PMRproAmbassador4 months ago

I get what I'd assumed were muscle twitches in my shoulder that are probably in time with my heart beat. Being my left shoulder - had wondered if it was the pacemaker but is definitely shoulder not heart ...

Sophiestree in reply to PMRpro4 months ago

Yes. I know what you mean re left side and so did not marry it with heart. These are proper catch you thumps like a tension machine might do. I'm not going to dwell on them, was just curious if anyone had ever had the same... most disconcerting at the time.

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PMRproAmbassador in reply to Sophiestree4 months ago

I can imagine!

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Sophiestree in reply to Sophiestree4 months ago

not tension machine - tens machine, like the Slendertone I remember my mother using about 50 years ago 😂

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PMRproAmbassador in reply to Sophiestree4 months ago

Don't tell me you sneaked a try!!!!!!

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Sophiestree in reply to PMRpro4 months ago

Ha ha, we all did, it was hilarious. How high can you go to watch your stomach flinch!

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PMRproAmbassador in reply to Sophiestree4 months ago

Wish I'd been there!!!! Did your mum know?

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Sophiestree in reply to PMRpro4 months ago

Hmmm probably not. She was a bit fierce!

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SnazzyD4 months ago

It’s odd isn’t it, especially the altered sensation over knocked areas and possibly pressured areas at night. Sometimes shocks in the arm can come from the neck but could this be neurological from some other origin. Keep an eye on it and if it keeps up, I’d get it checked.

Sophiestree in reply to SnazzyD4 months ago

You're right, I need to start logging it. Ignored the first few but yesterday was a different story. Always when I'm walking too with my arms down and doing nothing, not even carrying anything .

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SnazzyD in reply to Sophiestree4 months ago

If it is quietly ramping up I’d get your spine checked at the very least in case there is some nerve compression going on. There are other explanations that also need ruling out too. Is it associated with any weakness at the time? Are you taking enough magnesium and B vitamins and potassium rich foods?

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Sophiestree in reply to SnazzyD4 months ago

This is really interesting as my right hip is hideous at the moment and starting to go down my leg. Even after my PET CT and ramping back up the steroids to 15mg, the other back pain has gone, but this feels worse, maybe because the other pain has gone and I am way more aware of it. I'd give it a pain scale of 6.5 today.

I will definitely keep an eye out now you have alerted me to that. Although I am sick to death of ringing the doctor all the time. Having never rung them other than having a yearly blood test for my underactive thyroid, I feel it is constant now, although they do seem to enjoy talking to me when I do ring, even the awkward ones!!

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PMRproAmbassador in reply to Sophiestree4 months ago

Take advantage of that!!! Means they are interested ...

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Sophiestree in reply to PMRpro4 months ago

Yes, I think I make a change to the norm. There is one in particular who can be fierce and she just loves talking to me! Too funny

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Blearyeyed4 months ago

Definitely keep logging the incidents on each side and go to see the GP to discuss it if it gets worse , or continues for a few weeks beyond the time when your body has got it's balance back after the big swing in steroid dose.

The right side pulsing sounds circulatory or nerve based . It could merely be that the inflammation that built up while your dose was reduced is clearing now you are on a higher dose and any impingement to blood flow or nerve responses down the arm are improving again. Sometimes it can be the opposite , and steroids can affect circulation strength and the blood also needs to pump a bit harder to reach where it needs to go , this can also cause the same feeling. Slow or weaker circulation can make itself more noticeable when your arms are held down at your sides.

If it is more common then keep the lower part of your arms raised or move your arms when you walk and it will reduce the symptoms.

The sudden nerve twinges on the left side or if you knock yourself can be caused by Neuropathy or heightened nerve responses to pressure. Higher steroid doses can cause a more sensitive nerve response . Nerve strength can change and nerve responses can be altered with steroid use for various reasons. You might try giving more support to you left side / arm with pillows at night to reduce twinges. Skin is more fragile on steroids so we can bruise more easily and nerves near the surface of the skin can give a bigger nerve response.

Taking Magnesium and Vitamins D and K2 daily which comes in a handy spray supplement by BetterYou can help with the nerve issues relating to taking steroids and chronic health .

Sophiestree4 months ago

That's really helpful, thank you so much for replying. I am definitely realising I need to acknowledge all of these things more than I do, which is ignoring them most of the time.