B12 Deficiency, anyone?

[JustME]

I realize that there is a lot going on just now and that B12 response is not a big issue but I feel it is important to report my experience for what it might mean to others.

I remain more able to move around, stay upright and accomplish things HOWEVER, it feels as though practically every single muscle in my body hurts all the time.  "Pain" was not a big issue for me when I was flattened but, although this is not PAIN pain, the relentless nature of this muscle pain is a big drag. 

Also, it is accompanied by what I have always called a "poisoned" feeling.  I used to describe this to my doctor as feeling as though my muscles were full of acid.  That was before I knew anything about lactic acid.  I have returned to a level of functioning that has reminded me of the old bad feelings:  chronic headache and poisoned feeling, muscle pain and stiffness, continued cognitive problems, worsened sleep quality - wake each morning between 4 and 5. 

I think the B12 deficiency anemia forced me to function at a level which protected me from building up the lactic acid... or the inflammation... or something...  I don't know what but, overall, I think I probably feel worse but can get more accomplished which is very, very strange. 

 

[JustME]

Looked up acidosis.  Trying Alka Seltzer for both its alkaline and anti-inflammatory effects.  Might be helping the body wide poisoned aching - not quite sure.

[Karin]

Looked up acidosis.  Trying Alka Seltzer for both its alkaline and anti-inflammatory effects.  Might be helping the body wide poisoned aching - not quite sure.

Alka Seltzer sounds like a great idea. There is one that's called Alka Seltzer Gold that I've heard many swear by to relieve acidity.

I am not a doctor, so take the following with a grain of salt: Another thing might help is epsom salt bath, or magnesium sulfate cream, or if you cannot find the cream, you can also use epsom salts mixed with a bit of water and rub it on the skin. If that's going to help you'll see within minutes. Maybe some folinic acid too (works with the B12)? Maybe strong antioxidants would help? ALA (alpha lipoic acid) is the best antioxidant I can think of, but it can be very tough on the gut, causes yeast overgrowth. I cannot take it myself, but wish I could. That would help the detox.

[JustME]

Thanks much, Karin!

I pass out in salt baths.  Well, I did once (had to be rescued as I slipped below the surface) in the early days of ME and have avoided now for more than 3 decades.  Who knows if that makes sense.  I also find baths, in general, exhausting and hard to get out of which is too bad because I have a HUGE claw foot tub!

I remember someone somewhere talking about alka selzter gold but I can't, for the life of me, remember where and in what context.  Unlike the bath thing, I seem to need to learn most things over and over and over again!

Anyway, thanks for all the good info and for your interest.   I appreciate it!

[allyson]

Just me for coeliac they can now do a gene test - simple blood test that shows if you have ther gene or not
if not there is 99.9 % chance you will not be coeliac
no need for a bowel bioplsy anymore

I take care to take my b12 in the morning as all b vitamins seem to keep me awake

I was b 12 deficient and did not have perniciousw anaemia but I think my b12 levels are ok now though I take supp daily sublingually
I have also heard you can take it orally and it isw obsorbed that way too when it was once thought the stomach acid destroyed it if taken orally hence the sublingual method

[JustME]

Just me for coeliac they can now do a gene test - simple blood test that shows if you have ther gene or not
if not there is 99.9 % chance you will not be coeliac
no need for a bowel bioplsy anymore

I take care to take my b12 in the morning as all b vitamins seem to keep me awake

I was b 12 deficient and did not have perniciousw anaemia but I think my b12 levels are ok now though I take supp daily sublingually
I have also heard you can take it orally and it isw obsorbed that way too when it was once thought the stomach acid destroyed it if taken orally hence the sublingual method

Hi Allyson,

I must have mentioned the whole celiac thing in my first post, yes?  I did have the celiac panel and was negative for celiac but the doc. threw in B12 testing which I was not particularly interested in but which revealed B12 deficiency anemia which I have been treating with 5000 mg sub-lingual b12 for nearly 4 months months and have chronicled in this thread.

I don't blame you for not reading all the pages but, yeah, what you said about types of B12 was discussed.

