The truth about living with Rheumatoid Arthritis

#rheumatoid arthrits

Things Rheumatoid Arthritis has taught me

RA has been a teacher.  Not my favourite way to learn, I’ll admit.  But I have learned a lot.

I, like many it seems, used to be a Type A, in charge, 25 hours in a day kind of person.  I had a good career, two children, one of whom is on the Austism Spectrum.  And I thought I was a pretty good wife.  I cooked and cleaned and generally took care of stuff.  I helped out at the school, I had time to listen to my friends troubles, and I was happy to help.

And then Rheumatoid Arthritis hit me like a freight train, and left me as a little puddle of goo on the ground.  The kind of thing people step in, and wince with disgust and scrape off their shoe.

Lots of people treated me that way…with disgust.  Disdain.  Disbelief.

They thought I was making up the degree of pain I was in.  The severity of the disease.  Very few bothered to educate themselves.  They didn’t care enough.

That’s people.  They have their own problems.

For me, my whole life changed.  Much as I didn’t want it to, Rheumatoid Arthritis occupied Centre Stage.  It controlled me.  So I had to learn to adapt.  I learned a few other things too:

 

  1. I am very, very strong.
  2. I don’t sweat the small stuff.
  3. A smile helps.  Mine or someone else’s.
  4. I need to be realistic.  Wishing things were different doesn’t help.  It just saps my energy.  So I work with what I’ve got, and make the best of it.
  5. Worrying about things I can’t change will only bring me down.  I will change what can be changed, and I have to accept the rest.  I have to make the best of what I have.
  6. I am luckier than many, many other people.
  7. I need to prioritise.  I have to choose what’s important in every day.  I make mental lists…What MUST be done. What it would be great if I could get done.  And what is just going to have to damn well wait until tomorrow.
  8. What other people think doesn’t matter.  This one was huge for me, but there is no changing other people’s opinions.  Some will always thing I am a malingerer.  Some will never understand.  Some will always make nasty remarks.  Some will always tell me their pain is worse than mine.
  9. Pain and happiness are NOT mutually exclusive.  I have to try and do the things that I enjoy.  There are some things that are now impossible.  Others that I can still do, but not without pain.  Others that I can do on some days, but not others.   I can still enjoy these things.  It’s very, very important to keep doing the things that make me happy, even if I can’t do them the same way I used to.
  10. Patience.  I can’t do it all myself anymore, or at least not all in one day.
  11. How to ask for help.  No wait, I’m still struggling with this…
  12. Who my friends are.  My real friends.   My real friends understand my limitations.  And they still want to spend time with me.  And not just when I am ‘well’.  The people that make me feel guilty for cancelling at the last minute, or saying no to an invitation, or not participating in their sky diving adventure are not friends.
  13. I can do most things that healthy people can do.  But it will take me a lot longer, and it will almost certainly hurt me a lot more.
  14. Doctors don’t know everything.  They are not gods.  They cannot fix every problem.  They can offer options.  The responsibility for my health is still mine.  I make the final decisions.
  15. Accepting my limitations does NOT mean I am giving up.
  16. I still have a lot to offer.  I am still capable of a lot of good.
  17. Did I mention I am very, very strong?

 

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Rheumatoid Arthritis, Lupus and Mixed Connective Tissue Disease (MCTD)

I have been diagnosed Rheumatoid ArthritisDiagnosing RA is usually a long and drawn out process in practise, but in theory it’s very simple.

There’s a criteria.  If you meet that criteria, you have RA.

The criteria for Rheumatoid Arthritis diagnosis is a combination of blood work, x-rays or other scans, and clinical history.  If you don’t fully meet the criteria, you have suspected Rheumatoid Arthritis, and if it’s of any severity, your rheumatologist will start treatment right away.  Just in case.

The chosen treatment is dependent on the severity of the disease.  This is also a point and shoot situation.  Medicine is like that…it’s all criteria and protocols.  There’s not a lot of deviation in autoimmune arthritis treatment plans.

Methotrexate is the first drug of choice – the gold standard treatment.  But of course if your symptoms aren’t severe enough, they won’t prescribe methotrexate.  They don’t give you a chemotherapy drug for mild disease.

You’ll be prescribed a NSAID to get the inflammation under control, because DMARDs like methotrexate are slow acting.  It can take a three months for the benefit to kick in.  If NSAIDS aren’t enough, prednisone (corticosteroids) are used to get the inflammation under control.

But what if you don’t quite meet the criteria but your disease is severe?  You get left in a wasteland of wondering what is *really* wrong with you, and if it’s actually something much worse than RA.  That’s where I was for a few years.  My rheumatologist treated me agressively for inflammatory arthritis, but he held back on an official diagnosis until I met the criteria fully.  Some rheumies don’t really care about the criteria – experience tells them if the symptoms are mild and self limiting, or severe and progressive.  The essential thing is that if the disease is moderate to severe that treatment is started early.

