Short question: Do you feel a distinct difference before and after your B12 injection?
I may have hit the trifecta when it comes to fatigue-causing illnesses. I went through treatment for breast cancer through the end of 2011; immediately following chemo, I got pneumonia. Once that cleared up I was thrilled to start serious exercise again and get back to work. Started working, running, hiking…SLAM!!! On the sofa for 4 days.
A few months later a blood test showed low B12; subsequent testing confirmed PA. Started on weekly loading doses, then monthly (I’m in the US). But there was little or no improvement in my fatigue for at least another year or two.
BC patients who went through chemo can have fatigue 5-10 years post treatment, so that was my first thought. I certainly had chemo brain for a year or two afterwards. The #1 recommendation for persistent cancer-related fatigue is exercise: which can worsen fatigue from either PA or ME/CFS. And I certainly found that exercise was likely to backfire.
Once I found this website, I realized that perhaps the B12 shots were too infrequent. Started self-injecting, first every 3 weeks, then every two when that did not seem to keep symptoms fully at bay.
This spring, I thought that every two weeks was the magic number for me, because I was making it all the way through the day without having to rest, and was increasing my levels of exercise — even running again, in my own pathetic fashion! I got up to 18 slow-paced minutes on the treadmill a couple of weeks ago.
You guessed it…SLAM!!! Back on the sofa.
So I had about 3 shots in a week, and now I’m on one per week. But although I feel better than I did those first couple of days of this relapse, I’m still struggling to get through the day.
I had never even considered a diagnosis of ME/CFS because I didn’t have 4 out of 7 symptoms…all I had was fatigue, exhaustion after exertion, and some sleep difficulties…lucky enough I have no pain, no swollen glands. But I just discovered they have changed the diagnostic criteria, and now it fits. And ME/CFS often occurs right after a viral infection, like my pneumonia.
Maybe I am just being begrudging about more shots. But honestly, I don’t always feel a big boost of energy when I get one. I’m not sure whether to increase my shots to daily until I feel better, or even do the opposite…hold off on the shots a bit, continue to rest, and see if this relapse improves, or gets worse, just to see if they are actually making a difference. It’s entirely possible that I would do just fine on a monthly shot, and that other factors are causing the fatigue. I should mention that I don’t have any severe neurological symptoms…never any pins/needles/numbness, although I get some restless legs, foot cramps, and burning feet.
My husband doesn’t believe the extra shots have done me any good…but he’s also not here during the day so he doesn’t know whether I’ve spent the day active or comatose.
I guess what I’m wondering is…do you all feel a distinct difference right after your injection, that then fades gradually? Is it really obvious to you that they are making a difference? Or can you have a bad day soon after an injection, and a good day after it’s been a while? Do you cycle through highs and lows regardless of your injection schedule? The unpredictability of this has been maddening.