pain by pacemaker site

[Westie2012]

The last 10 days I’ve had pain around my pacemaker , started as just a mild niggle that I only felt a few times a day , it’s been gradually getting worse , last week I was woken up by the pain in the early hours and called 999 as the pain was so bad , all tests ok , I’m still in varying amounts of using through the day , if I reach forward or lean over it causes a sudden bout of oain , overnight it’s much more painful than usual . Saturday it was really painful on movement so I called 111 and was advised to get checked over again , I was in agony when anyone pressed on the pacemaker , 20/10 pain level. Anyway today my daughter is back at school and when I was walking up to school I had sudden pain by the pm 9/10 pain score that settled after I’d slowed down it gradually went over a few minutes . Heart rate had gone much faster , I could feel it racing but I was walking quickly at the time . I just don’t know if I should accept that I’ll always have varying levels of discomfort and pain . I wouldn’t have thought that it’s normal to get pain by my pacemaker when I’m just walking on flat ground .

[Hidden]

Hello

I know this is something I know nothing about but reading your post I would not settle with this and I would contact my GP and ask to be referred back to the Consultant unless you are still seeing one which in that case I would phone their Secretary tell them what is happening and you need to speak with them

Let us know how you get on x

[Westie2012 in reply to Hidden]

thank you , I’m seeing my cardiologist next week

[Hidden in reply to Westie2012]

Hello

I am pleased you have an appointment get everything written down you want answering and it would be nice to hear how you get on x

[Beejaysee]

hello Westie2012

I agree with BeKind28, this is an urgent matter for your cardiologist- your GP could refer you as an emergency.

You shouldn’t be having pain at this level, in my non-medical opinion, and the fact that it started as a niggle and has risen to such a high threshold plus the pain when the PM is pressed could indicate an infection.

I had an infection in the PM pocket - 3 months post-implant- which was red and sore to the touch and getting worse over days. I saw my GP at 4pm on a Friday and he emailed my cardio who phoned me at 10am on the Saturday and by 4pm I had my PM and leads removed (explanted) and put on IV antibiotics for 4 days before having the new PM implanted on the other side (the original pocket couldn’t be used because of the infection).Their concern was that the infection would go down the leads to my heart, not a good outcome.

You may not have the same as me, but your cardiologist should check.

Good luck

[Westie2012 in reply to Beejaysee]

wow you’ve been through an ordeal , hope you’re doing ok now , there’s no obvious signs of infection , I’m seeing my cardiologist next week

[Icenae]

i am on my 3rd pacemaker. Never had anything like this. You need to contact your cardiologist/ep.

[Kwakkers]

My defibrillator (fitted 2011) felt like having an Olympic medal round my neck, it was so heavy. That disappears as you get used to it. You DO carry a GTN spray with you at all times....don`t you?

When you feel it pulling, short of breath, giddy, etc. STOP, take a whiff of spray and after a couple of minutes, proceed. When walking to the school, allow an extra 10 minutes. It`s all a a matter of adjusting and listening to your body.

It bloody hurts when someone brushes/pushes past you where the machine is; that`s why we were told to stop contact sports. My erstwhile training mates at the judo club didn`t want tp know me.....selfish b.......s, haha.

It was a year before I felt fine, but with 1200 other patients in Manchester attending our quarterly support group, there were oodles of stories.

Ta-ra chuck.

[Westie2012 in reply to Kwakkers]

I don’t have a gtn spray , I have a pacemaker not defib, seeing my cardiologist next week

[Kwakkers in reply to Westie2012]

Good for you. Ask him/her about the spray. All of us with implanted devices were told to carry it (backup)in case of angina. That was in Manchester. Maybe different elsewhere.

Good luck.

[Westie2012]

Thank you to you all for your replies and advice . I spoke to someone really helpful from the pacing team this morning and had a chat , I explained what’s been happening , she said I shouldn’t get severe pain from pm just walking around or moving , it isn’t going to cause any problems but it shouldn’t be so bad that I need to take pain relief either . I’m going to see my cardiologist next week so he can check the pm area , she said the only solution is to have it repositioned again but that cardiologist will be reluctant to do that and I wouldn’t be that keen on having another procedure . I’m hoping things settle down but at least I know I can see my own cardiologist to discuss things if I still need to.