Hello,
I've been sleeping so much. I've noticed tho that 10 hours of sleep helps me and I can function for a couple hours if I don't do anything strenuous. But I'm drowsy again after a couple hours.
Has anyone done this and are there any chances of it getting better.
I've heard some people go into remission -- is this true? I'm ready. ;D
Thanks for any feedback.
Marie
Oh that sleeping is such a pain. When I first was on the board way back when Scottie was kind enough to warn me about not going to far away from home unless I was sure I could make it back with out fatigue getting you. Thank you Scottie.
You could probably give me an iv with expresso in it and I would not budge when I hit one of these tired spells. I have tried a variety of meds and only one med didn't make my heart feel like it was running it's own race. The one drug was almost terrific. I woke up and could get some things done and actually make it out for a time. Was nice as I was able to go with hubby on his last flight (retirement at 65)
However, always there is something out there to get me. This med sent my pain scale through the roof.
You might get lucky if you hit a med that will work for. There are sleep clinics but but I have never tried them
Do you know how to write a pm on this site?
I will be watching this site to see if anything works
Thank you for the reply Confused.
I have tried a few sleeping aids thinking if I slept soundly at night this
wouldn't happen during the daylight hours, but I'm still struggling.
LOL at espresso iv! ;D
Marie
Hi :)
The sleepiest I ever was, was when I went hypothyroid. I just couldn't stay awakw. It sorted out when I got a diagnosis and medication.
I still get fatigued quite easily but don't sleep as much.
take care - Scottie :)
Thanks so much Scottie. :)
Hello,
I haven't been here in awhile, but I seen this posted and thought I would add. I have times when I want to sleep and sleep, but it's usually when I am in a flare. It is common for me to get sleepy after I am up for about 2 hours, but I try to over ride that. I usually sleep only about 6 hours.
I go a lot to a lupus community.
Have A Blessed Easter!
susanep
Hi Susanep, Thanks so much for the feedback. I am still struggling and sleeping for 12+ hours a day now.
I have a visit with the rheumatologist in a couple months so hopefully he will have some advice.
Thank you again. Marie
Hi Marie,
I'm sorry you are experiencing this unrelenting fatigue. Unfortunately if you were to ask folks here what single symptom affects them most significantly, it would be fatigue. Little comfort though, isn't it?
My doctors have a difficult time assisting me because it is so complex.
It would be worth getting a sleep study done, to tell you the actual quality of your sleep. Mine told me I was awake much of the time, even though I had no awareness of this. I then attended a six week group cognitive therapy of sorts, that offered me some tools that have helped.
Pain is also another factor that can impact quality of sleep and fatigue. Pain that lives constantly in the background can be draining. That's where pain management can help improve your quality of life. I use gabapentin, acupuncture, massage, physiotherapy, meditation and mild exercise to assist me. I have tried many other things too, but these have proven most effective for me.
I also repeat the recommendation to have your thyroid checked.
And lastly, I suggest you be sure that depression isn't a potential cause. Most people with autoimmune disease deal with this periodically as a result of living with chronic illness. I know I have. And I have sought medical help on more than a few occasions.
I hope you can get help sooner that a few months. Fatigue is a horrible thing to live with.
Thank you Carebear,
Yes, the pain in some form is always there and my son recently said I was depressed. I have also been having headaches almost daily. I might address those things and see what helps.
Thank you again for your answer.
Marie