Awful Mornings!!!!

[Ophelia1]

Hi all,

I posted last night about earrings, painful ears and lupus. I now have another question. I was diagnosed a year or so ago and during this period I have begun to recognize when I am having a flare and feel that I am getting to know this disease better. I'm working from home due to covid, which is excellent, since I don't have to battle with public transport and the work place. Despite being able to work from home, I have noticed that my mornings appear to be uniformly dreadful. I find it very difficult to wake up and to get going. Once I have managed to get up, eat my breakfast and get ready for work, I find it very difficult to concentrate and feel dizzy and anxious. A couple of times a week I become faint and nauseous at some point during the morning and have to put my head between my knees, which improves matters. By midday, I usually start to feel better and the rest of the day is usually uneventful. That having been said, I do find that I am exhausted by about 6pm and am in bed by 8pm. I used to be a night owl, but that is no longer the case. I used to wake up early in the morning full of beans and that is no longer the case either. My question is this. Is my experience of feeling dreadful in the mornings common?

[svfarmer]

Hi Ophelia and welcome to the group - the answer to your question is yes a lot of us lupies find mornings a struggle and the fatigue is awful for me as is for most people on this group , from my experience you have to listen to your body and rest - I’m also in bed by 8pm and sleep 11-12 hours every night , are you on any medication ? Xx

[Ophelia1 in reply to svfarmer]

Hi there - I'm on no medication, though my rheumatologist prescribed Hydroxychloroquine, and other drugs at that level. I found that these medications actually made me feel worse, so I stopped trying to take them. I take co-codamol for pain and limit this to once daily at night. I don't take ibuprofen as I have gastro issues and find that it gives me a lot of pain. I have started attending a masseuse for the pain I experience in my hips, knees and feet. I'm also giving some serious consideration to seeing a reflexologist for my feet, which are chronically troublesome. I find that particularly at night my feet tingle, burn and ache, sometimes all at once. Have you had any experience of these and do you recommend any medications for the morning horrors?

[svfarmer in reply to Ophelia1]

I think it may be better if you get a review with your rheumatologist in the view of trying different medication I know for a lot of people hydroxychloroquine really helps but takes a couple of months to work - I cannot take it as had trouble with my eyes - I’m on methotrexate which helps with all my lupus symptoms . Yes I also have had problems with my feet at night, I was sent for nerve tests but they couldn’t find anything wrong - lupus is such a complex disease with many different symptoms x

[Bebe76]

Yes, what you describe is very similar to what I experienced when I was first diagnosed with lupus and flaring. I struggled with this for several years until I saw a new rheumatologist and my medications were changed. My mornings are much better now that my lupus is under control with the right medications.

[Tiggywoos]

I do feel for you as mornings are hideous . Horrendous hangover headache 🤕. I think it’s pretty common with AI disease to feel dreadful first thing . There was a good webinar on the scleroderma website that was about fatigue and why we feel so exhausted when we wake up . I fell asleep twice during it 🙈but what I saw was good . Basically chronic pain doesn’t stop at night so the body continues dealing with it . Definitely agree with svfarmer do have a rheumatologist review as the hydroxy may protect you from further issues down the line

Take care xx

[BK47]

I too am hopeless in the mornings. I used to manage a full time job and 4 children but now I can’t manage anything til about 10.30. I gradually pick up speed during the day and sometimes have good days when I can do a lot. But mostly I feel that I operate at about 30% of what I use to do. Thankfully I was medically retired so I don’t have to work now. This all makes me feel guilty and unreliable as I often have to cancel things if I just can’t get going.I hope you can take things easy in the mornings and don’t feel bad about it. Your body knows what it needs and you must rest when you can.

Best wishes.