dizziness and weaknesd

[Rainb84]

I have just had a major flare up of PMR. At first the doctors thought I had a bacterial infection, then internal bleeding as I was anaemic, my CRP was extremely high for weeks. Eventually after 2 hospital stays and 6 weeks out of work, a diagnosis of systemic inflammation was given. I’m currently having a weekly injection of tocilizumab and 10mg steroids. My PMR feels under control but I’m feeling intense dizziness with any activity and a weakness especially noticeable in my arms, something I never felt before. Is this just part of the recovery after being so unwell ?

[PMRpro Ambassador]

Hi and welcome - sorry to hear you have been so unwell.

I don't think it is unreasonable to come to that conclusion. How long were you confined to bed in that time? As soon as you are confined to bed, you start to lose muscle mass and it takes a while to recover it - and longer of course if you aren't in a position to exercise to build that muscle.

[Rainb84 in reply to PMRpro]

Thanks for your reply.

I was two weeks in hospital and at home for another 3 weeks, sleeping a lot. I suppose the dizziness and weakness just took me by surprise. I need to be patient. I was very keen to be back in action but it’s a slow comeback.

[PMRpro Ambassador in reply to Rainb84]

I think it is fair to say you really have been seriously ill - and systemic illness can have a massive effect on the "body substance", all the cells, muscles, organs at every level. And you don't recover overnight. You will get there - but it will be slowly, at first at least.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are feeling so bad, but sounds as if you have been through the mill… and unfortunately we don’t bounce back as well as we used to, or maybe expect to.

You will get there, but slowly 🌸

[Rainb84]

Thank you so much for such supportive responses, it can be lonely, worrying and hoping you’re doing the best you can to get well again

[Sillydogsmum]

Have you discussed this with your Dr? If you have already been anaemic you might need your blood testing again to check this out.

[Rainb84 in reply to Sillydogsmum]

Yes I’m getting frequent bloods and my haemoglobin was up this week to 12 first time above 10 in weeks. It’s my first time on this forum even though I’ve been diagnosed with PMR a year now. I really kind of shuffled through last year. I was up and down on the steroids and to be honest I didn’t fully understand what I was dealing with. I stayed on 5mg for weeks even though I was very sore. Then in January I became extremely ill. It stopped me in my tracks and I really had to start learning about PMR. This forum is really good and so many have responded with good advice. I am also going to buy the book recommended here by Dr Kate Gilbert. Thank you

[Sillydogsmum in reply to Rainb84]

Perhaps still worth discussing intense dizziness and arm weakness with Dr if it persists......you dont want to be adding to your woes with a fall or such.......🫣.

[Rainb84 in reply to Sillydogsmum]

Definitely will discuss it, thank you

[PMRpro Ambassador in reply to Rainb84]

Just a note - she isn't a medical doctor though, just a patient.

[Broseley]

Anaemia can make you feel dizzy, tired, breathless and weak. Give your body time to recover. I had severe anaemia when I was 6 years old. No cause to my knowledge. I remember having chest pains and not wanting to go on holiday. It was only when they got the photos back from holiday that my parents realised how ill I looked. I was prescribed some horrid green medicine that made my poo black and gave me constipation (iron of course but I didn't know that). But it took several weeks for me to feel normal again. As an older person, your body takes longer to recover. Look after yourself.

[Mgpa]

I have injections of Toc every week together with 2.5 Mg Pred and have no side effects at all.

[Rainb84 in reply to Mgpa]

Ok I think my dizziness and weakness is related to recovery , thanks