[peggy-sue]

JustME, the pain and acidy stuff sounds like sort of payback-ish stuff - I find taking a carnitine supplement really helps with that.
It is quite expensive, sadly.

[JustME]

Hey Peggy,

It's not as bad since I stopped dairy.  Who knows what's doing what but the full body "feel the burn" has stopped being so all encompassing.  yay!  Also, the massive somnolence that accompanied it is better.  However (why is there always a "however"  ), I am more vertically challenged and have to keep moving or rock from side to side when standing, once again.

I have been doing less again so, yes, it could totally be a payback-ish thing.  But then why am I vertically challenged again?  I have no idea at all what's going on.  And, I now have a dog on CoQ10 so I won't be starting any expensive supplements myself.

I am going to use what increased endurance I may have (  ) to try to start some small income generating activities I can do on the couch, that don't need a brain, that might help me move away from the edge.  (  Ok, that sounds kinda dirty  )

Thanks for the carnitine info.  I will certainly keep it in mind... oh, who am I kidding!  I can't keep anything in mind.    I will come back and search this thread when I have totally forgotten!   

Thanks again!  Happy New Year to you and yours!

[peggy-sue]

 

The "having to rock from side to side" or keeping shuffling around while trying to stand makes perfect sense for anybody with ME.

Standing still requires the use of about 360 muscles, all taut, all "fighting" against each other all at once.

It requires all your balance, and tons of your proprioceptive awareness.

You have to keep your centre of gravity centred and stationary.

It's really, really hard work!


It is FAR easier to rock from side to side or shuffle around a bit.

Your centre of gravity then moves around a bit, you use different muscle groups all the time, but in smaller batches.

Your proprioception lets you know which muscles to use next, you don't need to concentrate on holding your centre of gravity in one position.....

you're more like a gyroscope. 

The muscles you've just used get time to recover before being needed again.

[JustME]

The "having to rock from side to side" or keeping shuffling around while trying to stand makes perfect sense for anybody with ME.

Standing still requires the use of about 360 muscles, all taut, all "fighting" against each other all at once.

It requires all your balance, and tons of your proprioceptive awareness.

You have to keep your centre of gravity centred and stationary.

It's really, really hard work!


It is FAR easier to rock from side to side or shuffle around a bit.

Your centre of gravity then moves around a bit, you use different muscle groups all the time, but in smaller batches.

Your proprioception lets you know which muscles to use next, you don't need to concentrate on holding your centre of gravity in one position.....

you're more like a gyroscope. 

The muscles you've just used get time to recover before being needed again.

I just LOVE the way you explain my experience!!!  I had no idea, of course, why I have to rock back and forth at the hips in order to stand and think and even converse (listening and speaking!) but I do.  I had a much simpler, but far less interesting and complete, explanation in mind - keep the blood flowing to the brain - but what you write makes much, much more intuitive sense.  What you write is just exactly what it feels like - "It requires all your balance, and tons of your proprioceptive awareness."  Hell, yeah! 

In fact, I could weep that you can explain what I experience with such accuracy!  Do you know how remarkable it is to have one's private torment understood and described so well?  It moves and amazes me.  Please to keep it up!

big thanks to you!

Your friend the gyroscope 

[Mewkiss]

I wasn't able to read all this but Cheney used to RX 10,000 parts per ml of hydroxycobalamin which I got compounded.

I currently take Jarrow Methyl B-12 5000 mcg.  I noticed I feel much better for a few days then nothing so I stop it for a few days.  I think I'm going to  try hydroxy oral next.

I also just saw on TV that if you are taking a statin drug, it lowers B12 so you have to supplement if you are taking any of those.

[peggy-sue]

Statins also lower your Co-Q-10.
I've got high cholesterol, but I'm NOT taking statins. Everything I've found they do works against PWME.
I'm taking phytosterols, I've lost weight, (I tried Co-Q-10 but it knocked me out), I've upped my fibre (which was up to start off with!)... I'm working on it.

[Mewkiss]

Oops I was wrong.  It wasn't statins it was meds for heartburn.  Sorry for the mistake.   

Yes you are right about statins and Coq10.

Sorry.

[peggy-sue]

No need to apologise,   >^oo^< 

I don't do joined-up thinking myself