Fatigue - in 13 different guises

[PMRpro]

A friend posted this over on her home forum today (LupusUK if anyone is interested).

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

Now I know it says Sjogrens but that doesn't matter. The fatigue of autoimmune disease doesn't vary THAT much but Sjogren's is said to be the worst. I don't know, there are degrees of everything and although I suffer from dry eyes there is little indication I have anything more than that but the No 3 Sudden fatigue - I get that. Suddenly, out of thin air, I feel nauseated and just want to die in a corner. Next morning I'm fine.

So - read, mark, learn and inwardly digest. Maybe it will help you identify why when you feel rubbish.

[Brixhamhampster]

Wow pmrpro it really does cover so much of what I think most of us feel. Especially not really saying anything when people ask how I am. I have no outward signs of illness so hard to convince anyone I am even ill. My two best friends are the only ones I discuss how I feel with and they even let me have an hours sleep after they come for lunch and do the washing up for me! My husband just knows and often takes over a job when he sees I am about to fade. Thanks for the link I found it strangely confirming (if that is the right word)

[kingharold11 in reply to Brixhamhampster]

Had a bad day today in fact had a bad week or two went shopping with my husband this morning cooked some dinner then had to collapse on the settee this afternoon went for a short walk yesterday which is probably why I feel so rubbish today went to the chemist for some pills to get rid of the congestion in my head probably sinusitis girl at the back of the counter came out with the what medication are you on (she looks about 12} I can't sell you that stuff without sayso from the pharmacist in front of about 10 people I felt about 2 inch tall lost it I'm afraid muttered about having an inquisition every time I need to buy something not on prescription its all true and walked out the point is I can go to Morrisons which is about 3 miles away and get this stuff off the shelf (sudafed) sorry for the rant

[PMRpro Ambassador in reply to kingharold11]

I'd complain to the pharmacist/manager. That is NOT patient confidentiality and she needs training. "I'll just have to check this with the pharmacist" was all she had to say.

[jinasc in reply to kingharold11]

Please, although you had a bad experience, you really must check every bit of medication you are going to buy or have been prescribed with a Pharmacist for compatibility with what you are taking and that includes homeopathic remedies.

From past experience, my pharmacist rang my GP and told him that what he had prescribed was a no-no and got him to prescribe another one.

Golden Rule, check with your Pharmacist.

[Keats1 in reply to kingharold11]

I had a similar experience. Caught a horrible ENT infection. I can’t remember the last time I had one. At least 15years but the Doc explained I am now immuno suppressed 😱 had one night of no sleep at all. Sent my husband to Morrisin’s pharmacy for night nurse to ensure I would sleep. The pharmacist asked about other meds and he was told they could not sell it to me.

[Daisy246 in reply to Brixhamhampster]

I’ve just spent a day with my 91 year old Dad and sister and husband having not seen them for almost 4 months due to lockdown.

They sort of know that there’s something wrong with me, but today because, I don’t want to worry anyone I’ve pushed myself and reassured my Dad that there’s nothing wrong with me Just to keep them all happy and not to worry!

[DorsetLady PMRGCAuk volunteer]

Hi,

So very true!

[SheffieldJane]

Thanks for sharing this. I am having a crawling from bed to sofa day as I read it. No real reason for it but I know tomorrow I will be fit to collect Theo from Nursery, perhaps feed the ducks with him in the park and play games with him at home involving newly painted train tracks and roads ( by me) on hardboard left over from repairing a drawer ( me ) and various engines and cars. While mummy gets on with caring for his tiny baby brother and hopefully rests.

I wonder if we can get anticipatory tiredness? Forcing rest before exertion?

[polkadotcom]

Yep! Can relate to this word for word!

[Marie1479]

Another great article PMRpro. You hit the nail on the head with "Suddenly, out of thin air, I feel nauseated and just want to die in a corner. Next morning i'm fine." This is my life these days. That damn flu feeling takes over me and just crippples me. There are days I feel like life is just passing on by. I am counting the days, hours, mins until summer recess. Working full time has been getting more challenging these days. Thankfully spring has sprung here in NY which helps a whole lot with keeping positive and keeping depression at bay. My Brother and his family live in the UK and my plan (before PMR) was to cross the pond this summer but I just don't think I could handle that just yet. Something to look forward to someday....

[PMRpro Ambassador in reply to Marie1479]

Why not? I travelled with PMR before pred and still do. Now though I cheat - and request airport assistance which makes a BIG difference when you don't have to walk at all or haul luggage about.

Probably won't help if you want to fly into Heathrow as I gather they are useless at it but IMHO you have to be slightly out of your mind to WANT to fly into Heathrow anyway...

[karools16 in reply to PMRpro]

I have to disagree, PMRpro. I always fly from Heathrow to S.Africa.In MARCH 2013,I requested assistance, as I cracked a rib, on holiday, getting out of the pool! They were fantastic.! They were waiting for me with a wheelchair, zoomed in and out of passport control, at 7am, and the porter took me to the bus station, where I was taking my coach, and being met by a friend. High praise to them..gave porter fat tip..was worth it.

