For several days i have been trying to unravel what is happening and why. I have been feeling stable on 22.5mg and on agreement with advice to reduce at that point have gone down to 20mg. 4 days ago on a normal walk in afternoon 2k the fatigue was bad. Last 500m I felt that feeling when you get up too quickly. Not blacking out but you know I hope. Anyway it's been more frequent and earlier with no apparent reason because I am genuinely taking it easy these days. I have absolutely little energy and strength seems diminished. Hard to push weight up off seat, stairs and weight same. BP and heartrate ok unless I do stuff when feeling this way and then heartrate picks up. No prior adverse reactions to the medications. Fluid swelling gets worse towards end of day and back to reasonable in morning. Have been somewhat constipated but that seems to be improving. Haven't felt like eating much and still full. Sleep seems ok but obviously not a normal persons span . Yesterday did another scrape down whole left forearm so not good. About 9" but these changes were before that accident. Any idea why this is happening ?
Blood Supply, Poor Balance and Low Energy. - PMRGCAuk
Blood Supply, Poor Balance and Low Energy.
PMR is an illness. Sadly like any illness you do not feel at your best. Steroids can manage the pain for us, but they can cause side effects, while PMR can cause the fatigue and make us feel washed out.
thanks piglette. I well understand the washed out feeling now but it is the concern of this reduction of blood to the brain possibly caused by the heart not being capable of serving its proper function in what are unstressful circumstances. it might be something elseand was just wondering. Today seems ok so far. Woken up today with dog barking at sheep antics.
If it is that low you will pass out - the body taking action to stop the activity that is too much and putting you horizontal to improve blood flow to the brain! But consider potential risks ...
cheers...I think PMR. don't want to be on my back unless I lay down intentionally.
No me neither - but it happened to me and I hit my head! Quite a dramatic black eye and a badly twisted knee, It happened to a friend when he was at the top of their spiral stairs - he is now dependent on 24 hour care because he broke his neck in the fall.
Sorry I can't add anything to suggest an explanation for what's happening for you, but I can definitely sympathise with the up and down, unpredictable nature of GCA in particular. I'm currently going through similar myself as I gradually reduce pred after my diagnosis (on top of PMR) back in late May this year and I'm getting all sorts of weird things happening, some of them similar to what you've described. Most are minor and probably pred-induced, but not all I suspect.
But as a mind is a strange and wonderful thing to own, of course that skitters all over the place wondering "What the … is going on now! For me it's the not knowing what any given day will bring that I find particularly disconcerting. There's always something isn't there! As Piglette says though – it's the nature of the illness.
One little thought just occurred to me: I find when I get lightheaded, that it can occasionally be blood sugar related and eating something can help a little. If you haven't been eating much, could there be a connection?
Hope you can find out what's going on so you can know what to do or the symptoms resolve by themselves. Good luck!
How long since reduction have you felt like this?
Do you think it might just be body adjusting to lower dose (I.E withdrawal) - bit extreme maybe but possible…or has it been enough time to be the start of a flare?
Whatever, sorry to hear about it….and obviously if continues you need to discuss with doctor.
hi DL. don't think it is reduction related, can't be certain obviously. It might be yet another flare starting. I have bloods and a FtF with GP on tuesday 2nd so will discuss. Itis just so frustrating. I have been wondering of late whether it is the body sporadically trying to get a handle on the condition and trying its own corrections which get all confused with the medications we take to try and control it. Like two competing forces working out of sync.
Well if it is a flare, then you know what to do...even though you may not want to.. and as PMRpro says if it is something new, it as to be managed as well. As we know, life catches up !
understood DL. will do. today has been slow and uneventful but am completely flat this evening. Prepared supper and enough timber for fire tonight otherwise zero.
Chopping/splitting logs? …hope not -even splitting kindling may be enough in your current situation…
you may be right. Nice roast chicken and homegrown carrots and potatoes, not too many. So bloomin debilitating. heyho
Sounds lovely… and yes it certainly be!
You have a serious systemic disorder - you are not as healthy as you used to be, If you have heart problems, whether they are due to the GCA, the pred or something else, then YOU have to accommodate them by adjusting your activity levels.
I have arrythmia problems which are due to the a/i disorder effect on the electrical cells in the heart which govern heartrate. I used to develop quite severe arrythmias when out walking and meeting a steep part of the path - a lot of those around here! The tachycardias were often followed by a sharp fall in heart rate to bradycardic levels - and I would have waves of faintness which usually passed quite quickly. Eventually they got to the stage where I was having 7 second long pauses in heart beat - a pulse of IRO 10 per min! They passed quickly but were long enough to cause collapse if I was standing - just think about potential risks! I have a pacemaker now - my HR is 60 most of the time but I still have occasional tachycardias followed by periods of a pulse in the low 40s - the PM doesn't kick in until then so I am safe but I do feel rather ropey during them.
I'm afraid it something else to learn to live with.
Just echoing DL , how long is it since you reduced? Pred is such a tricky thing that it does not always conform to expectations. I'm not saying it is pred, but you have been on the 20-30 range for a while so it may be up to all sorts of symptom wackiness for a while as your system readjusts. I remember many days when I could hardly get to our gate to go for a walk and I put that down to pred variations rather than GCA. So frightening. This was not just for the few days after a reduction - it could happen anytime and was often better after a reduction (once the withdrawal effects were over).
I know you are taking it more easy, which is great, but you also have the responsibilities of your farm which must weigh on you. Sometimes we are still fighting things at a really sublte level. Are you able to lie down with a book and snooze when you feel you need it? Have you thought about trying things based on relaxation and letting go like yoga, tai chi/qi gong or meditation? (Sorry if I have mentioned this before, memory definitely not what it was!) X
I also have periods of dizziness, usually in the morning, which seem to follow a pred reduction. I hope yours is improving now. But I think if you do 2km a day then you are not doing so badly!
cheers. but haven't been able to last 2 days. low bp and high heart rate before bed. hope tomorrow is better. The faintness feeling isn't time specific but from any seemingly innocuous effort. It can be any time and therefore I think a change in my physiology whether pred. or condition related. It could also be from insufficient oxygen as lungs feel a bit full as I wheeze a bit now and never did before. That could also be a hangover from my annual hay fever which as on anothe rthread I don't seem to have been aware of since taking pred. It is all so tangled.
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