During the beginning of treatment, does anyone sleep a lot?

[Blinkysmom]

I'm self-injecting for a month now and am always vey sleepy. I take magnesium, folate b-complex and b6. Thanks! Zzzzzzzzzzzzzz

[clivealive Forum Support]

Are your neurological symptoms improved any?

[Blinkysmom in reply to clivealive]

Yes. The burning in my calves is gone.

[Blinkysmom in reply to Blinkysmom]

No. When I say tired, I mean I'm in bed all day! I've never before had a wheat or dairy problem.

[pvanderaa in reply to Blinkysmom]

My gluten and dairy issues showed up at the same time i was diagnosed with B12D.

Which came first? That is hard to tell. I think i went dairy free before being diagnosed then after the tiredness continued, someone at PAS suggested that i try going gluten free as well.

I've never looked back.

Start a timed logbook of all your symptoms and also all your food, drink and meds. For me, The tiredness shows up 24 hours after the offending food.

To figure out what foods were causing me problems, i would make a rice casserole or a pot of soup of ingredients i knew were safe and eat this as one of my meals (supper) for a week. This took some of the variability out of the equation and i could then monitor the food at the other meal (lunch) as I basically ate the same breakfast each day.

The logbook really helped as i was having lots of short term memory loss at the time as well.

I also identified soya as another issue and particularly MSG (natural flavoring) as well.

Stressfull situations, like my daily commute, as well as car pollution (nitrous oxide?) also seemed to be factors. Stress consumes B12, and if you can't recycle it in your gut, it just goes down the toilet.

I've also developed an allergy to sunlight (UVA & UVB) and get a symptom on tiredness about 6 hours after exposure which typically end after i have a poo which is usually diarrhea if the exposure is more than a dash to the car. I wear SPF 100 sun screen for any outside work.

The logbook also helped monitor progress of the nerve repair as it was very slow (years). I assessed a daily severity score for each symptom as things went up and down on the roller coaster ride that started once i got on B12 injections.

Finally, I was able to use the log to convince my GP that I needed more frequent injections and that I wasn't a total hypochondriac. I'm now on weekly cyano-B12 that I self inject.

You also need to do gentle "range of motion" type exercises to stimulate nerve repair. It is very hard getting started but, once the muscles start to move, it becomes easier.

Pain is a symptom that is totally counterintuitive as it seems to get worse as the nerves repair. The brain takes 2-3 days to recalibrate to the stronger signals and if you can convince yourself that the pain is an illusion and work through it, it goes away faster.

Tiresness is similar and sleeping all the time doesn't help. Getting up and moving helps get the B12 from the injection site circulating in the blood.

Don't over do it and pace yourself and you will start to see progress in your logbook.

[pvanderaa]

Have you gone gluten and dairy free? My tiredness symptoms arise after gluten or dairy contamination. I also get brain fog and diarrhea 24 hours later.

[Blinkysmom in reply to pvanderaa]

Oops, I meant the no for gluten and dairy free.

[Silver_Fairy]

Do you take your magnesium at night? It can make some people sleepy.

[Blinkysmom]

Yes, I take 800 Mgs. Per nite.