Yesterday I forgot to put gammon on to cook which needed two and a half hours. Had to made dash to shop to feed family and grand kids who eat with us two nights a week. Today was ahead of myself put chicken in at correct time. Picked grand kids up from school checked on chicken.... had put it a gas 2 instead of 5..... Omelettes for dinner tonight then. Then forgot it was in for the next two hours until hubby asked when came in. Only had to do that, hubby does everything else !
I had a job that I had to be on top of everything ,was challenging and forgetting things would never have happened. How can PMR take so much from you. Apart from the pain. Intense hip pain at the moment. The worry about reducing and now I am worried I may have the start of GCA . I have a steady mild pain in right temple just where my glasses arm sits, little sharp pains on and off over scalp but not tender. Slightly fuzzy eyesight not blurred, which comes and goes. Have watery eyes when I wake in the morning. My Dr does not seem too worried. He felt the area above my forehead scalp area and thinks is just neuralgia. He's probable right. When I read other peoples accounts it seems I should be having intense head aches pain behind eyes, raised veins in temples for it to be GCA. I know it's probably just side effects of preds but there is always that little niggle. Could it be??
I am usually so upbeat. I have been coping quite well so far. I'm just feeling sorry for myself I know but sometimes I feel just a little down when I have to remind myself what I can and can't do. Spring is here. The patio needs steam cleaning plants need to go in. I'm so frustrated.
Thanks for reading my RANT OVER
Written by
Chrissy1953
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Know what you mean about the Pred head - still get it occasionally even though I'm off it now- well that's what I blame anyway!
Looking back at your posts, I see you didn't have a very good start when your doctor reduced you too quickly and you had to return to original dose, don't think that helps anyone - physically or mentally!
Must admit I would be a bit concerned about a couple of your "head" occurrences.
Don't think your watery eyes are particularly concerning, have you had them checked recently? A test might explain the fuzziness.
I didn't have raised veins nor intense headaches, but I certainly had the neuralgia type pain all over my head.
Have your bloods been tested since this began, if not suggest you request a test. As you say, it could be something else, and we do all tend to think it's GCA, when it's not.
Just to put your own mind at rest, monitor your symptoms, request a blood test, and if things get any worse then seek further medical advice.
I think we all get frustrated by what we can't do compared to prePMR, but there isn't any point really. You have to concentrate on what you can do, enjoy it, and say the rest will have to wait until I can. Or if it can't wait, then someone else will have to do it.
I have had regular blood tests.The last ESR was down to normal reading. Dr pre-arranges my blood tests at hospital for when I next need one which I will take advantage of next week.
I am down to 10mg pred as from Monday although symptoms were happening before and not any worse since then. I will keep a diary for next Dr appointment. I am lucky with him. He has been so open and obliging with my requests, but if bloods tests are normal and he thinks it's not GCA !!
I get just a bit confused over this PMRGCA . There as so many symptoms that could be compared to this illness. Its hard to decide what is and isn't .
I have a brilliant hubby and family, even my 4 year old grandson knows what Nanna's limitations are. But your right I need to take it more in my stride.
I'll also try not to let my family starve when I forget to feed them
You sound very similar to me and the cognitive changes bothered me as much if not more than the pain at times. Like I just can't get out of my own way. You have my understanding 💙
If the inflammation is under control your bloods should be normal- but that doesn't mean you don't still have GCA or PMR. Some doctors don't seem to get that- not sure why, other than they don't understand the illness!
If you have symptoms that you're not sure about, it might be wise not to reduce next week until things are sorted. If they are GCA related the last thing you want to do is reduce.
Totally agree that there are so many things that might or might not be GCA, and that makes it difficult for us and doctors to be 100% sure - but, if in doubt, get it checked!
I had a wonderful comment to share but rats it got lost in the clouds.. If it ever returns I promise to share it .. it was a doosy.. wished I could remember it..
You do know don't you that the oven and the freezer are PMR enemies, and when they join forces it's War! Have a battalion of baked beans at the ready! 👍
Well possibly you would have severe headaches - but everything starts small. Even GCA. Like DL - I'd keep notes because it isn't impossible.
And some people don't get the headaches - it is the presenting complaint (i.e. why they go to the doctor) in about 17% of patients if I remember rightly although it eventually appears at some point in about 40%.
