Update

[ChrisinNam]

Just had a shouting match (well, raised voices) with my doctor. Because of what happened when I went to the dentist, and when I went to the audiologist yesterday, when I had to enlist the help of complete strangers to get from the far end of the car park into the hospital. Doctor says there MUST be something going on if I'm almost collapsing, that isn't PMR. But she has agreed to sign an application form for a blue disabled card. And she's contacting the hospital to have more investigations done. She said it can't be the PMR because my bloods were all OK. I said that was after taking Pred, and she insisted that wasn't the issue. Does anyone have any help?

[DorsetLady PMRGCAuk volunteer]

Doctor assuming a lot- of course it could be PMR. But at least she’s helping with getting BB - and doing doing something about more tests..but I’m sure many on here would still go for PMR being the main culprit - but there may be other factors- so best to find out.

[piglette]

I kept fainting last year. I assumed it was the adrenal glands playing up but the medical profession decided it wasn’t and have been doing tests ever since, spread out, that is why it has taken so long. I would love to know what happens with you, do let me know.

[PMRpro Ambassador]

I have had episodes where I just couldn't move - and they were always after doing too much. She can't say it ISN'T PMR, like other autoimmune illnesses PMR can cause a very acute, hitting a solid brick wall sortof fatigue. It is mentioned in the Sjoegrens fatigue post:

sjogrens.org/blog/2019/13-t...

[Nightingales]

I have PMR and I have often had episodes of fatigue even when my blood tests were back to normal. One time I did my shopping but couldn’t stand in the queue to check out and just left it. I have been in town and really thought I couldn’t make it back to my car. One time picking blackberries I had to lie down in a field! The fatigue has improved just lately but I am still on 12.5 after a bad flare.

[PMRpro Ambassador in reply to Nightingales]

One friend reckoned she had attacks where she just wanted to lie down under the racks of clothes in Next!

[MrsNails]

ChrisinNam - l have had episodes of overwhelming fatigue - l’ve ended up sitting in a window display! There is nothing you can do but stop, rest & wait for it to pass. You have been overwhelmed following the dentist episode, l forget what dose you are on but maybe you need to go up a bit.

I think you need to take some time to recover & regroup.

In the past when l’ve had episodes of it, l clear my calendar & do only as much as l want or need to do. I appreciate you live alone so it’s not so easy, l don’t think GP’s have any concept of this issue.

During Lockdown l had an episode like this, almost collapsing in the garden. I spoke to a GP & he gave me three options, one to go down to see him (l was impressed) two, hang in there or three, increase the Pred…. Which is what l plumped for.

I wrote to my Consultant explaining what had happened & he thought it was the external effects of Lockdown/Covid (this was June 2020) so he actually put my Pred up & increased my Methotrexate….

We need between 7.5mg - 10mg Prednisolone a day to replace our natural cortisol as well as what we need to deal with our PMR so if you have to face an additional stressful situation our body’s simply can’t cope, that’s why we need extra Pred for the Dentist or Surgery no matter how minor as no one knows how you will react.

Please try & rest as much as you can & let us know what dose you are currently on.

Kind Regards

MrsN

[ChrisinNam in reply to MrsNails]

I'm currently on 12.5 pred, Mrs Nails. Never thought to increase when going to the dentist, or the hospital on Tuesday, although of course a 25 mile drive is stressful. Really must try to bear that in mind in future. Up until last October, and even a month or two beyond, I was relatively capable. Not now, though.

[MrsNails in reply to ChrisinNam]

I really don’t like to recommend people to change their dose but you may benefit from 3days on 15mg then back to 12.5mg on Monday but get as much rest as you can, relax to try & recover. You should have had the increase anyway for the dentist….

Take Care 💐

MrsN