PMR/GCA/FIBRO

[Dream21]

I went shopping at the Bead Store and stopped at a second store. Later I had numbness around my face, blurry vision, and scattered thinking. Anyone else feel this way? I seem to get this when I do too much. Thanks.

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Morning Dream

That sounds quite disconcerting, have you seen your GP about it? It could be a TIA so really you should have it checked.

My friend had something very similar & it was a TIA no issues since but she was in a stressful situation at the time.

Take Care 💐

MrsN

Keep us updated.

[scats]

I find supermarkets especially disorientating. I thinks it's the florescent lights, but the constant movement of people doesn't help. I get both blurry vision and brain fog at these times and usually have to sit down. Can't help with the numbness, sorry.

[Soraya_PMR in reply to scats]

I agree supermarkets wipe me out. I avoid when possible in favour of my butcher/baker/veg shop in a traditional high street. Fresh air and daylight are preferable. I need a rest after either, but is it the unforgiving concrete floors in certain supermarkets that drain my legs of energy?

[scats in reply to Soraya_PMR]

I do agree about the smaller shops but there aren't many around here. I'm afraid I take the easy way out and get it delivered!

[Soraya_PMR in reply to scats]

Even better!

[pollymarierose in reply to scats]

It's a fantasy of mine to have my groceries delivered!

[scats in reply to pollymarierose]

Is it not possible where you are?

[pollymarierose in reply to scats]

I haven't shopped in weeks because it's too stressful now. I've discovered I am extremely sensitive and jumpy to loud sudden noises. I want to jump out of my skin! And this is coming from a person who can't even count on fingers and toes anymore how many concerts I've been too! I was just asking my husband if sensitivity to noise is another symptom to pmr?

[scats in reply to pollymarierose]

There is a sort of background noise in supermarkets and I'm sure that doesn't help. There are times when other peoples noise irritates it would be interesting to know.

Luckily shopping was never something I did for enjoyment so no great loss, I haven't been to town for years now.

[PMRpro Ambassador in reply to pollymarierose]

A lot of people have commented over the years about how they can't stand noise. Like scats I don't shop if I can help it - but small children being noisy in a restaurant is torture for me.

[Bronni in reply to PMRpro]

It’s tough disliking noise, when your OH is deaf! The tv, aaagh!

[PMRpro Ambassador in reply to Bronni]

Tell me about it - if I make the mistake of switching the living room TV on when he last used it in the early morning and not beating a hasty retreat with the remote it is awful! In bed in the mornings he uses wireless headphones - bliss! But once he comes through to dress, have breakfast etc he just turns the volume up on that TV.

But the most annoying thing is with Austrian TV (in particular): the TV is on so we can hear the programme sound comfortably but when ads come on they are WAY louder and he gets very antsy about that, grabs the remote and reduces the volume. By which time the programme is back on and I can't hear it!

But the x thousand euros spent on top-of-the-range digital hearing aids a few years ago has been worth every cent!!! They have saved my sanity for a few years more. Now he's seeking other irritants...

[Bronni in reply to PMRpro]

Too funny. I can relate to it all, especially when I can’t sleep and am trying to be quiet in the middle of the night and watch a bit of tv! Annoyingly, mine is being stubborn about the hearing aids, even though the entire family keep telling him to get them. He still has one ear that kinda works, but he makes sure I’m always on his deaf side, so he can’t hear me 😂. Same when hes driving and I’m screaming to watch out for that car/person. It’s terrifying!

[Blearyeyed in reply to PMRpro]

That's not just Austria , the UK too , I sit with the remote in my hand all the time I watch ( not just so I get to pick the programmes😋😁) but because of those swings in volume.

New films can be a nightmare to because they are recorded with Surround Dolby Sound , so speaking can be a whisper that you need to pump the volume to hear but then be prepared to slam a finger on the control to reduce it if some action or music pops in. It's like 4d !! You have to be in and control the action with your sound button.

It's also the reason that I cannot go to the cinema or theatre very often , unless my pain from all the different causes is well managed , as the surround sound and background noise mean I am wobbling like a jelly with a throbbing head when I try to leave. Good job they have started to make the credits more interesting , I'm always last out!!

[PMRpro Ambassador in reply to Blearyeyed]

Austrian is a lot worse than German or Swiss. Italian is just noisy anyway! You'd think with all the digital doojies they could make it smoother! Or is it aimed at us hearing while having a loo-break or making tea? UK TV is usually recorded for watching at a sensible time so I position the computer we use for that so the mouse is easy to get at and get my exercise jumping up to forward the recording! Have the 4min breaks on ITV down to a fine art, the 6+min ones on Drama need some practice And I can't watch it live - the ads drive me nuts!

[Blearyeyed in reply to PMRpro]

Ooh don't get me started on Digital TV !!

We have more breaks in signal now than we ever had before the change over, hot weather, a slight increase in wind , changes in air pressure and humidity and it's off!

The wonders and apparently more efficient world with new technology , Bah Humbug!!

[PMRpro Ambassador in reply to Blearyeyed]

Um, it was obvious to us that would happen, the nature of the signal means it has to be perfect, analogue is very forgiving. But like a lot of other things - lies to get people to accept an idea...

