The truth about living with Rheumatoid Arthritis

#mixed connective tissue disease

Why is your RA not like my RA?

I have been asked many times by people why my RA is not like their RA.  The simple answer is that no one’s RA is like anyone else’s RA!

But more specifically, RA is a secondary diagnosis for me. I was diagnosed with Mixed Connective Tissue Disease ten years ago.  It’s only hindsight that makes me realise how brilliant my first rheumatologist truly was.  MCTD is a rare disease, and it’s a combination of the signs and symptoms of many autoimmune diseases (commonly lupus, scleroderma, myositis, rheumatoid arthritis), without fitting neatly into a single diagnostic criteria. I didn’t understand any of that when I was diagnosed.

Not long after my MCTD diagnosis I DID meet the criteria for Rheumatoid Arthritis, and we focused on treating the RA symptoms, because joint pain and fatigue were the symptoms most affecting my life.  But my overriding diagnosis has always been MCTD, and I have always had more going on, extra-articularly.

Reading through this article, it’s amazing how much of this is me. Joint pain/inflammatory arthritis resembling RA, Raynaud’s, muscle weakness, rashes, fevers, fatigue, hypertension, esophageal dysfunction, hair loss, lung involvement, breathing difficulties, pulmonary hypertension, heart involvement – pericarditis, myocarditis (inflamed heart muscle), mild kidney dysfunction, neurological involvement – trigeminal neuralgia, blood vessel narrowing in the brain, vascular headaches, tiny ischemic strokes and peripheral neuropathy….sound like anyone you know???  These are all diagnoses that have been thrown at me.   It’s practically my medical history right there.   Even the average age is 37.  I was 36 at diagnosis.

And I am truly at the pointy end of the autoimmune cascade now.  Too late to change anything, but if I’d known then what I know now, I would have done a lot of things differently.  A lot.

And no, that’s not pointless thinking, these emotions need to be worked through.  They are not to be swept away in a flurry of ‘think positive!’ or dismissed as wallowing.  I have to sit with these emotions, feel them, and allow myself to feel sad.   My feelings are valid.  My feelings are real.  Band-aiding over the top of them isn’t going to fix anything.  Sweeping them under the carpet won’t fix anything.  Pretending I don’t feel this way won’t fix anything.

I am allowed to be sad sometimes.  It does not make me negative. It does not make me weak.  It makes me strong and brave, to look all of this straight in the eye, accept it for what it is, and then ready myself for battle again.

And then…let it go.  And return to making the best out of every moment. Enjoying the things I can do. And most of all treasuring the people who are truly there for me.

Rheumatoid Arthritis, Mixed Connective Tissue Disease and good advice

Advice…good advice.  Unsolicited, well intentioned, good advice.  When you’re chronically ill, you get a lot of good advice.  Most people mean well, and want to help. But sometimes people just cannot accept that some diseases are, in fact, incurable.  And sometimes people get sick, even if they’ve done everything ‘right’.

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Rheumatoid Arthritis and depression and breaking the rules sometimes

anxietyOk, so depression and pain and chronic conditions. I’ve done this to death, right? No, wrong. I haven’t spoken much about it at all.  I usually I just ride it out, because I don’t usually stay down for long.  I don’t let myself.

Right now I don’t really want to get up.  I know what I have to do. It’s a process.  I have done it before.  It works for me.

I just don’t want to do it.  I’m tired of being strong. I’m tired of doing it all.  I’m just tired.

I’m doing the bare essentials –taking care of my kids.  I’m not really taking care of myself.  I can’t eat much. I have no appetite and nothing appeals. I am hungry, but as soon as the food is in front of me, I just feel nauseous.  I can, however, drink.  And take my pain killers.  And let the lines blur.

I know I shouldn’t be doing this. I should pick myself up. I should go to the gym. I should go get some fresh food and cook some healthy meals.  I should pour the rest of the red wine away, and not buy any more.  I should only take oxycodone when I absolutely need it, not because I just don’t want to deal with the pain today and I want to be dumbed down. I should make some plans with friends and get out of the house, even if I don’t want to go.  I should get out of my track pants.  I should decide on a direction and find the course that will get me there.  And then I should enrol. I should keep my brain engaged and focussed and forward thinking.  No looking back.

