.

A quick google turned up a few interesting articles.  It’s called cricoarytenoid arthritis.  There’s a post on rheumatoid Arthritis Warrior about it. http://rawarrior.com/cricoarytenoid-arthritis-in-rheumatoid-arthritis-part-1/

And what is exactly is the Cricoarytenoid Joint?  The cricoarytenoid joints are located between the cricoid and arytenoid cartilages in the back wall of the larynx. The cricoarytenoid joints help open, close, and tighten the vocal cords during speech and breathing.

Turns out that around 35% of people who suffer from Rheumatoid Arthritis suffer from hoarseness, which is the most common symptom of cricoarytenoid involvement.

The full list of symptoms includes:

  • Hoarseness
  • Difficulty swallowing, and/or pain when swallowing
  • The feeling of having something stuck in your throat
  • Pain when talking
  • Intermittent or complete loss of voice
  • Shortness of breath
  • Feeling like you are choking.

 

Most frightening is the sensation that you are choking, and can’t breathe properly.  It’s a horrible feeling, and I’ve had it for years.  I just never realised that it is also one of the joys of Rheumatoid Arthritis.

I discussed it with my new Rheumy and she suggested a Barium swallow. Oh joy!  Another pleasant sounding procedure.  Happy Christmas!  She felt the choking sensation was likely due to arthritis, but she thinks it’s best to be sure.  I agree.  I guess.

I never mentioned it before, because I always had bigger things to worry about.  I never even thought about it that much.  An attack would happen, and then by the time I saw my doctor, I had forgotten about it.

It pales in comparison to not being able to walk.

At any rate, there is no extra treatment required, unless it is very severe.  In that instance, steroids can be injected directly into the cricoarytenoid  joint.

It sounds like a very unimportant symptom, or rather, complication of Rheumatoid Arthritis.  It sounds like it wouldn’t make a big difference to your life at all.

Except maybe if you are a singer.

What does a Rheumatoid Arthritis flare feel like?

what does a rheumatoid arthritis flare feel like

The thing to understand about inflammatory arthritis pain is that it’s always there.  It’s not like muscle pain that happens when you use the muscle, or a broken bone that hurts when you use the limb.  Arthritis pain is constant.  There’s no comfy position to get into so that it doesn’t hurt.

I have pain every day.  Sometimes it’s mild, sometimes not so much.  No matter what, I try to put a smile on my face and deal with it.  Why?  Because there isn’t really a choice.

To some people, I would be in a permanent flare.  I don’t really look at it that way.  I think most people with RA have a baseline level of pain.  For some, this is pain free.  For some, this is mild, occasional aches.  For some, this is daily aches and pains, from mild to moderate to severe.

Severe pain all day every day is what I would call perma-flare, and there are people who are forced to go through life this way.

My baseline is mild to moderate daily pain in various joints.  Usually not all at once, and the worst affected joints move around.  Some days it’s my hands and feet, some days it’s my neck and hips, some days my lower back.

Today it’s my ribs and my jaw that are giving me the most trouble.

Yesterday it was my hands and feet – ‘classic’ rheumatoid arthritis symptoms.  Tomorrow, who knows?

And then there are flares.  Full body mega flares I call them.

So what does a rheumatoid arthritis flare feel like?

Rheumatoid Arthritis guy put it like this:

Imagine having all your joints slowly pulled apart. Now, imagine not having to imagine it. This is rheumatoid arthritis. —RA Guy

I think that sounds pretty accurate.

Flares hurt a lot.

For me there is dull but strong pain in my wrists and ankles.  My lower back feels like someone is twisting a knife in it.  My knees ache, and then suddenly feel like someone has stabbed a screwdriver into them.  My ribs squeeze my lungs, so that it’s hard to breathe.  It feels like maybe I’m having a heart attack, or someone is crushing my chest.  There is no way to sit, no way to lie down, there is no position that eases the rib pain.  There is no way I can wear a bra!

