Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fatigue problems

I am having horrible problems with fatigue. Its seems that no matter if I sleep well or not, I constantly feel like I have been awake for 48 hrs straight. Its maddening. I have obviously had AS for 25 yrs, but I have only been diagnosed about a yr. The fatigue has been with me for a little over a yr. I just dont feel like doing anything. Its depressing to feel this way. How do you folks handle the fatigue, or do you even have this issue?

I was on enbrel for about 6 months, after about 2 weeks the previous 20 yrs of stiffness had went a way. but the fatigue as well has other wierd things started happening. I experience lots of nerve type pains in my arms, but especially my feet. The foot pain and numbness persisted long after quitting the enbrel. I have recently started taking B12 shots and the foot pain has improved dramatically.

Started seeing a new Rheumy upon initial examination and xrays he didnt think I had AS no fusions, spine looks normal. After an MRI of SI area, with and without contrast, based on that and symptoms he changed his mind, and agreed with earlier DX. He said it was odd that I had suffered so long untreated and didnt have any fusions. The MRI report stated that there could have been active PA or AS at one time that was currently in remission. I am just sick of the fatigue and foggy memory. I used to practically have a photographic memory. Its shot now.

This doc has me on sulphsalazine, and celebrex, I have pain but its managable, Its different than the pain I suffered from during the ages of 20-45, those yrs prior to enbrel consisted of extreme muscle stiffness, and muscle spasams in shoulders and neck, now is low back and SI pain. If I get worse, he has mentioned trying me on Cimzia. Said he seems to have better results with that on his AS patients, anyone here with much experience with that one?

celebrex gave me brain fog.

fatigue? i got it at the start of a big flare; all I wanted to do was sleep, just like when you get the flu. only methylprednisone and humira got rid of the fatigue. in between flares, i wasn't as fatigued; didn't even realize i was a bit fatigued even then, til I started on methylpred, then humira, and i felt like I was "on speed" by comparison....once on those drugs, i had boundless energy.

so fatigue? yeh. had to find drugs to attack the autoinflammatory disease process at its root to get past it.

too, though, other things can cause fatigue or make it worse: thyroid, vit B12, iron are a few things your GP should do blood work for....rule those things out.

Hey Bax,

I struggle a lot with fatigue. I probably spend more time sleeping than awake at this stage, but it's no doubt related to high levels of uncontrolled inflammation.

I'm sure that once you get the inflammation under control, the fatigue will subside

My B12 was very low, taking B12 shots. I still have the fatigue, but oddly enough it has taken away 75% or more of my foot pain.

For me- a lot of things cause fatigue. If my disease is not being managed well, I have more fatigue. Certain medications to treat the disease or symptoms can cause fatigue. I have anemia so docs always have to make sure my ferritin doesn't get too low or else I need an infusion. Being low on iron causes fatigue. Also, a smart doc figured out I am low thyroid even though my labs were normal. Treating my hypothyroidism has helped me have more energy. And I have found biologics, steroids and LDN help my fatigue. The fatigue aspect of this disease sucks! Hope you get it all figured out with your docs.