i hope people don't see my name and say "oh no, here comes that whiny woman from the States!"
I've had a rough few days. Thurs went to a funeral and was really quite pleased with myself for getting back and resting, and felt pretty good ( altho my " rest" was a 2.5 hour nap...) . Friday I was out of sorts... Very drained, tired, emotional and overall just unwell. Saturday was similar although I discovered this support site and it was very encouraging... But I was definitely low. I began having a few lightheaded spells. Sunday I slept almost all day. Got up for a couple hours midday and still felt some light headedness and went back to bed. Overall, not severe... Just aware that it was there. Today I feel weak and a little shaky. Pain in my right hip ( which I have a long history of, but not since steroids started in January .) some tightness in my neck, mild headache...But after all, I was in bed for many consecutive hours. I don't want to second guess myself but I'm wondering... Can this be a flare? My primary complaint is feeling drained, weak, lethargic. Toe pain from Fri/sat has not returned. I felt feverish Sat. but afebrile. Now every twinge makes me wonder if this is how a flare begins? I definitely don't feel well, but wonder if I am overthinking it. I am on 10 mg Medrol, amitriptolene 25 mg at bedtime, Prozac 40 mg....
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Zacsmimi
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Emotional stress can trigger a flare too. It could be a flare - but it could equally be you have picked up an infection. Some people find they have no infections on pred, others get everything going.
You do sound to be flattened by whatever it was - I'd run it past the GP.
so how can I tell? The GP is very nice, and he will say, Hmmm, thats interesting... I see the rheumy in about 10 days and by then, I would think it will be obvious. Is a flare always painful and intense? is it the same as the original onset?
How can you tell? I honestly don't know - and I doubt whether even the GCA experts like DL do either. She has given you a very good reply - you will have to learn how to cope with this period of being out of control, out of your comfort zone, and it is something we can't do for you, however much we would like to.
On the other hand - if the symptoms get worse then you have to contact your rheumy and discuss it with them. If your GP is only going to offer a "Hmm, that's interesting..." then maybe he isn't the right doctor to be caring for you - but that is also something only you can know. No doubt he'd send you a check for it!
A flare may be different from the outset - there is no way of knowing, but the symptoms are usually fairly typical. If you get any visual effects then get to the doctor asap, whatever they are. Beyond that - it is a steep learning curve!
Think you probably need to see doctor to rule out any infection et al, if only to put your own mind at rest.
Plus, as PMRpro says, emotional stress- the funeral- can cause as much of a problem as physical illnesses.
I also think, as previously discussed, you are so used to being in control, and now you find yourself out of that comfort zone, that you just feel that everything is getting the better if you, and it manifests itself in the fatigue that's haunting you at the moment.
Everybody deals with PMR, GCA or any other chronic or long term illness differently, some need more help than others to come to terms with what is a life changing situation. If you feel you might benefit from talking to your doctor or a therapist, then there's absolutely no shame in that whatsoever. Everybody on this forum will help you all we can, and whilst we may be experts in living with PMR GCA, most of us are not equipped to help you with your innermost thoughts.
Please seek advice if you think it would help - the first step is always the hardest, but you'll be surprised how much easier it becomes after that.
After reading all these posts about stress, think that's how I had my flare back in January although I was weaning down quite a bit. I had attended 4 funerals in three months of some of my closest and long-term friends. So I definitely do agree that stress plays a big part in our condition. Sometimes, it is just so hard to stay calm and stress-free. I try praying a lot and try to relax on days when I feel really weak and upset. Hope you will feel better soon.
I am so grateful to all of you...I can't begin to tell you how exciting it is... I feel like I stumbled onto a gold mine. I saw my therapist today and she was so pleased (as am I ) that I am hearing the same message from Multiple sources... Keep a journal... Find a way to be at peace with this, give up your need to be in control. It isn't that this was new to me, but being from people who have walked this walk inspires and encourages me that I CAN do this. Baby steps, as someone said. Thank you thank you, I look forward to the time when I can offer comfort and reassurance to someone else on this journey!! But for now, I WILL learn to love myself, care for myself, nurture myself... Because I can be nothing for others if I remain a victim. Time to give IN (not give up) and learn to roll with it. ( see? I listen!!) I did up my dose today and pain vanished within a few hours. I'm going to do alternating days between 8 and 10 mg until I see rheumy on Monday, and get tabs other than just the 4 mg. ones, to give me more flexibility if needed. I'm going to ask for labs, too. I am done being afraid of the unknown. Thank you again, so very much.
Zacsmimi, well done! I'm so grateful to this forum too. Xx
Good luck.
Yesterday I did too much and today I am in a lot of pain,stiff ,shoulder is agony neck is stiff and painful .Headache and left side of face feel like I have had a hefty slap from someone . The trouble is we think we can do stuff and we do it . We pay the price its frustrating. I have rapidly gone from full time long hours self employment which I struggled to do for couple more years than I should have done , to part time work to nothing after trying to kid myself I was superhuman for too long and making myself ill .Emotional stress YES . but the emotional stress of dealing with this illness when thinking Its not so bad today so I can be ridiculously over ambitious and then finding the there is a payback .I do think the conditions of the illness its self create some emotional stress too . Slow down try to realise you have to be aware that this is a very wearying condition but also if you realise you have done too much of whatever ,Slow down ,stop ,make no excuse .Pace yourself . You can gain some control .
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