Quick back story, as I had a PET CT on Thursday I was trying to reduce the pred quite radically in the hope it would give a better picture of my inflammation, and so as soon as it was done, I took a bigger dose and have done for the last few days. Symptoms radically better but still not great, I would say a 60% improvement which I am more than happy with as towards the day of the scan I couldn't really do anything.
Anyway, the point of my post is that for the past week or so I have had the weirdest pulse shocks in my right arm and more specifically the pad of my right hand. The first few times it was only for a couple of minutes, today over 10 minutes and really strong.
I have also noticed that if I slightly hurt myself, a gentle bash on something, the pins and needles are quite intense and I also have often woken up with them, but weirdly on the other arm.
It might be nothing, but just wondered if anyone had had anything similar.
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Sophiestree
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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 ...
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.
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.
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 .
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?
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!!
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 .
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.
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