Fatigue - in 13 different guises

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

info.sjogrens.org/conquerin...

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.

17 Replies

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  • 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)

  • 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

  • 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.

  • 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.

  • Hi,

    So very true!

  • 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?

  • Yep! Can relate to this word for word!

  • 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....

  • 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...

  • 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.

  • 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!

  • 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.

  • 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

  • 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...

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

    Cheers

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

  • 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

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