Severe fatigue and hallucinations

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Hi, my husband has so many issues from this disease. He also has A. Spondylitis. He has had months of sleeplessness, constant edema, some sores onlegs. Has breathing issues. DOES anyone relate to the falling asleep as though u have narcolepsy? He is sleeping better at night now with no explanation-but in this season of this crazy disease its like he can sleep always. When he dozes he talks things that make no sense. Like talk in ur sleep. But it is like  he’s awake and then not. Sad. Drs have no answers just constant tests.  Tests come back ok so far. Feedback would be awesome! 

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  • Posted

    Hi 

    I have the same issues has your husband can fall asleep any time. I have also had lumps on my legs but no one would admit it was to do with  sarcoidosis it is now nearly two years and finally starting to clear up. This is a nasty illness and all the Drs can do is to continually do tests which do become annoying. I treat each day has it comes now. If I feel tired I rest I try and go out as much as possible. I am now retired and hate being indoors all the time. It appears no two people are the same I hope your husband starts to feel a bit better soon . 

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  • Posted

    Hi I have had this crazy disease for almost 2 yrs i can feel so tired but then can't sleep at night or i will wake up almost crying in pain in my shoulder, legs and ankles i have alot of allergies so i cant take prednisone or any antiflamitory drugs and lately i ask questions over and over and talk stupid and i know i want to say something but its doesnt come out right people family will tell me what i want to say that doesnt help makes me feel stupid and its making me depressed i just could cry

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    • Posted

      Hi Katlis,

      It may be a good thing that you cannot take steroids or Methotrexate ( for instance) as the side effects have proven to be disastrous for me. For control of pain l can have a cocktail of Indometacin, Codydramol and Paracetamol or if not taking these medications.... a good bottle of red wine helps! AND a strong POSITIVE ATTITUDE is so important.

      Keep your chin up... you are not alone!

      Kind regards

      David

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  • Posted

    Hi DNR 77,

    I am writing this at 3:42 AM and have been awake for about 1.5 hours after about 4 hours sleep. I gave up counting sheep many years ago and put my inability to sleep for more than a few hours at a time to taking Predniselone (steroid) in various dosages.

    I would pay good money for 7 hours sleep per night! Taking this medication has caused me severe sleep issues and associated weight gain issues!

    It has also contributed to me being borderline Diabetic and having Periphial Neuropathy in my limbs....particularly uncomfortable in my feet.

    I am not looking forward to a full day in hospital next week with My third Lumber Puncture.....(NOT delightful) and followed by 2 sessions in the MRI scanner (enhanced brain and full spine imaging) in the investigation for Neurosarcoid or whatever perhaps unnamed condition that affects me.

    It's now nearly 5 years these investigations have been going on and I am still positive in mind and attitude.... because negative thinking is counter productive.

    HOWEVER this forum has taught me that we are far from being alone in these very complicated medical issues and further, the support of my long suffering wife has been crucial in keeping me on track.

    Go lightly folks and follow the motto taken from my blood group... B Positive.

    Kind regards

    David

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