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I have become way more tired, I find it really difficult to get out of bed.

Posted , 4 users are following.

jill8899
jill8899

i am 57, have had a lot of major stress over the last 3 or so years, I take Plaquenil twice a day and now the young VERY disinterested young man at our local hospital wants me to stop taking it. It worries me, given my extreme tiredness and I think some form of burnout. There is only 1 private specialist here and of course she charges a lot of money to see her. The tiredness is really getting me down and being unable to get out of bed because I am so sleepy is really frustrating. Has anyone else experienced, with the oncoming of age an increase in age?

1 like, 26 replies

26 Replies

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  • sally83545
    sally83545 jill8899

    Posted

    Jill,

    I don't know if you have had your sleep study yet but I suggest taking pajamas that button down the front. I was put on a CPAP machine as the result of my study. I went in for snoring and fatigue. The machine forces moist air into the the airways by way of a mask so there is no snoring or choking etc.  I started sleeping better and feeling more rested immediately (No drugs no side effects).  Please don't underestimate the affects of the stress you are under on your health I take an antidepressant everyday and was taking something for anxiety as needed when my kids were still at home. I do feel good health comes with focus on all our needs. Feel better,

    Sally

  • christine26761
    christine26761 jill8899

    Posted

    Agree with Sally..Jill...I had the sleep study too..some 18 years ago, you definitely need button up Pj's wow! It showed just how many times I woke through the night and just didn't know ...It shocked me..no wonder I was sooo exhausted everyday..once I got a CPAP machine of my own the results were just amazing...we desperately need sleep to handle the pain we suffer from....I don't need it now ....who knows why...I used it for years though..be blessed..rolleyes) xxx
    • jill8899
      jill8899 christine26761

      Posted

      Hello Christine and Sally, I go and see my Dr again next week on Friday. I feel I am going to have to go private. The waiting list in the public is 2 years. Yes that's right. Where I live there is also a large indigenous population who need specialist care a lot so it pushes the list up.Hence the wait. I am reducing my steroids now and I can feel the draining tiredness lurking in the background. I have taken to setting my alarm on weekdays so I can get going early. 

      My eldest daughter is Autistic with mental health issues and my youngest daughter has Asperger's syndrome. So stress accompanies me every day. Plus for a long time I was my Mums full time carer. Now she is in a home and has had a number of falls and cancer. I wonder if most of this huge flare is burnout. All I am doing is trying to get better and feel well.

      i am so grateful for this discussion ladies. Thanks so much.

    • christine26761
      christine26761 jill8899

      Posted

      Wow!! 2 years is such a long time...can't the doctor put you on top of the list, .what country do you live in?   I bet you are starting to lack energy coming down of the steroids, it is sooo obvious when I'm on steroids..I am like a possum caught in the headlights of a car!!!..when I'm off them I'm back to my tired self again  ...if only there was a miracle med for all our woes..wouldn't that be great...be blessed Jill, really hope things start to turn for the better for you really soon..be blessed..:-) xxxx
    • lily65668
      lily65668 christine26761

      Posted

      I suspect I can answer that one, Christine. Jill will be in the UK - the wonderful "Old Country", under the loving care of the NHS!

      That being said, it's hard getting doctors to take Sjogren's seriously (or even diagnose it) in most countries. I suffered from a whole ragbag of apparently unrelated symptoms for nearly 10 years before I got a diagnosis. Saw dentists, ophthalmologist, rheumatologist, dermatologist etc. before my GP finally diagnosed it with a blood test for anti-salivary gland antibodies. To be fair, I'm a former nurse and I didn't know what it was either!

      Jill - I'm sure you're right about your circumstances making this worse, though I have to say I'm uneasy about the concept of burn-out. I never had anything like the amount of problems you have, but there was a definite correlation between my Sjogren's and my Mum's dementia. (I was an only child, living 200 miles away from her.) In fact, my very first, and mysterious, symptoms appeared just about the time she started showing the first signs of dementia, in 1995. The next 11 years, when I was coping with all this on a cross-Channel basis, constantly losing jobs because of having to drop everything and run home etc., was the worst time for my symptoms, which raged during all that period. Mum died at the end of 2006 and I started going into remission in 2008. Says a lot, I think.