[Blearyeyed in reply to PMRpro]

Yes, And unless you live in bigger towns or cities you can forget about trying to watch anything on iPlayer , Amazon or Netflix without the stuttering if someone else in the house needs to use the internet ( or your annoying family start fiddling around on YouTube) because the Broadband speeds won't let you. 5G !!! We are lucky to have 1 and a1/2G held up by pencil and sticking plaster!😁😂😂😂

[PMRpro Ambassador in reply to Blearyeyed]

Yup - remember that in Durham, after we moved to the other end of the village it was hopeless. We bought a stick for the computer - but even that didn't work unless we had a cable so we could hang it in the window as the walls were so thick!!!!

Wasn't much better here at time - got sticks again which work all over Europe so that was OK. Then February last year we got fibre optic internet! Long wait - but it has been worth it

[PMRpro Ambassador]

I used to find that 2-3 hours after taking the pred, probably about the time it reached its peak in the blood, I would feel like that if I was out shopping: dizzy, wobbly legs and even an almost panic attack. A couple of times I left a shopping trolley in S'burys (other supermarkets are available) and had to get outside - the people around me felt threatening! Others have said something similar in the past.

If it was a one-off then MrsNails may well be right and it needs to be checked out - but if it happens more often in similar circumstances it is less likely to be a TIA (mini-stroke) but still worth speaking to your doctor about.

[Nuff1]

Could be a blood pressure spike because of stress/overdoing it a bit. Check BP.

[Grants148]

I have often experienced numbness accross my face,also rather forgetful at times,especially in tiring or stressful situations.Take care and try to pace yourself and not overdo things x.

[SheffieldJane]

It’s a timely reminder that you are still ill and must pace your activities carefully - even fun ones. Report it if it persists.

[Sho-Sho]

I get it shopping when I start feeling tired, blurry-eyed and wobbly.

Have to get home and rest.

[patriciawhite]

Best to mention it to your doctor .better safe than sorry then if it happens again they have notes that its not the first time , Hopfully its a one off .Have you had your eyes checked .

[Blearyeyed]

I have been suffering with the light and sound sensitivity , and the face numbness , and head pain for years before any of the GCA or PMR raised it's ugly head.

Sound particularly from behind making you disorientated or your head throb in the rear.

Face numbness from changes in the weather , the wind , even hair brushing !!

Light sensitivity has meant that I have looked like a burnt out rock star buying a pint of milk for nearly ten years.

Yes , I look like Dracula's more wobbly sister now at the supermarket , but the sunglasses , hat and scarf round the ears are a necessity to function not because I want to scare the natives.

Trouble is , as we progress , it can come from various causes.

It could be part of the PMR or GCA , and actually now for me it is , or they make the original nerve related issues worse.

It could, if it has only happened once as Mrs Nails and PMRPro say, and particularly caused disorientation , confusion and some loss of function , be a mild mini stroke this needs investigating .

It could be an increase in Preexisting Neuralgia because of the PMR and use of steroids .

I had both Bilateral Occipital Neuralgia and Trigeminal Neuralgia causing all my face and head pain numbness and facial stiffness for years , which has now been linked to Fibro and possibly another condition , separate to the GCA , but made worse by it .

It can also be a firm of severe migraine brought on by the environment you are in.

Migraines at the worst , particularly migraines that are part of the package of Fibro and GCA or PMR , can strike quickly , like a stroke , and cause similar symptoms to a stroke , even down to loss of key function and disorientation and palpitations.

They most important thing is it happened , and if you don't know the cause , you need to discuss it with your Specialist if you have one , or at least your GP.

Make an appointment , or with a Specialist you can phone a secretary , tell them what happened that you are concerned it could happen again and ask them for a phone back from either the specialist ( or the secretary with an appointment or instructions ) to discuss what you should do. Importantly , you also want this new episode noted in your medical records , so when you do go , you can ask whichever doctor to look it up on the computer to discuss it quicker.

I don't know if you are on any other medication apart from Pred , or have already been diagnosed with any other issues, but it is definitely something to be consulted about as you may need other tests or some form of prescription medication to prevent and improve this if it is migraine in nature.

Good luck , hope that helps , hugs , Bee xx

[Dream21 in reply to Blearyeyed]

My doctor did a brain scan. Everything was fine. It must be the result of the diseases. He does not seemed concerned because everything came back normal.

[Telian]

I do, have always had a numb face - had an Angiogram, was seen by Maxofillia and TIA with no issues apparent. This was prior to GCA and PMR and still get the numbness but it doesn’t phase the doctors! Noise in the supermarkets can be horrendous when on steroids - particularly when children scream - it’s a combination of noise and lights that makes me feel disorientated - more so when reducing. I wear my sunglasses most of the time even in low light when watching tv. Very soothing for the eyes. I wear them all year round when driving and with the car visor down - bit like The Blues Brothers I am!!

[Blearyeyed in reply to Telian]

We sound the same . Perhaps we should get together , buy ourselves some suits and trilbys and go and cause some mayhem!😋😁😂😂😂

[Telian]

I’m good at that - according to my OH!