Heart muscles

[Gardenbay]

As PMR affects the muscles, does it affect the heart which is a large muscle.

[PMRpro Ambassador]

Not in the same way as far as I know. It affects the muscles because it probably affects the blood supply but tends to be the peripheral circulation. It might be a different matter if you had LVV (large vesselvasculitis) which affects the large arteries in the trunk.

[Songbird69 in reply to PMRpro]

A Thanks. I had always wondered about that too. My heart does some funny things at the best of times, but I’ll strike that off my list of worries for the mo.

[PMRpro Ambassador in reply to Songbird69]

What sort of funny things? Have they been checked out?

[Songbird69 in reply to PMRpro]

Well! I have a benign condition which makes my heart feel lumpy - although it seems since Pred that is more prevalent. I have periods of my heart beating very fast which comes out of nowhere. I notice it more when I go to bed. On occasions I wake up with it happening.

Then, five years ago, after my partner passed away suddenly, I ended up in resuss with Afib. I was put on MultAQ and after about three months it disappeared. It was put down to post traumatic stress - but now and again, I have seconds of it happening.

I have mentioned all this to the GP - have had several ECGs and they tell me I am normal. Of course none of this tends to happen when they run the ECG.

[PMRpro Ambassador in reply to Songbird69]

Never does - you need multi-day monitors to get it. I have a/fib caused by the autoimmune part of PMR. It is paroxysmal - no warning, just happens, except when it was triggered by i.v. diazepam when it lasts for hours, That has happened 3 times - now it is on my notes!!! It is also worse when I flare - definitely associated with the vasculitis. I'm on permanent anticoagulation therapy - essential with paroxysmal a'fib if the episodes last more than about 20 secs - that duration is a bit equivocal but I'm happy on Pradaxa, I feel safer. In my case pred reduces the a/fib, for some people it causes tachycardia/arrythmia. But it doesn't matter WHY you have an arrythmia, it needs dealing with.I do find GPs in the UK very dilatory about a/fib. Though to be fair, I complained here repeatedly about waves of something but they never showed up on a monitor. I knew there was something nasty. After a bigger one than usual, I fell and hit my head and had a TGA (transient global amnesia) as well. In hospital they put me on i.v. diazepam because I was agitated (husband not there to say no and not on my notes) and scared themselves witless when I went into a/fib. And was having bradycardias with 7 second pauses (that's a pulse under 10/min), No wonder I was having dizzy spells. A pacemaker has sorted that, I was lucky - a friend had a dizzy spell at the top of the stairs - he fell and is now quadraplegic having broken his neck.

[Songbird69 in reply to PMRpro]

OMG. You HAVE been through it. I guess I should go back to the GP again then - certainly Pred makes it all worse and when, once upon a time when I managed to get to 1mg Pred, Inoticed a vast improvement all round.

I just seem to lurch from one medical issue, falling headlong into the next, without a breather. ☹️

Certainly the Afib episodes don’t last for more than 20 seconds these days, but the stress in those few seconds waiting for it to normalise is high. I thought I was going to die when it happened the first time. Magnesium infusions sorted it in A&E. My blood pressure was so low when they discharged me on meds that I had to hold onto the wall to exit the hospital. They saw me do this, and just ignored me. Not an experience I would like to repeat!

It certainly shouldn’t have taken you falling over to get the treatment you needed, but thank God you got there in the end.

[PMRpro Ambassador in reply to Songbird69]

You could try taking magnesium at home - obviously not the i.v. sort you get in hospital but here they give you a small bottle of a liquid magnesium supplement when you have an episode but it is one you can buy at the pharmacy - magnesium supplements are very popular all over mainland Europe for avoiding muscle cramps. I do find it makes a big difference and since mine start with odd short episodes but often progress to last an hour or more, I discovered taking magnesium as soon as I noticed it stopped it in its tracks.

[Songbird69 in reply to PMRpro]

I do take a 100mg magnesium citrate tablet at night. Presumably that does the same thing? Only more slowly than liquid?

