Hello Didier,
How old are you? I am 25, and I have had bad fatigue and low inflammation ever since being diagnosed in November 2011. I was 23 then, so my diagnosis is consistent with the median age of onset, although my problems with hip pain go way back to when I was 19-20 during my first university years. The disease has progressed into my lower back (night pains), but still nothing really serious. I take 120mg of Arcoxia daily, which helps some with the pain, but not with the fatigue.
It's strange that my blood tests have always come back completely clear, yet I feel sickly tired and occasionally look the part as well (pallor, dark rings under eyes). I've been trying real hard to find relief for my fatigue issue, because I have this demanding job, but my successes have been few. Observations that I've made: the fatigue is relieved by really long periods of sleep, eating less and mild, mild exercise. Even slightly overdoing exercise can lead to some kind of hellish cycle where the body cannot recover and becomes more and more fatigued. The fatigue comes and goes in flares, and currently I'm in one. It may be that there is some connection to my allergies, because I'm highly allergic to pollen (according to tests), but I do not exhibit any of the symptoms usually associated with pollen allergy, with perhaps the exception of occasionally itchy, puffy eyes.
My fatigue is also associated with bad dreams and nightmares. I conclude that the bad dreams and nightmares are caused by the fatigue and not vice versa. This is because the "fatigue feeling" often comes on unexpectedly during the day even after an undisturbed night of sleep and then nightmares come the next night. Although it may be that these issues both reinforce each other. My mind and body seem to be unable to get enough sleep, no matter what. This is made worse by the fact that I cannot sleep more than ca 7 hours straight, although I know and feel that my body would gladly sleep for 10-11 straight hours if it only could.
Another thing that I can associate with the fatigue is feeling breathless, like I cannot get enough air. I have had a sleep study done, which ruled out sleep apnea though. The daytime tiredness/sleepiness is caused by the low inflammation, I know it. The feeling is like something was clawing at my attention, forcing it to conserve its energy (which, in my case, tends to result in a lot of procrastination and doing anything else but the hard attention-demanding task at hand).
I have read on these forums that for many, the biologics have helped with the fatigue, but for me these are out of the question at the moment because I have such low inflammation and no visible disease activity even when MRI is used that I do not meet the treatment criteria, which apply where I live. So I am left with this fatigue, which in my opinion is even worse than the pain. Pain can be managed, but the fatigue, in my experience, not so much. Anyway, I hope that you'll find some new energy soon, as I myself am trying to do.
