Home My story High blood pressure and rheumatoid arthritis and mixed connective tissue disease

High blood pressure and rheumatoid arthritis and mixed connective tissue disease

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blood pressure monitor
blood pressure monitor

I’ve been a very strong advocate for exercise right from the start.  I exercise on all but the very worst days.  And I exercise as hard as I’m able.   On any given day, what I am capable of varies dramatically.

I have done weight bearing exercise all my life, long before I developed Rheumatoid Arthritis and Mixed connective tissue disease.  I believe it’s why I have such exceptionally dense bones.  I have been fit all my life.  I suspect if I wasn’t as fit as I was when Mixed Connective Tissue Disease and Rheumatoid Arthritis hit, I would have been in much worse shape, much sooner.

For the last year or more I have been having episodes of strong chest pain, that radiate to my jaw and shoulder.  And ultimately down my arm, and then it just feels like everything hurts.  Even my teeth.  At first I thought it was a jaw flare. But its only on my left side.  And 95% of the time, my pain is symmetrical.  I also have episodes of breathlessness, where slow walking on a treadmill leaves me gasping for air, as if I’ve just done a 100 meter sprint. It comes and goes.  I have told my GP about this many, many times.  He listened, but ultimately ignored me.  Finally, Dr Efficient listened and referred me to a cardiologist.

Yesterday I did an Echocardiogram Exercise Stress Test. The stress test involves walking on a treadmill, where the speed and incline are gradually increased to make your heart work harder, while being hooked up to several electrodes.  Your blood pressure is monitored every two minutes (I think. It might have been every three minutes).

Before and after the test, your heart is examined via ultrasound to look for abnormalities.

After a few minutes on the treadmill, my blood pressure peaked at 205 systolic. (they don’t look at the diastolic in this test).  The cardiologist stopped the test immediately as my blood pressure had peaked too high too fast.  He said continuing would be dangerous.

He diagnosed small vessel disease of the heart, and after looking at my 24 hour blood pressure monitor results, which averaged 149/89 he was openly appalled that none of my doctors had done anything to lower my blood pressure.  He also believes I have cerebral vasculitis, to go with the other brain problems.  There’s more to that story, but that’s not the point of this post.

When I told him that I do this exact thing as my exercise routine, as often as my joints will allow, he was horrified.  He said every time I exercised I threw my blood pressure into a very dangerous zone and risked a stroke or heart attack.

Obviously I was not aware of this.  And THAT is the point of this post.  I believed I was doing the right thing for my joints.  Instead, I was risking my heart and my brain.

Heart disease is the number one killer of people with Rheumatoid Arthritis. 

If you are doing cardiovascular exercise that gets you huffing and puffing, you need to check with your doctor. You need to know what your blood pressure is, and what your cholesterol is.  And your tolerance to exercise, what shape your lungs are in.

Or, like me, you could be doing more harm than good.  Worst case, you could induce a heart attack or a stroke.

I’m not trying to scare anyone.  I still advocate exercise.  But appropriate exercise for your personal health, and under the supervision of a doctor.  I thought what I was doing was appropriate.  I trusted that when my GP said not to worry, I shouldn’t worry.  I thought my rheumatologist was being overly cautious, because my neurologist said it wasn’t a concern.  Even when I was in hospital, and my BP was 156/110, they released me.  Everyone just ignored it.  I went with the majority.

Turns out my rheumatologist was correct.

So talk with your doctor. And know your numbers.  Don’t just trust if he or she tells you ‘its fine’ that it truly is fine. Know your own numbers for yourself.

Even though I was on the treadmill for six minutes, I was at the cardiac clinic for three hours.  They were making absolutely sure that when I walked out of there I was fine.  That I had recovered.

I am allowed to exercise, but only light exercise. Barely raise a sweat type exercise. I will still walk on the treadmill and ride the bikes when I can.  And maybe lift light weights and do bodyweight exercises, but I will not stress my heart and my lungs.  I will keep my body moving and stretch and try to maintain muscle mass and strength and mobility.  But I will not push hard.

I have started blood pressure lowering medication, and it will take a few weeks to find the dose that will get my blood pressure to below my cardiologist’s target of 130/70.

My cardiologist has written a letter to my GP, he dictated it while I was in the room.  I’m both a little embarrassed to give it to him, and grateful  my cardiac and pulmonary health needs are being taken seriously.

He also said exactly what my rheumatologist said.  That prednisone is masking other problems. And that I have to taper off the prednisone, and start the diagnosis process from scratch.  We just have to let me get sicker.  And figure out what the root cause really is.

The problems with my heart are not be permanent, my understanding is that I just need to get my blood pressure lower, with medication.  The problems with my brain are permanent but not serious.  The aim is to prevent more damage.

I knew my blood pressure was too high. I have written about it many times. I just didn’t fully understand the seriousness, nor the potential consequences.

Now I do.

And now I very much want everyone who reads this to understand how important keeping their blood pressure within the normal range really is.  And that pushing your body as hard as you can is a very bad idea if you have high blood pressure.

So please, know your numbers.  Ask your doctor to check your blood pressure regularly.

Anything over 140/80 is TOO HIGH and needs to be treated.

With diet, with exercise (under supervision) and most likely with medication.

Know your numbers.  Please.

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