Is it normal to feel really, really ill?

[mamma1027]

So at last my pains are diminishing pretty rapidly, and all the stiffness has gone, but I feel so ill - exhausted, throbbing headache (not a migraine) and just generally lousy. Is this part and parcel with pmr?

[PMRpro Ambassador]

Yes, it is part of PMR to feel rather flu-ey, for want of a better description. However - the headache worries me a bit as that - in combo with feeling SO ill - might suggest GCA in the form of temporal arteritis. Any visual symptoms or tenderness around your forehead?

The pred deals with the inflammation that causes the PMR pain - it has no effect at all on the underlying cause of the symptoms which is an autoimmune disorder that upsets your immune system. As long as that underlying autoimmune problem is active you may feel ill - it is also the cause of the fatigue and sweats/feeling that your body thermostat has gone AWOL.

Funny - we were discussing this last night at a research discussion - the doctors admitted they don't think of this side, they just assume that the stiffness is better, the patient must be better.

[mamma1027 in reply to PMRpro]

Hello PMRpro, thank you yet again for your reply, support and advice. I have no visual disturbance, maybe some slight tenderness along the line of the arm of my glasses. I can actually feel a pulse here but there is no visible swelling of the blood vessel. Interestingly, on the opposite side I have a vessel which often looks a bit bulged, but doesn't throb and I've had this for a few years. I am very aware of my heartbeat - supportive hubby can feel my heartbeat thumping when he hugs me, but I do know that steroids can effect this. I also feel wobbly, for want of a better word, but have put that down to the steroids.

[Celtic PMRGCAuk volunteer]

Mamma

Yes, as PMRpro has said, it is quite common for many of us to feel really ill with PMR and I echo her worries concerning your mention of "throbbing headache". We get a bit jumpy when someone with PMR refers to experiencing head pain. However, headache is one of the listed side effects of steroids and I believe you are still on the highish dose of 30mgs? So as long as you aren't experiencing any visual symptoms, pain in the temporal artery areas, jaw pain on chewing or nausea/vomiting, then the headache could be down to the steroids. It would be wise to get it checked asap though as you may need a higher dose of steroids (between 40-60mgs) in the case of it being GCA. At least, it must be such a relief to be in much less pain than recently and without the stiffness - you will start to feel better generally once the inflammation is completely under control. Meanwhile lots of rest and TLC.

[mamma1027 in reply to Celtic]

Thank you Celtic. I'm hoping that it is just a side effect of the steroids, but I will get it checked out. And yes, I'm getting lots of rest and heaos of TLC. I learnt the hard way that just because you start to feel better doesn't mean you can resume all your normal daily activities - I probably put my recovery back by a good week. So, despite feeling better, I'm watching the dust settle and the weeds grow and thinking to myself 'so what? I'm going to put my feet up and have a cuppa!'