Has the fatigue ever gone away for anyone here?

I began showing symptoms for this disease 6 years ago when I was 19.

The fatigue I felt was alarmingly abrupt. I didn't yet know I had UC, but the first time I saw trace amounts of blood in my stool, the fatigue hit me like nothing else. I never felt as tired as I did before in my life. My eyes felt constantly droopy and weak, and my whole body just felt sluggish. I used to go out for runs a lot, and I almost immediately went out of breath. This feeling of lethargy has never left me.

In the past, prior to UC, I slept around 7-8 hours to feel refreshed with unlimited energy. Now 7-8 hours will keep me napping several times throughout the day, and I'll feel groggy and disgruntled upon getting up from the naps.

The fatigue has become much more of an annoyance since getting a fulltime job. I feel like have no free time at all during the weekdays. I have a standard 40 hour week job, but by the time I get home I am absolutely drained and need to drag myself into bed to ensure I get enough sleep so I don't fall asleep at work the next day.

On the weekends, I sleep around 12 hours and I'm still pretty tired throughout the day.

It sucks because I can't even drink coffee or take any caffeine because I start seeing mucus when I use the restroom.

I really hope there's something out there to cure us. The fatigue isn't even the worst of it. All the permanent side effects from prednisone are now revealing themselves to me after having been on it 6 times.

I don't even know how long of a life I'll live if I'm feeling like this at the age of 25. I feel like a zombie as it is. Can't imagine how this is going to feel later on in life when the effects from natural aging compound on top of the effects of UC and prednisone.

Post Edited (UCHealer) : 1/2/2017 6:13:53 PM (GMT-7)

when was the last time that you were on steroids? You could be going through withdrawal; it can cause extreme fatigue.

I take monthly b-12 injections, they do help a lot with my fatigue.

I'd speak to your GI or primary care doctor, maybe they will run some tests on your blood to see if you're low on Iron (it is common) or another vitamin or mineral. If they don't find something then maybe a hemotologist can help.

What meds are you currently on?

ks1905 said...
when was the last time that you were on steroids? You could be going through withdrawal; it can cause extreme fatigue.

I take monthly b-12 injections, they do help a lot with my fatigue.

I'd speak to your GI or primary care doctor, maybe they will run some tests on your blood to see if you're low on Iron (it is common) or another vitamin or mineral. If they don't find something then maybe a hemotologist can help.

What meds are you currently on?

The last time I was on steroids was in October.

No, fatigue has always plagued me since the onset (before bleeding) of my UC.
Can't remember what not fatigued feels like. Found it nearly impossible to work full time with any position, attempted a few times, with any stresses - especially since I care for 90% of the domestic duties in my marriage.
Thankfully I've been offered a PT position, that pays decently, from home that gives me some flexibility.
Convincing others that I constantly battle fatigue is another animal (especially because I'm in remission and "look" fine) but I recently came across this UK admission http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/fatigue-and-IBD.pdf that validates how I feel all the time (although everyone around me still expects 100%).

Good luck - stay strong

I'd check blood iron levels, vitamin b12, b, and d. Some times autoimmune disorders come in 2's or 3's, have you ever been tested for Lupus? As it can cause a lot of fatigue, like described in the 12 spoons story /butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. I mention it because it sounds like fatigue is a constant before uc, durring flares, and while in remission. Usually uc fatigue is worst during flares and improves as we heal, and goes away in remission. I could be totally wrong * shrug* anemia explains it too.

UCHealer said...

The last time I was on steroids was in October.

Could possibly be steroid withdrawal, are you having problems sleeping, headaches, hot/cold issues?

I wouldn't rule out 6-mp, I had a real difficult time with fatigue while on it. I switched to Remicade and my energy levels went up.

I had horrible fatigue in my last two years with UC. It took about a full year to get my energy back after having surgery. I cannot positively state is was the UC alone, but perhaps the disease and all the medications I was taking.

Sue

I have dealt with constant fatigue since my diagnosis about 2 years ago. It is definitely worse when I have inflammation going on but is still there even in strong remission. I really don't think doctors will be much help. Some report benefits from b-12 injections. I believe it just comes with the territory when you have IBD.

I find forcing myself to do things helps...exercise is huge for me and I also seem to feel better after socializing or playing team sports. I usually have to drag myself to attend these activities but am always glad I did. Have you considered that you may be anxious or depressed? Both can cause fatigue.

It angers me when i read posts where a doctor asks one of us to see a psychologist due to what's an obvious uc symptom. It's such an antiquated 1950's thought process that deserves strong rebuke.

I actually don't think it's such an offensive question at all, ipoop/prisoner, depending on context. Not uncommon for people with chronic illness to suffer some form of depression or anxiety and I would have no problem with my doctor asking me if I was dealing with either, as part of his/her detailed assessment. I think it's offensive when doctors use it as a copout i.e. "I can't figure out what's wrong with you so you must be crazy" attitude.

Have you ever had mononucleous/epstein barr?

http://www.wellnessresources.com/health/articles/epstein_barr_virus_ulcers_inflammatory_bowel_disease_and_other_gut_disorder/

Often the people I deal with that have epstein barr issues exhibit extreme fatigue especially after steroid series. They usually manifest in their mid to late teens too.

Good luck finding a way to reclaim your life. Keep searching for answers!

UC prisoner said...
At my age, they attribute the fatigue to osteoarthritis and aging, regardless that I've experienced fatigue since I was 30.

Of course, blood levels should be checked but be aware that sometimes it provides no answers

Is osteoarthritis a complication of UC or from the meds long-term? I get joint/muscle pain from mesalmine medications.

I simply have no stamina to do anything. I can barely walk a mile and even then I amble. I was supposed to pack for a major move at work, but I get exhausted. Partly, because I don't sleep well at night, but I also don't think I absorb nutrients well. I do take the Forvia multivitamins, and eat as well as I can manage.
My muscles are like those of a child!
Teacher
(Apriso, rowasa, vitamins)