Hi all - I'm new here and am grateful to have found this site. Following a several years of symptoms and various tests and treatment for other things, I was diagnosed with pernicious anemia (B12 was 134) seven weeks ago and have been doing cyanocobalamin injections since. The initial plan was to do injections weekly for the first four weeks, then every other week for a month, then go to monthly or perhaps less frequent depending on how the monthly injections helped. I didn't feel any change until after the 4th shot - I felt pretty good and was amazed at how much pain, fatigue and discomfort I'd adjusted to over the years. Best of all I could take a full breath without pain! My fatigue eased greatly, my sleep improved and my thinking cleared up a bit too. I found that during conversations I could access words that I'd been 'missing'.
Long story short - a day or so after the first skipped injection things went downhill in a hurry. An email to my doctor got me the OK to do another jab ASAP and stick with the weekly jabs until I felt I could stretch out the time between, so now I'm back to weekly. I haven't felt the same relief that I felt after those first 4 injections since and I'm feeling really discouraged.
I'm again struggling with terrible back pain that had been greatly reduced after those first 4 weeks of injections and there's literally not a moment of my day or night that I'm not in pain. Breathing is difficult again, feeling like my ribs and upper/middle back can't expand, and it's migrating up to my neck and shoulders as well as feeling like it's 'come through' to my chest wall below my collarbone on my right side. I added in a daily B complex vitamin as well as D3 (4000 iu) to try to round things out, and also to try to knock down any possible inflammation I got back on a daily Fish Oil for omega 3 (600 mg) and Turmeric (2000 mg) hoping they'll eventually help.
There's a huge amount of really helpful info in all your posts here, but I haven't seen too much about this level of pain and I'm looking for your input on this from your experiences. Could this still be related to my low B12 and (hopeful) recovery from it? I'm seeing an acupuncturist to try to cope with the pain and he seems to think that this kind of pain is not due to the low B12 - or at least to the low B12 alone. Talking to a friend brought up other things to consider - costochondritis, fibromyalgia, Lyme - but I feel like I'm floundering (and I feel like a bit of a nutty hypochondriac) and am almost hoping to hear that others out there have been through this (not to wish pain on any of you!) and came out the other side feeling good.
My long story short seems to have gotten a bit long, so I'll wrap it up. Thanks in advance for any advice/input you might have.