Knowing that it is my ribs (costochondritis) helps with the anxiety.  I know I’m NOT having a heart attack, no matter how bad if feels.  It’s just pain.  Empty, pointless pain.

My jaw is throbs (TMJ disorder). It feels like the worst earache ever.  But my ears have been checked…there is no infection.  It’s referred pain from the jaw.  I have a constant headache radiating up from my jaw.  Opening my mouth hurts.  Closing again it hurts.  Chewing is not an option.  Not that I have an appetite anyway.  People tell me I slur my words…that’s because I am trying to move my jaw as little as possible.  Smiling hurts.  I try to smile anyway.  I may as well.

Sometimes out of the blue my big toes will just explode.  Big toe…hahahaha…how bad can that be?  Yeah, pretty bad!  It is searing pain that will stop you dead in your tracks.  Not so funny.  Your big toe helps with your balance and takes about 40% of the weight of all the toes.  It’s pretty important.  When it’s flaring, if it doesn’t make you scream aloud, it sure makes you walk funny.

And now onto my hips.  Again, there is no way to lie, no way to sit…hips, lower back, it all merges together.  The tendons also become inflamed (enthesitis), so moving hurts more.

My shoulders ache…it feels like there are lead weights on them.  Some days I can’t raise my arm very high.  Some days I can, but its excruciating.  Some days it just hurts a bit.  Because my shoulders are inflamed, out of alignment…something…the muscles all down my back spasm.  Massage helps temporarily.  Some days it hurts too much to be touched.

Then there are my eyes.  I often wake up with red, raw, dry, painful eyes.  Sometimes I have to sit in a darkened room until it subsides.  This is most probably iritis (anterior uveitis).

Inflammatory arthritis pain is constant.  It doesn’t quit.  It wears you down.  I think the constant pain is the cause most of the fatigue I experience…most of my brain is trying to block out severe pain and keep functioning. That’s exhausting.

So what can be done?  Prednisone burst.  Heat packs.  Topical creams and gels.  Hot showers. Extra nsaids, analgesics.  Rest.

A true full body mega flare?  Nothing, really, can be done.  Nothing touches it.  You just have to hope it doesn’t last long.  Mine are improving.  Lately they only last 24 hours or so.  Recently they were lasting 4 days or so.  The longest one lasted 4 months.  This is child’s play to what I’ve read some people experience.  Some people are in full body mega flare all the time.

I don’t know how they cope.  They have to, I guess.  Because there isn’t really a choice.

 

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DMARD choices – Management of Rheumatoid Arthritis

There are many medications prescribed for Rheumatoid Arthritis.  No two cases are exactly the same, and the treatment approach will depend on the severity of symptoms.  Most people will need to try several different medications, or combinations of medications to find a cocktail that works best for them.

The most important class of medications in the treatment of Rheumatoid arthritis are DMARDs (Disease Modifying Anti-Rheumatics) and bDMARDs (Biological Disease Modifying Anti-Rheumatics).  bDMARDs are very expensive medications, and in Australia there is a strict criteria and you will need to try and fail several DMARDs before being allowed to try bDMARDs The chart below is taken from the Australian Prescriber website, and lays out the criteria that your rheumatologist will use to choose the appropriate medication.

Management of Rheumatoid Arthritis – Criteria for selecting a DMARD

 

Management of Rheumatoid Arthritis

 

Who gets Rheumatoid Arthritis? RA Risk Factors

Rheumatoid Arthritis is an autoimmune disease that causes chronic inflammation of the joints, tendons and ligaments and other organs of the body.  It affects approximately one percent of the population, to varying degrees.  Some people have only mild disease that is easily controlled with simple medications but many people suffer severe pain, fatigue and disability.

The disease affects 3 – 4 times more women than men.  The reasons for this are unclear, but it does implicate hormonal factors, or genetic factors.

Age is also a factor.  Most people develop the disease between the ages of 35 and 50, although it can appear at any age.  Even children can get rheumatoid arthritis, however it is referred to as JRA or Juvenile Rheumatoid Arthritis.  Many children with JRA go on to develop adult RA.

