I was wondering if anyone else is experiencing more pain
Because of vitamin deficiency from the Meds being prescribed / depleting important nerve vitamins
Or is this just normal EM pain that’s getting worse
Hi,
I am in California and have been fortunate to find doctors who know about this disorder. I am currently taking vit D, 5,000 units, B12 (necessary for normal nerve function, alpha lipoic acid (over the counter, good for nerves) and a magnesium cream, a dime size squirt of the cream rubbed into a fatty area, like tummy or butt, three times a day. The cream can be found at any pharmacy or probably amazon online.
I am so sorry for you, and all of our suffering.
Best,
Motherlove
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Hi mother love thank so much for your reply
I was wondering, have you noticed a difference in pain level by taking these vitamin supplements ??
Any way thanks a ton and I’m going to try these suggestions !
I have noticed a lessening of symptoms, especially with the magnesium
cream. I know vit B12 and alpha lipoic acid are necessary for normal nerve
functioning, so I assume they can only be helpful.
Best to you,
M.
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Hi,
It is now almost April 2018. I stopped the B12 about three months ago as a lab test showed a very elevated B12. I am also taking L carnitite.
I am considering Loratidine and Famotidine as I have been reading l. Afrin MD and his understanding of mast cell activation syndrome. From my reading and personal medical history I don’t think a trial of those two over the counter meds will harm me. Have you settled on any supplements?
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Yeah I’m taking a whole ton of vitamins and supplements…I still get flares and can’t put put pressure on my feet for long…
But soon after taking the vitamins first thing in the morning I can get ALL pain to drop to 0-1 level.
It’s pretty amazing and it’s like clockwork.
I can’t explain…
I’m Taking:
a good multivitamin (non GMO no sugar)
Sam-e
NAC
Vit D/K
Orange juice organic
Potassium from a banana
AL-CAR
Biotin
Coq10
Zinc
Alpha Lipoic Acid
All burning goes away and huge twisting pain.
I usually take everything first thing in morning and then evening when the pain comes back, again soon after the burning is gone again.
I’m still testing out dosages and adding in stuff just to see if it could get even better.
Again I still deal with flares and heat sensitivity, just
I think it’s weird that all the vitamins can take away the burning, is it a vitamin deficiency?!
Maybe someone has some answers please
Hi, that’s interesting! Do you have an idea of which of the supplements you’re taking that seem to be helping most?
My impression is that people seem to be generally better in the morning, but that you attribute your lack of morning pain to something more than that?
How long after you take your vitamins do you notice relief?
I wonder if you could take some of these things twice a day for even more improvement?
Sorry, so many questions haha. best wishes
Yeah definitely I have a big clue what ones are most important
The Multivitamin
Vitamin D/K
Potassium from a banana
And the organic orange juice (no sugar)
Alpha lipoid acid
I usually wake up every morning with level 6-8 burning pain first thing in the morning.
I take all vitamins right away when I awake and it’s about 30min-45min later I lay there and wait to put any pressure on my feet, amazingly while waiting all pain drops to 0-1 level…then I can put pressure on my feet and get things done.
I will say some days are tricky - not very often though…but it seems for whatever reason I need more of something, and I have to figure out what exactly it is.
Usually it’s potassium, orange juice or vitamin d.
Yeah I’ve been doing this for over a year now…I find it very odd and funny…-and thankful I can get the pain and burning down naturally- it is pricey though.
Has anyone else had this happen?!