I’m fairly new to PMR . I’m find this site very helpfull. I seem to be getting really bad brain fog with the prednisone. Do others hv this problem? . So nice pain is reduced. Still get hip and shoulder pain in left hand side. Find it hard some friends don’t understand what you’re going through. Just think she’s got some else!! My mum had PMR so apparently that makes me prefixed to it. I’m a very active 63 year old that’s determined not to stop me being me. But when friends put you done oh you’ve got something else is very frustrating as I really don’t want this! I enjoy playy it img golf but have to sleep after. I’m not that person which makes me feel very depressed.. my kids understand and are supportive. Husband quite good too. But when someone thinks oh it’s anothing thing it upsets me.
newbie: I’m fairly new to PMR . I’m find this site... - PMRGCAuk
newbie
You are VERY new to PMR-only just got on the bus, as it were.I'm 4+ years into my journey and on low doses of Pred but still get brain fog (or perhaps in my case it's old age). It happened to me yesterday during a conversation with my Grandson's fiancée. I was going great guns when I got stuck on a word and came to an abrupt stop. I just said, "Give me a minute - brain fog!" and it came to me eventually but it is kind of embarrassing. Thankfully, there are few people in my life that don't understand after all this time.
Explaining PMR to others when you're trying to get to grips with it all yourself is mind-boggling but have a good look at FAQs and under TOPICS and Related Posts and you will become educated 😆. I'm still learning!
This link takes you to a post and replies that may help you as well as making you smile 😉.
healthunlocked.com/pmrgcauk...
Thank you! Helps xx
Hi and welcome
Afraid brain fog can be a side effect of Pred, and also a component of your illness….so a bit of a double whammy sometimes.
…and yes it is upsetting when others dismiss illness, but unfortunately that’s very often in the case in so-called invisible illness…
Maybe have a look through the FAQs if you haven’t already, they are done alphabetically - so just have a browse…linked here
healthunlocked.com/pmrgcauk...
and keep up the golf, but you msy need to pace yourself more. - there is a link in this general info post -
healthunlocked.com/pmrgcauk...
..and a plea, can you please put a bit more info on your profile - thanks -
Hi and welcome.
Brain fog can be the pred - but believe me, it can happen with "just" PMR so it may be either - or both, It will probably improve though - just not tomorrow.
Ignore them - ask them where they got their medical qualifications! Dispense with them altogether if they really upset you, you don't need that. At least your children accept it - often they struggle with coping with the idea mum (or dad) aren't invincible.
In a year you will look back and realise just how far you have come - I promise.
Thank you ! I thinkThey’re young and don’t understand what I’m struggling with. Hey ho. Trying to explain to my husband. But might try councilling . .
There is a link to the DVD in the FAQs I think - short enough to get someone to watch explaining what PMR and GCA do to us. And Kate Gilbert's book,
I had a few sessions of counselling via my work and I found it very helpful in helping me reframe my perspective of PMR
Def brain fog! My daughters sort of understand…but still get irritated! Of course!
Don't know if it counted as "brain fog" but it worked in my favour back when I was starting the PMR/pred journey. I was able to be disqualified from jury duty as I claimed (with doctor's support) that I would not have good judgement (not to mention I'd probably fall asleep during the proceedings but I don't think I mentioned that)! Certainly I was not aware of this stage being particularly onerous, but I was physically feeling so much better I was pretty happy at the time. The only thing my husband ever said was I was like the Energizer bunny in those early days.
With regard to pacing, I completely relate to what you said about needing a nap right after playing golf. For quite a long time I found even getting together with friends for a coffee would leave me completely exhausted afterwards, and I guess it really was partially physical and partially just the effort of socializing. It does get better but pacing remains an issue to some extent even today (been on pred several years, mostly low dose).
It can be hard to convince friends who think they know you well that in ways that count you are still the same person, but there are some things that have changed, possibly for the longterm if not permanantly. So much easier if you have a broken leg or something, but invisible diseases all seem to elicit some denial from others, sometimes even from ourselves. PMR is just as valid an ailment as a visible physical injury and is no more responsive to well-meaning (but non-PMR suffering) friends' advice as would be amateur instruction about how to manage your broken leg or your case of pneumonia!
As mentioned by PMRpro-link to DVD -
healthunlocked.com/pmrgcauk...
My intro post mentions Kate’s book -available on Amazon
Hi Lily,I’m just going to add, don’t let negative energy take up residence in your mind. Stress plays a big role in how well you cope with PMR/GCA.
Welcome to this site, you’ll find lots of positive support here. fm
So true
Thank goodness your daughters understand. I'm sorry your friends are like that, wait until they get something.My daughter has returned from Hong Kong after nearly 4 years and one of the things she asked me when we talking about going somewhere was "do you have enough spoons for that"
Gobsmacked as I have never talked about things in that way as since Oct 2020 I haven't seen her due to strict Covid rules there so just given her what was necessary. It seems she was very clued up on the spoons theory which has been really helpful. Maybe your friends should educate themselves on that at least.
Things will get better, it's just not a quick process, but in time you will look back and see that. I was all over the place at first but have relaxed into doing what my body dictates now, napping when I want and taking things in bite sized pieces re the rest.
You couldn't find a better place than here to feel listened to and supported.
Is that a permanent return? Sharp young lady that!
Yes! Funny as I have now realised how all my friends rang me regularly (more than we usually do) since my diagnosis and now she's back we're back to our usual every now and again! Ha!
Yes she does get it regardless of how well I look. Plus she has seen me regularly not able to walk due to muscle issues and how I go off for regular naps during the day. I always tell her what I think I can and can't do.
They've just got into their house at the weekend which they'd rented out. So I also have my house back .
Yes, I forget things all the time, particularly words and often say the wrong one, which at least gives everyone a laugh. The ability to think things through was shocking on high doses of pred, but that does seem to have improved as the dose has come down. So don't worry: there's every chance it will improve.
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