[PMRpro Ambassador in reply to Songbird69]

Probably. I noticed palpitations this evening - it was the alternating normal and fast so I took a dose of liquid magnesium and half an hour later it was gone. They don't bother me much - unless it coincides with cooking dinner and I just don't feel like standing about ...

[Songbird69 in reply to PMRpro]

I think I may try the liquid in that case. Is your liquid magnesium citrate or another type? I would rather buy the one that works for you!And what is the dose you take for that?

That may solve my fast heart rate that sometimes happens the moment I

hit the pillow.

[PMRpro Ambassador in reply to Songbird69]

Mine is magnesium pidolate - as a product called Mag2. But I suspect not a UK option unless this lot deliver to the UK

globalpharmacy.it/en/produc...

[Songbird69 in reply to PMRpro]

They do! I was getting quite excited - put two in my basket - and then realised that I had to pay double to include delivery. Going to try to find out if there is a U.K. version first but this is a great fall-back. Thank you for sending over the link. 🤗

[PMRpro Ambassador in reply to Songbird69]

A friend didn't stock up on her lippy before the final Brexit - so now getting the 4 euro lippy means a 135 euro order ... I can't find out what the regs are for me to get it and send it to her as a pressy - will it cost both of us an arm and a leg?

[Jocelyn344 in reply to PMRpro]

A simple answer to getting magnesium is Bisodol tablets, each tablet contains 68mg Mg, and you get calcium and sodium bicarbonate as well. Can be bought over the counts. Has helped me a lot with odd ectopics, as well as the beta-blocker ( very low dose)

[PMRpro Ambassador in reply to Jocelyn344]

I have no problem here at all - it is the UK that is a bit behind

[Songbird69 in reply to PMRpro]

Yeah - back in the dark ages here!

[PMRpro Ambassador in reply to Songbird69]

[Hidden in reply to Songbird69]

What funny things because I am told that I have stenosis of the aorta and that soon I will have to have a replacement heart valve. But they claim that this has nothing to do with me having PMR and the fatigue I am experiencing from the Pfizer vaccine.

[Songbird69 in reply to Hidden]

I had just replied to PMR Pro, and then spotted your reply. I don’t know what stenosis of the aorta is. What are your symptoms? No one has suggested anything like that to me, but I do worry about my heart sometimes - and that of course makes it worse!!

When I was in hospital my resting heart rate was around 90. It worried me - but didn’t seem to bother them at all! It’s not normally that high.

I hope you get yours sorted soon. Can it be controlled by medication in the meantime?

[Hidden in reply to Songbird69]

Best thing is to Google it. Not much that one can do about it, I didn't know I had it. Usual symptoms are shortness of breath on exercise.

[PMRpro Ambassador in reply to Songbird69]

mayoclinic.org/diseases-con...

The valve between the heart and the aorta gets furred up and sticky so it doesn't open and close properly

[Hidden in reply to PMRpro]

As in my case.

[cranberryt in reply to PMRpro]

It was my understanding that PMR affects the large joints which then refers pain to the muscles so it’s not really attacking the muscles directly. Is that the correct understanding PMRpro?

[PMRpro Ambassador in reply to cranberryt]

It doesn't affect the joints per se - it affects the soft tissues around the joints and the synovium (lining of the joints) but doesn't damage it. However, there is another condition called myofascial pain syndrome (MPS) which is now being recognised as part of the pathology of PMR. It affects the fascia, the transparent skin over muscles that you will be familiar with from joints of meat and poultry and it is what makes the large muscles so tender in PMR. It also leads to areas of inflamed muscle fibres in the large muscles which you can feel as knots and which are called trigger points - the same as the attachments between the muscles and bones:

spineuniverse.com/condition....

In the image you will see two particularly large yellow spots, one at waistlevel and one a bit lower - the latissimus dorsali muscles and the top of the piriformis. They can be a link in back pain from MPS in PMR.

jrheum.org/content/jrheum/4...

[cranberryt in reply to PMRpro]

Thank you so much!

[Stellamavis in reply to cranberryt]

Before my PMR diagnosis the only way I could describe the pain in my biceps was akin to them being shredded like pulled pork..😊