      Don't know what to suggest. I know there's very little help available in the UK for adults on the autistic spectrum. You are at least lucky that your mum is in a home. I couldn't even get a diagnosis of dementia for my mum, much less any care. The only thing I know is that my symptoms were always more manageable when I felt that I - as opposed to my rogue immune system - was in charge. To that end, I'd suggest adopting any diet or lifestyle that gives you a feeling of being in the driving seat.

      Like Christine, I hope you can find at least some of the support you so badly need.

       

    • christine26761
      christine26761 lily65668

      Posted

      Thanks Lily...it's just awful how long we have to wait for a diagnoses...I was diagnosed with Sjogrens first then 2 years later Fibro...but like all of us symptoms are with us fir years first...if only there was a easy and quick test..mine was 22 years ago niw and there still doesn't seem to be a quick test that can diagnose you earlier...it was those years when I had such a depression because I just didn't know what the pain etc was from..no wonder we get depressed, I really feel fir these young ones who have it...

      it's usually always a trauma or shock to your system that starts it as was mine....I thought Jill was from another country as she mention the indigenous getting for appointments first??? Have a lovely day Lily.rolleyes) xx. Agree totally with a changed duet...I did it I wentPakeo...soo good..wortha googlewink

    • jill8899
      jill8899 christine26761

      Posted

      I actually live in Australia, at the top in Darwin. It is tropical and right now we are in the middle of our Wet season. Monsoon and cyclone time. There is nothing here for Autistic adults who look "normal" and even less for someone like me. There is one private Rheumatologist who feels free to charge like a wounded bull or the occasionally good one at our only public and therefore treating hospital. 

      Pin the Dry season when the humidity lifts my head feels ok but my bones ache, now it is terribly humid I am exhausted.

      i downloaded a book yesterday that was a more reasonable price on iTunes so will check it out today.

    • christine26761
      christine26761 jill8899

      Posted

      Hiya Jill...really thought your were in Oz, when you mentioned the indigenous  etc...yes most specialist charge heaps and we only get soo much back from Medicare...usually there are specialists attached to a public hospitals...I live in Tasnania..can't complain about the system here, but I did used to live in Sydney and those humid days were awful on the Fibro..it's colder  here, but that's ok, it's clean and fresh...can get quite hot in summer..lovely in spring...never muggy and that humidity of Sydney is not missed at all.....air conditioning takes care if the cold though, inside anyway..

      hit water bottles are awesome..plenty of them...I have a great nights sleep, so my days are very copeable am on Amitriptiline..only 25 mg at night one a day...works well for me..hope you get some relief soon Jill, be blessed..:-) xxxx. Enjoy your ebook...it's awsome stuff for sure...

    • lily65668
      lily65668 jill8899

      Posted

      Sorry I assumed you were in the UK, Jill! (I don't live there either.) It was the reference to long waiting lists that did it. That being said, I don't think Sjogren's gets identified or diagnosed very quickly wherever you are in the world. And if it's any consolation, in the French-speaking world (except for Quebec) autism is deemed to be a childhood condition that automatically clears up at the age of 20!
    • christine26761
      christine26761 lily65668

      Posted

      O, my goodness, Autism cleared up by the age of 20...wow!! I never, and their the really educated doctors and researchers..mmm..so glad I don't live there..where are you Lily..in France?...I know quite a few people with Autism and Aspergers especially, but I really don't know too much about their condition...but it was very hard on the families I new who cared for them...it's very sad..to deny it actually exists...have a great day..be blessed...:-) xx

      actyally a friend of mine's son with Aspergers has just  finished  uni...wow!!! a brilliant memory...

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