Sometimes RA runs in families, but often there is no family history of autoimmune disease.  Heavy, long term, smoking has been shown to increase the risk of developing Rheumatoid Arthritis.  Environmental factors also play a role, but no one is certain about which combination of factors (environmental, genetic, lifestyle) put together will cause RA in any particular patient.

If you think you may have Rheumatoid Arthritis, you need to be referred to a Rheumatologist for diagnosis and treatment.  Early diagnosis is key to preventing long term disability.

What is Rheumatoid Arthritis?

If you are on this website, you either have Rheumatoid Arthritis, think you may have Rheumatoid Arthritis, or someone close to you does.  So lets cover the basics.

Rheumatoid arthritis (RA) is an autoimmune disease that causes chronic inflammation of the joints.  It usually affects the small joints (hands and feet) but any joint in the body can be affected.  The disease is usually symmetrical, (that is, if your right wrist is inflamed, your left wrist will be also) but this is not always the case.  Joints may appear red, hot and swollen, or they may be no visible signs at all.  Rheumatoid arthritis affects the synovium, or the fluid lining the joints.  This fluid becomes inflamed, and can cause severe pain.  The tissue surrounding the joints can also become inflamed, including the tendons, ligaments and muscles.

The severity of Rheumatoid Arthritis varies considerably.  Some people have mild disease, experiencing pain in their hands and feet from time to time.  This tends to be the public perception of RA.  This perception is very wrong, however, when it comes to people with moderate to severe disease.

For those with moderate to severe disease, the disease is devastating.  While inflammation of the tissue around the joints is characteristic of rheumatoid arthritis, the disease can also cause inflammation and injury in other organs in the body.  The heart, kidneys, the lungs, the eyes…all of these can become inflamed and damaged from the effects of RA.  Because it affects multiple organs, RA is referred to as a systemic illness, and is sometimes called Rheumatoid Disease.

People with severe disease often suffer irreversible damage to their joints, although studies have shown that the level of pain and stiffness a patient experiences doesn’t necessarily correlate to the amount of  damage visible on scans.  So a patient may have little damage, but intense pain.  Or a lot of damage, and not very much pain.

Pain is generally the limiting feature, and many people with moderate to severe RA are unable to work within five years of onset.  People with RA also experience severe fatigue, particularly during disease flares.  Some people are in a permanent state of flare, meaning that they are always in pain.

Around 30% of people do not respond to current treatments and must learn to live with crippling pain.

RA is a chronic disease, and there is no cure.  The condition can be managed to varying degrees with medication and lifestyle changes, but only the mildest cases continue to have a ‘normal’ life. People with moderate to severe RA experience considerable pain and disability, often made worse by the fact that the disease is often completely invisible.  And because many people claim to have arthritis, or call any ache or pain in their body ‘arthritis’ the disease is often not taken seriously.

Without a rheumatologists diagnosis (read the diagnostic criteria here), it is extremely ignorant and insensitive to claim to have rheumatoid arthritis, when so many people’s lives are completely altered and devastated by what is a very serious and painful disease.

Some people have periods of remission, where they are symptom free.  This is the aim of RA treatments, but many people never achieve this.  The public perception is that taking an advil or nurofen is all that’s necessary to relieve the pain, when in fact most people with active RA take low dose chemotherapy and biological drugs that have severe side effects, and only a moderate  success rate.

About 1 in a 100 people are affected by Rheumatoid Arthritis.  Women are two to three times more likely to get RA, and it affects all races equally.  It can begin at any age, even children suffer.  It most commonly hits around 35-55 years of age.  In some families, many members are affected, suggesting a genetic component to the disease, however others develop RA ‘out of the blue’ with no family history.

If you think you may have Rheumatoid Arthritis, the first step is to see your primary care physician, or general practioner and get a referal to a Rheumatologist.  Early diagnosis is key to preventing damage and provides the best treatment outcomes.