This is how I get back on my feet. I don’t do all these things at once. I do one each day.  Maybe even two.  And before long I am OK.  I’m back on the treadmill, literally and figuratively.  I tell myself I’m strong and I pat myself on the back and give myself heaps of credit, because few people know how hard all of this stuff is for me, so therefore no one else is going to do it.  But I know, and I tell myself I am awesome. And that’s enough for me. Throughout this process the physical pain still remains.  But as I’ve written before, you can be in pain and be happy.

But I’m tired.  I just don’t want to do the work.  I want to stay down here a while.  I want someone else to do it for me.

My depressive bouts don’t happen that often.  I’m generally a ridiculous optimist.  But sometimes enough problems hit at once, and I do fall into periods of depression.  But it’s not clinical depression.

Clinical depression, as it has been explained to me, is a medical condition all of its own.  It has no definable cause.  It is a chemical imbalance in the brain that renders the person unable to feel joy and happiness.  Studies have linked these feelings to low serotonin levels in the brain, and therefore serotonin reuptake inhibitors can increase serotonin levels and improve mood.  Other medications work on dopamine receptors. I’m far from an expert, but I have taken a few anti-depressants of various classes.  I didn’t believe I was depressed, but sometimes doctors bully you into trying their drugs.  They say things like ‘If you don’t WANT to get well…’ and make it clear that if you won’t try the medication, don’t bother complaining to them.  You start to question yourself…because if you are depressed, you might not know it, right?  So I have tried several. They don’t work for me.

I think this is because there is another type of depression.  A type of depression where there are clear causes for depression.  When any thinking, feeling person looks at the circumstances, and they can understand why you might be depressed. Why you might be feeling beaten.  Why you might be down.  It’s possible to see a clear cause and effect.

Maybe this isn’t really depression. Maybe it’s unhappiness.  But knowing and understanding the reasons for your unhappiness is one thing.  Changing them is quite another.

My situation looks bleak.  43. Painful, progressive disease.  No employment prospects.  No financial future.  Two kids to care for, one of whom has special needs.  Alone.

I can’t change any of that. Ok, maybe I could change the ‘alone’ part.   I am tired of being alone.  I miss having someone to love. Someone to share things with.  The important things and the trivial things.  But it’s hard to meet people from the couch. And you can’t decide to love someone.  And you can’t decide to stop to loving someone. It’s out of your control.  And loving someone would ultimately mean depending on them.  Uh-uh. No.

So normally at this point I go into damage control.  I follow my rules and I get off my butt and start putting myself back together.

I am super woman. I get back up and do it fast before the depression takes hold. I do all the right things. I tackle it like I tackle everything. Head on. And for me, it works.

But I am viewing it differently this time. I don’t need to be superwoman. My body, or my mind, or both, are telling me to rest.  And for once, I am going to listen.  I am giving myself time.  I am taking it easy on myself.  I don’t need medication to alter my mood, or suppress my feelings. I am not going to override my feelings and tell myself I shouldn’t care.  My feelings are valid.  I’m allowed to be angry. I’m allowed to be sad. It’s understandable that I am tired, and lonely. I thought it was stronger to forgive, not dwell, and move on.  This time I don’t care about what the ‘strong’ thing is.  I don’t need to be strong all the time.  I don’t have to forgive people who have wronged me. I don’t have to work at getting along with them.  I don’t have to spend time with anyone if I don’t want to.  There are a few people who can make me smile just by walking in the room.  Those are the only people I want to be around right now.

I have potentially brilliant or potentially devastating news due next week.  It’s most likely going to be the latter.  I’m not going to paint my smile on and pretend all is well, as I usually do. I’m going to lay low until I feel better.

And I will feel better.  That’s the advantage of being 43 and having been through some crappy experiences. I know exactly who I am.  I know what helps and I know what hurts.  And I know that I will be happy again.  When I am ready.

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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