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Is it normal to feel so tired you sleep for days

Posted , 4 users are following.

kate288a
kate288a

Hi

Im 33 and was diagnosed with ss, fm and rayndauds last May.

I was put on tablets and told by my rheumy that at least I didnt have lupus.

I have a terrible memory -I laugh it off but it is extremely frustrating. Not only do I forget names but I forget words, get some words muddled and completely forget what im saying half way through a sentence. I have no idea what to expect but google has helped go some degree.

My worst thing is that I hurt all the time and im so tired, some days I cant even move. Ive been known to sleep for 3 days solid! I have to make up other excuses not to go into work some weeksy as I simply cant function.

I work full time and struggle to cope every day.

ive now got a horrible red itchy rash on my shins and neck. I feel really low and isolated although ive got great family and friends but uts so hard to describe as most of my symptoms are invisible. Is it normal to feel so bad with these conditions? Sometimes I feel like im being a hypochondriac. I also h

Any advice on how to deal with any or all of this would be lovely.

​Thank you

0 likes, 7 replies

7 Replies

  • charles79548
    charles79548 kate288a

    Posted

    Yes Kate when I was first diagnosed in 2009 I felt terrible all the time like i had the flu. That was one the first symtom I had before the dry mouth, no salavia, loss of smell, loss of taste. All of that lasted for about 2 1/2 years and then I got better. I was going to a Holistic Doctor who was treating me with several supplements. Last year in May I got to were I could'nt get a deep breath and I had trouble breathing. I have been to three Pulmonalogist taken breathing test xrays had ct scans, but non of them can help me. I am going to the Holistic Doctor again and he is treating me with supplements. I think I will make an appoitment and see a new Rhumetoligist, as my other Rhumetoligist has moved to another state. I hope you get to feeling better, I feel terrible from the time i wake up till I go to bed.

       

    • kate288a
      kate288a charles79548

      Posted

      Thank you Charles. I feel mildly better knowing im not making these things out to be worse than they are. Because people cant see it, they dont understand. I have dry mouth and dry eyes but they are manageable....or at least not bad enough that I cant ignore them. My eyes get really sore and painful, particularly after working on a pc all day and man do they burn after crying! 

      why does everything thats good or beneficial so expensive? I have to pay for chiro to try and keep my fibromyalgia symptoms at a minimum but I was involved in an rta on Friday evening which has made everything worse. Im now trying morphine patches to see if it makes any difference. 

      Im worrying about keeping my job as ive had to take a lot of absence and they dont know how long they can continue to pay me statutory sick pay.

      we're told we have to be employed but then the empolyer wants to get rid because you arent there to do your job 100% because of chronic illness.

      its all very frustrating!

       

  • christina57136
    christina57136 kate288a

    Posted

    Hi Kate I was given the SS diagnoses 4 months ago , I have been off work since jan ,

    what meds have you been put on I was put on hydrocoquinne that worked brilliant for me last august when they found lupus antibodies in my blood ,but I started to think I was better the tingling and pain in my hands and feet went in fact the pain went altogether then in December I started to feel breathless and in well I also have raynaulds , so I suppose the cold weather came into the mix , I went yo GP who sent me to rummy who took me off all meds I slept straight for a month all of February is a blurr .i would crawl downstairs to let out the dogs I now have someone that walks them for me from communitie support .i have had lung function test ,ct ,ECG ,bloods ,am having echocardiogram on Wednesday ,I joined this web site and health unlocked , which I found to be a great help , have you been told you have cronic fatigue and fibro mailger , my consultant has told me they go hand in hand , I spent a fortnight crying 2 weeks ago felt like you so alone , people look at you as if your making it up which makes you feel worse ,I have been put on a antidepressant whic I did not want but it has taken away the nueralgia pain in my hands which is what convinced me to take it , I live alone as children moved away for work ,have you anyone family if not contact social services they can help you ,I feel better in a way because I have given in a bit and am concentrating on getting better and not trying to work as well I think I might have made things far worse for my self ,if I had carried on the way I was going the consultant told me straight in march ,I was not well enough for work and to rest and take things gently ,these auto immunise issues are arwful thing to deal with,go back to your GP and ask for some more help you owe it to yourself .take care Christina 

