I'm always sleeping

Hi everybody, I have SLE, APS, neuralgia, Rayneuds & Retinal Eschemia. Since June 2014, I've been taking Mycophenalate (as well as other meds) as my body rejected Hydroqiline & Azathioprine. In Oct &Nov 2014, I had Shingles (which apparently is common when taking Mycophenalate) & for the last 3 mths I've been Anaemic. I'm on iron pills (3a dy) & although I have strength to go to toilet, cook a simple meal. I'm struggling with being motivated to go out (too cold for me & Rayneuds) & Im sleepy all the time. I was planning to go shopping today but I've just finished washing up & feel really tired now.

I'm not depressed, somehow I've managed to stay mentally positive but I am frustrated

Any advice welcome x

10 Replies

  • Have you had your thyroid tested as feeling tired could be sign of thyroid problem.

  • I don't think I've ever had thyroid tested but I'll get tested. Thx for advise ripon1756

  • Hi, i can really sympathise with you, it's awful feeling so tired all the time. I would definately have your thyroid checked and I think it would be beneficial to have your b12 checked as well by the doctor, they are both linked to auto immune problems, I have have problems with both of them, hope this helps xx

  • Thanks for your advice Kelfreem. I'll ask GP about having b12 checked as well. I take vit B liquid (randomly as I've run out) & need to find supplier in London. I've not had any obvious signs that it work tho'.

  • Hi Magsle

    So sorry to read of all your health problems. Another thought is how debilitating Shingles can be and it can take a long time to recover. My pen pal in US has found this after having it same time as you. Hope you improve soon, being so tired can be very depressing!. X

  • Misty14 - thanks for your kind words. I'm learning that after illness , I need recovery time as well so I have to slowly build up again.

  • Hey Misty. I hear you about being tired all the time. I have SLE Lupus (a rather severe form they tell me) I am stable now and just waiting for a flare. Dont know what they feel like as recently diagnosed. Hoping to remain stable so all I can advise is listen to your body. Works for me to keep warm, get plenty of rest and eat as healthy as I can. I went thru a stage of feeling guilty for how little I could do, being lazy etc etc. Please dont as isnt unusual, actually pretty normal for Lupus. Take care and look after yourself - if you dont no one else will !!

  • Hi Abby, Thanks for your kind words. Hopefully with regular monitoring & a healthy lifestyle you won't have a major flair, apparently this helps to control the lupus. It's great that you're doing this ASAP, it took me decades to get this right (due to extreme lifestyle) & when I did get healthier my body wasn't used to it, had a spasm & I had my 1st major flair. I'm going to ask my GP to refer me to a dietician so I have more balanced diet as I lose too much weight only eating fruit & veg which makes me feel too weak

  • If you want to see a dietician, hurry up, and follow up with GP regularly to chase for dietician response. I am still waiting for answers from my dietician since seeing her 20th Jan. Chasing GP's to send letter.

    Loose ALL processed foods. Go for natural foods. Fresh meat, fresh fruit and veg. Looking forward to my tea: prawns, peas, scrambled egg, over basmatti rice... No frying. Time to prepare approx 15 minutes.

  • Thanks for reply. Good to know that someone with Lupus is entitled to see a dietician. Hope you find diet that works for you!

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