I just turned 60. This is wonderful, as both my mom and her mother (my grandmother) died at age 49. My parents never needed to rest or needed naps.
I don?t know what is normal or even semi normal for fatigue issues for my age. What time do people my age tend to go to bed? Are naps common?
I know that when I?m on a flare, I need crazy amounts of rest, but lately , I need to rest very often.
Is this just what one might expect at my age with more than one autoimmune issue?
Main question...for our ages....(husband a bit older) what might be typical in terms of rest needed? Bed times? Naps? I?m use to needing more rest during flares, but it seems like for me and somewhat for him, it?s pretty much all the time now. Is this typical for my age? Sorry for the odd question. Thanks.
I am very sorry to read about your symptoms.
I know what it's like to wake up in the morning feeling terrible. Usually that means a bad day for me, and I need more rest.
Sjögrens Syndrome in my experience & reading affects all of us differently. I can go from terrible exhaustion to feeling better the next day. It's unpredictable.
For me, because of this I have to go to sleep very early (8 pm). Two naps a day for a hour or so help a lot, as does going to bed early. If I know that I'm going to be tired all day,
what works for me (as I've said many times), I take Adderall or Provigil before breakfast. Taking it later could interfere with your sleep (like last night for me). These two are powerful, but wonderful drugs.
Last year I found out that light exercise every day makes me feel a lot better. Now I do stretching exercises and a low-impact Tai-Chi. I also have Polymyositis and exercise stops me
from getting stiff and sore.
So I think you are an average type of patient. Many patients who have Sjögrens Syndrome, are prone to another Autoimmune Disease, such as Myositis, Raynauds syndrome and many others. This is sometimes called "Cross Over Syndrome" or "Mixed Connective Tissue Disease Syndrome. I have three autoimmune diseases.
Best to you.
Please post again.
Light exercise, often in a heated pool, is saving my body and sanity.
Even my bladder condition (Interstitial Cystitis, inflammation of the lining of my bladder) in improved with mild stretching exercise. Amazing isn't it!? My doctors know it, but they say most of their patients don't want to try exercise, they want pain medications. I'm not against pain meds (I take them of course).
Have you asked for a course of steroids (prednisone taper) to interrupt a bad cycle of fatigue?
IMMUNE DISORDER Fatigue is generally caused by inflammation. All of our immune disorders are inflammatory in nature.
The most effective anti-inflammatory is a steroid. But other anti-inflammatories will help to some extent. These would be Ibuprofen or Naproxen Sodium.
My pain cycle is as follows:
NIGHT: Difficult night (better now with Low Dose Naltrexone)
EARLY MORNING: Feel WORST when waking up.
MORNING: Improve during the morning.
AFTERNOON: Feel BEST in the afternoon.
EVENING: Decline a bit towards evening.
NIGHT: Difficult night.
repeat
Regards, Elaine