    • kate288a
      kate288a christina57136

      Posted

      Hi Christina

      thank you for confirming im not a hypochondriac smile

      Im on immunosuppressive hydroxychloriquine and duloxetine for nerve pain. I also take tramadol or dihydracodeine for the pain when I need to..plus omeprazole and fibogel every day. I was used to taking strong painkillers before as i had a disc remived fro  my back when i was 27 and this causes me pain all day every day.

      I was then diagnosed with ss (blood test confirmed) , fibromyalgia and raynauds phenomenon. I thought starting the meds would have some physical benefits but if anything I feel worse.

      my tiredness has fot worse and get really bad bouts of extreme tiredness if ive been stressed or upset. It lasts for days. Its so nice to know I am 'normal' but its so deprezsing isnt it?!

      im really lucky with my family and friends but they offer advice that is useless...theyre tryi g ti help but it just makes me feel worse as they tell me to stop having my friday night downthe pub...which is literally on the corner.

      I feel like my life is disintegrating. I dont do anything physical as I end up hurting myself and have to pay for chiropractic treatment and I cant walk very far due to my previous surgery. But to look at I look perfectly healthy. Its soooo frustrating. 

      Another worry is whether my employer will carry on paying me for my sickness..how will I afford my mortgage, bills and other debts? 

      im not of much use advice wise just yet, but if you need an ear to bend, please let me know!

      all the best

      Kate

    • christina57136
      christina57136 kate288a

      Posted

      Hi Kate sorry took so long to reply ,I have had a really good day today ,had almost no pain ,and got all my paperwork sorted , had my daughter home from uni ,for 2 weeks so was made to completely rest ,also my son was home for Easter so between the 2of them my house and garden all been sorted ,they have also got social services involved to help me with money and blue badge etc , I am now curled up on the sofa with a beagle called Murphy waiting for game of thrones to start , :-)  .i hope you feel better , the other things I forgot to mention is I am waiting on a lip biopsy and eye specialist as hydro has effected my eyes a bit he thinks , and he is sending me to pain clinic but there is a waiting list of 6 months but ha oh ,I feel better when the sun is shining ,didn't need hot water bottles today ,so that should be in the autumn just as I am really starting to suffer again with the cold weather ,take care and remember your not imagining your condition 3 years ago I assailed down the church tower for charity ,riding a bike 15 mile a day ,and flying power kites 3 nights a week and all day on a Sunday ,this has happened to me because a dentist forgot to give antibiotics after a root filling ,but I can't sue coz apparently I have a prediosition to autoimmune conditions because my mother had R A. :-( x
    • kate288a
      kate288a christina57136

      Posted

      Thwts really good. I hope I can find a way to be pain free some days, but after feeling like it for years, it seems unlikely. 

      its so good that your family have made you rest. Keep it up and hopefully you'll start to be able to enjoy the good days a bit more!

      I usex to be rrally healthy too and go running every day but my back surgery ruined that. I like doing weights now but am off them until my chiro tells me otherwise. Had an rta on friday so its set me back a lot. Nevermind. I know I can come here and have a rant with people who understand.

      im going to concentrate on how I go forward with my job as I feel I have no work/balance at the moment,  but I cant afford tomtake a paycut or lose my job. It all feels doom and gloom sometimes.

      am pleased youve had a good day. Hope the same ayain fif tomorrow smile x

       

  • mandy23924
    mandy23924 kate288a

    Posted

    I am always so tired.  I'm loosing my life and myself.  Hate to hear I'm not the only one but comforting knowing it's not in my head.
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