[PMRpro Ambassador in reply to karools16]

Pleased to hear someone they did work for - I will do anything to avoid H/R, hate it with a passion, but others have told me about not being met, being abandoned somewhere on the way to the next flight, missing the connection altogether.

Definitely worth assistance if you are heading for the USA and their immigration queues though!

[jinasc]

Just in case anyone missed this eprints.whiterose.ac.uk/852...

'I suddenly felt aged' by Dr Helen Twohig GP and Associate Researcher, Keele University.

This is Part 1, the next part of the study is underway.

[Doralouise77]

Wow....number 3....is that what that is?....they make me terrified of leaving the house by myself, never know when it's going to hit....have lots of the other ones but they're not as scary....

Cheers

[PMRpro Ambassador in reply to Doralouise77]

If you get a lot of No3 - it's your body telling you you are asking too much of it! Nowadays I really only get them of an evening when I have been just carrying on a normal sort of activity load - forgetting I have PMR (yes, it does happen!).

Long before pred I remember being 2/3 of the way down a ski run and it hit. That other 1/3, really just a couple of hundred yards, felt like climbing Everest. It was my own fault - I'd done my 3 runs (it was early in the season) and thought "I feel good, one more..." It taught me a valuable lesson - and I stuck to my allocation of spoons after that!

butyoudontlooksick.com/arti...

[Doralouise77 in reply to PMRpro]

That sounds reasonable except I've only been asking my body to get out of bed though...hardly unreasonable I wouldn't think 😟

Cheers

[PMRpro Ambassador in reply to Doralouise77]

No - you're right. Maybe there is something else going on?

[Louisepenygraig in reply to PMRpro]

Number 3 is most likely to hit me when I decide I have enough energy to pop in to Tesco on my way home from doing something else. I'm doing OK and then suddenly my brain and body both give up and I have to stagger to the checkout. I feel quite stupid sometimes when I can't even work out which way to put tbe card in the card reader! I know what you mean about it stopping you doing things. It was my biggest worry when I flew to visit my daughter in the US recently but I had my husband with me and asked for wheelchair assistance at the airports and I was fine

[lesley2015]

Spot On PMRPro - worth printing out and showing to my sons, who really do not understand. But, lovely as they are, they wouldn't read it .. it they did, I doubt they would really understand.

Its similar to telling a depressed person to pull themselves together, a compete lack of understanding, lack of understanding of the feeling of Fatigue ... (which often has the depression intertwined within it) as being the same as tired.

Thanks for sharing

[ignatz]

I seem to be a no9....

"9. Fatigue that impairs concentration precludes thought, makes me too tired to talk, think or read. Fatigue robs me of memory and encloses me in a fog of cotton wool so thick I can't find my way out until the fog miraculously lifts. For me, brain fog goes hand-in-hand with other kinds of pernicious fatigue."

info.sjogrens.org/conquerin...

Many, many thanks for posting it up, PMPro!!

[Rimmy]

Yes - one of the very worst and most repetitive aspects of PMR/GCA has been the bl***dy fatigue - sorry I couldn't help the expletive - and the brain foginess is HORRID !! I used to pride myself at being 'sharp' and 'on the ball' but after more than 3 years that is becoming a 'pipe dream' or a 'bucket-list' wish. The occasional day I do feel 'sharper' it is literally like focusing an image or a sound and everything just 'clicks' back into place and seems almost 'normal'. Hasn't happened for a while now though and I'm wondering if it ever will again. It also appears I may not be able to fit the criteria for TCZ - even though I have been back on high dose Pred for months after 3 and a half years. Apparently to get it funded here on our PBS in OZ my new specialist says you have to have the raised ESR & CRP markers - mine have never been outrageously high although fluctuate within my context slightly with 'flares'. Now I just have to hope a PET scan I am having might support my case - but the criteria looks quite 'rigid' !! This MAKES me feel even more fatigued ...

[PMRpro Ambassador in reply to Rimmy]

The REALLY annoying thing about getting "permission" for tcz is that in almost all countries if the dx is RA you can have it - straight off the shelf, no hoops to jump through.

[Rimmy]

Yes it came as a surprise and my specialist seemed very irritated by the 'rules' here which she said are quite black and white and 'rigid' and interpreted not even by doctors but by office workers ticking the 'right' boxes - so it isn't looking very hopeful at the moment - even if the Pet scan confirms I have LVV

[PMRpro Ambassador in reply to Rimmy]

I don't mind so much when at least a committee of people who deal with patients has the say - and I think in the UK you can appeal. But my rheumy said it isn't unknown for doctors to just change the diagnosis to inflammatory arthritis ...

[PMRpro Ambassador]

You seem to have forgotten I don't LIVE in the UK. So your sarcasm is wasted.

I would be anti-pred for a spondyloarthropathy

[Anonnomus]

First link above does not work anymore. Replace with this: sjogrens.org/blog/2019/13-t...

[PMRpro Ambassador in reply to Anonnomus]

Done - thank you!