I have to say - I lose interest in any meal that I can't do in the half hour before eating but we are just 2 adults (for whom I frequently have to prepare 2 dishes, but that's another story). Once every few weeks we have roast chicken as OH likes it (me? I can take it or leave it) and at least he has realised that if he's to get his chicken it has to be in by 6.30 and comes to ask. Gas is so easy to get wrong - I'm all electric (not by choice though, loved my gas hob) and the temperature is writ large on the front of the oven!! It also does microwave too so cooking a roast or jacket potatoes can be speeded up and you can't tell!
I have had GCA for 19 months now and last September had managed to get the pred down to 8. Then of course I was told to go down to 5 but at 7.5 developed a sore head and tingly scalp. So I started the long ladder back up but the symptoms did not change. My GP did not think they were GCA symptoms .for a while and left it to me to decide. I did not have a hospital appointment for five months so I continued upwards and eventually reached 40mg with no change. By this time I was very stressed, completely fugged up and slept every daytime but not at night! I went back to a different GP who told me that my blood sugar had rocketed and I had to reduce the pred immediately. I then had an appointment with a brain consultant re a small anomaly on my brain who also told me to reduce the steroids immediately. I am now down to 30mg plus a higher dose of myconphenolate. I go to see the hospital doctor on Friday and await his decision. Apparently he wants to increase the myconphenolate and decrease the steroids. What the tingly scalp and soreness is will have to see. I hope to get my body back soon. I have a terrible memory now .and have turned into a grumpy person. By the way the glaucoma is much worse as well now. Good luck with your problems.
Thanks ladies for all your comments. Interestingly I have just got to page 91 on Kate Gilbert's 2nd edition. Effects on eyes. I am wondering if that is whats happening to my eyes. I have just come back from aqua gym and all that jumping about did not make my head pain any worse. But then sometimes it's not there at all. Just a very red face.😠😠 PMR PRO. I taking hubby out for lunch tomorrow after my Dexa scan. At least he'll get one good meal this week.😅
What a good idea - it's our go-to as well! He loves Wienerschnitzel, I can't eat the coating (wheat allergy) and refuse to go to the effort for one so he gets it at one of the restaurants in the village. Have a brilliant pizzeria too,,,
4 weeks into this very odd condition and I can echo every single word you have said Chrissie1953! You are not alone. My GP will speak to me on the phone tomorrow about my jaw ache/temple pressure/throat-grip symptoms. I work with eyes, when I am at work (not atm). Watery eyes are often dry eyes - (which I have too and needs to be taken seriously) you need LOTS of nice preservative free eye drops (GP on prescription or pharmacist - the capsules are good ) and a wheaty bag applied several times a day (over a clean tissue) with gentle warmth. Keep blinking - especially if using a tablet or computer. Of course, as DorsetLady said you must also have a hospital eye check where they test if your tear duct is blocked or other problems and will prescribe the correct treatment or eye drops for you.
This forum is marvellous for supporting and informing us all. What a lot of common sense we get from PMRpro and DorsetLady and others. I now start each morning (11.30 earliest) listing what I do NOT have but friends DO have (MS, ovarian cancer, car accident etc etc (although I nearly had the car accident yesterday - twice!) I think it helps me come to terms with things. Six weeks ago I was 67 going on 50 and today I feel 67 going on 100 .... hey ho - as I said before, life is what happens when you are busy making other plans.
I sympathise. After many burnt meals, pans, smoked out kitchen I decided to invest in a slow cooker. The other day I put a whole chicken in (onion underneath, spices on top and garlic wedged in various places, yummy) and switched it on. Or so I thought. I had plugged in and switched on the iron. Not sure how long it would have taken me to iron the chicken to my satisfaction. Eventually ate at 9 o'clock 😳 Keep smiling it can only get better. Cc 🤗😜🤗
Rants allowed here (unless someone tells me otherwise?!). Maybe better to forget how to cook the chicken but dutifully collect the grand-kids, than the other way around? At least you didn't put the kids in the oven and try to collect a chicken from school - now that would be Brain Fog on a surreal scale!
On a serious note, it's natural to feel fed-up with PMR (not to mention GCA). I can well-relate, it knocks the stuffing out of you (excuse the culinary metaphor). Brain Fog is a well-known symptom, and compounded by the effects of the Preds.
Main thing is that you seem to have reliable and trusted medical advice - as well as the support from all here. Yes, PMR gives you a kicking, but you seem to have a great sense of irony. Try to keep smiling along the way.
Now, where's my dinner of freshly caught, battered, fried Haddock and oven chips? Ahh, yes, in the wardrobe - just like last week ;-D
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Only had to do that, hubby does everything else !
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