Had just yesterday said to hubby that the fatigue seems to have reduced the past week. Also discussion on being off work and resting for 4 weeks for first time since diagnosis and how I feel more human.
Today woke up and yep my favourite buddy is baaaccccckkkkk FATIGUE!
Oh Deeb, you have my complete sympathy! Exactly the same here, after weeks being ok fatigue hit last week and still ongoing. Can't stay awake past 9pm (any TV programme over an hour long has to be afternoon viewing!!). Wake up 7.30am feeling like I've been run over by a bus - for someone who never slept more than 6 hours a night and left the house for work at 6.30am it's pretty hard to take and sooo frustrating! My husband laughs about it but it really pisses me off🛌. Hope yours improves soon 🤞
Oh Dee tell me about it. It’s unpredictable it’s not like pain where you can ease it one way or another FATIGUE is all consuming and disabling. For me it’s like an outer body experience every thing is muffled and in slow motion while I just exist not participate or communicate my husband calls it my Zombie state . It was one of my first symptoms many many years ago and I’m still surprised when it happens 🥺🥺 it will pass as we say but ...... 🤬🤬
I have ankylosing spondylitis, and need the balance of movement with rest to manage my AS. Since lockdown I’ve been doing 1.5hrs of e revise every other day, but still less active than I normally am. This has resulted in my AS flaring and extreme fatigue returning. I’m back to needing day tune naps, and still feel drained when I wake. I realise although we’re shielding for 12 weeks, in reality it will be much longer. So I dread to think how long before this flare settles. I do empathise, it’s sunny outside yet all I can think of is bed. Be kind to yourself 🤗
I am the same just now and have no idea why I am so exhausted all the time. I reminds me of when I first became ill back in 2004 and was told I had M.E, but I don't think it ever was that. I could just sleep all the time. I am sleeping well at night and when I wake up in the morning I think I feel a bit less tired, but within about half and hour, I am exhausted again. I thought that while I was in isolation I would do a lot of reading and watching TV and DVD's. However, I read about one page of a book and my eyes shut and the book falls out of my hands. As to TV or DVDs I fall asleep and miss most of the programme and that makes serials etc difficult to keep up with.
I am finding it very hard to know why I am like that just now, but I wonder if it is just a result of being in bad pain, not being able to go out, stress over hearing and seeing so much about the virus and wondering how long we will have to stay inside. I don't know whether to give in and sleep or whether I should force myself to do something and stay awake.
I hope you start to feel a bit less tired soon, in fact I hope we all do. xx
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Hi holly-willow I have suffered with fatigue for so long and it had continued to get worse . I’m on methotrexate injections and a biologic. My methotrexate increased and I started injections about 10 months ago and my fatigue was blamed on s continual flare as I had swelling and mobility problems. Started erelzi in January and my fatigue has continued although my swelling and stiffness got better. I often blamed my fatigue on work. Since lockdown no work but fatigue was the worst ever I could sleep 36 hours wake get dressed sleep for hours and so on . I noticed it was much worse after methotrexate. Clinic told me to stop and just take biologic. Now my 4th week no methotrexate and I’m back in the land of the living
Hidden I try to make sure I get up shower and breakfast as a normal routine and then depending on level of fatigue if high retire to sofa and try to do mental puzzles or just day dream. On a low fatigue day I 'pace' if I can some or one task and then make myself do it so I just dont feel like time has just gone.
I was reading a book about fatigue and it was too much for my brain as it was saying literally do nothing no reading tv computer etc and I cannot see how this is possible if I remain at work. However some intersing things in it so try to do what is right for me.
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