My rheumy is always looking for something worse.  He diagnosed Rheumatoid Arthritis when I met the criteria, but he has always suspected lupus.  He started treatment immediately – as aggressively as I would let him.  I was in denial, and refused to believe I really had this horrible disease.  He kept saying it was Mixed Connective Tissue Disease, and I thought that was a better thing that having Rheumatoid Arthritis.  I wasn’t really correct.

So what is Mixed Connective Tissue Disease?

Your body’s connective tissue is the structural tissue that holds your body together.  Connective tissue made of dozens of proteins, most commonly collagen and elastin.  Connective tissue surrounds many organs; cartilage, bone, blood, tendons and ligaments are specialised forms of connective tissue.  So you can easily see that when there’s a problem with your connective tissue, it can be serious.  And how inflammatory arthritis comes into play.

MCTD  is a combination of several connective tissue diseases – Lupus, Sjorgren’s Syndrome and Rheumatoid Arthritis.  In autoimmune diseases, many of the symptoms overlap.  A patient can meet most of the criteria for a disease, but not quite all.  I meet the criteria for RA, but not quite Lupus.  I have elements of Sjorgren’s.

I have the symmetrical joint inflammation of Rheumatoid Arthritis.  My hands and feet are affected, I am in constant pain.  I suffer fatigue, stiffness…all the usual symptoms.  RA usually affects the small joints (so they say) but most of my large joints are also affected.  Most of the joints in my body are inflamed and painful at some time.  It’s just that my hands, feet, knees, hips, shoulders and lower back are always painful.

I’m seronegative, so I also cross over into the seronegative spondyloarthropies.  Although my RF (rheumatoid factor) does pop up positive from time to time.

I have dry eyes and mouth.  My eyes get so dry that I need to put drops in them daily. That would be Sjogren’s Syndrome.

But my arthritis is non-erosive.  I have very little damage visible on scans. This is great news…but it points toward Lupus, where joint pain (arthralgia) rather than swollen and inflamed joints is the main symptom.  Having said that, I do have impressive swelling some days…it’s just not always there.  So I fall between the cracks.  Then there are the other Lupus/SLE signs.  Raynaud’s Phenomenon.  Livedo Riticularis.  Kidney damage.  Muscle aches.  Fatigue.  Anemia.  A positive ANA – sometimes.  All of these things can also occur in Rheumatoid Arthritis though..so it’s back to the criteria.

But I don’t quite meet the criteria for Lupus.  So I don’t run around telling people that I have Lupus…even though my rheumy and 2 other rheumies also think this Lupus is probable.  I’m seeing a fourth rheumy in November.  If she also thinks Lupus, then maybe I’ll believe it.  But there is a big difference between a ‘suspicion’ and having a clinically diagnosed disease.  And ultimately, what does it matter?  The treatments are all the same.

Some people call this ‘rhupus’.  Maybe I’ll adopt that.  One more thing to explain…a conversation starter, a simplistic way to explain that autoimmune arthritis is not just occasional sore joints.  A way to educate and raise awareness.

I tell people that I have rheumatoid arthritis, not mixed connective tissue disease because at least most people have heard of rheumatoid arthritis, even if they have no idea that it’s a serious disease.

I’d probably get a lot more sympathy and support if I told people I have Lupus.  People do understand that Lupus is a serious disease.  What they don’t understand is that severe Rheumatoid Arthritis is very similar to Lupus.  It’s a systemic disease.  It causes organ damage.  It kills people.

It certainly disables.  It is certainly life limiting.  Rheumatoid Arthritis is certainly a serious disease.

 

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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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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.

My first MRI – its just Rheumatoid Arthritis

So I’m gonna have an MRI tomorrow.  It’s going to cost a bomb, and it probably won’t tell me anything I don’t already know.  i.e. My shoulder hurts.  A lot.

I’ve never had an MRI before, because my doc tells me there’s not a lot of point.  It’s just the inflammation of Rheumatoid Arthritis attacking the joint, causing pain.  We know this already.  My x-rays were completely normal, but damage often has to be pretty advanced for an x-ray to show anything.  And the point of all the hideous meds I take is to *prevent* this damage, right???  So clean x-rays doesn’t really mean much…If anything it means my meds are working.  So good then.  I think.

So why the MRI?  Because sometimes you just have to DO something.  Sometimes you just have to *know*.  Sometimes you get tired of hearing “it’s just rheumatoid arthritis.”

Firstly, there’s no such thing as ‘just’ rheumatoid arthritis.  As previously mentioned, inflammatory arthritis hurts.  A lot.  Often a real lot.

And secondly, what if it’s something else?  Bursitis?  An injury? Tendinitis? Something that could be fixed?  Or at least treated differently?

The pain in my shoulder is often severe, and my range of motion is decreasing.  I keep working it through the entire range (use it or lose it), listening to it pop and grind…wondering what exactly is going on in there.  What’s causing all that noise?   I can *feel* it grind.  I can feel it pop…but that used to be painless, if a little…well…LOUD.  Now it hurts when it pops, so I just want to be sure.  And I’m going to spend a ridiculous amount of money on a scan that probably won’t tell me anything I don’t already know… It’s just rheumatoid arthritis.