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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Burning Mouth Syndrome

Discussion in 'General Symptoms' started by Mij, May 12, 2013.

  1. Mij

    Mij Senior Member

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    I developed Burning Mouth Syndrome 3 weeks ago. I never heard of this until I did a search, it describes what I have. There appears to be several underlying causes and the one that fits my situation is vitamin deficiencies. My B12 level was/is down at 217, my folate was not tested. The BMS started the day after I started sub lingual mB12 and Metafolin, I'm not sure whether it was just a coincidence. I've discontinued Metafolin and started Thorne B Complex. The burning chemical symptoms that I have are still there so I'm guessing it's not the Metafolin.

    Has anyone had this? My thinking is that I may not need folate because my levels are normal and that I need to increase my B12 status which is what I'm doing. I'm stopping the B Complex for now to see if it goes away.
  2. Nielk

    Nielk

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    I had this when I first got ill 10 years ago. It was due to B12 deficiency. My doctor administered B12 shots weekly and it took some time but it eventually disappeared. I don't think that you can expect instant relief. It will take some time to raise your levels.
    Mij likes this.
  3. rlc

    rlc Senior Member

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  4. Mij

    Mij Senior Member

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    My doctor thinks supplements will bring up my B12 levels, she is not recommending shots for now. We'll see.

    It seems there are several causes, including peri menopause --> menopause. I see zinc deficiency as well. I've been taking iron to get my ferritin levels up and noticed a few white spots on my fingernail which I haven't had for many years. There is a delicate balance for iron/zinc/copper. Sheesh we try to improve one deficiency and it can cause an imbalance for something else. It just never ends.
  5. Sparrow

    Sparrow Senior Member

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    I have this off and on too. I'd had it for many years before I realized it was a "thing" and had a name, and that there might be anything I could do about it.

    I think it is related to a vitamin/mineral deficiency of some kind, but I've never been able to pin down exactly what. I eat a lot of iron, zinc, and b-vitamin rich foods when it happens and it tends to go away. I take supplements of B12, folate, and the other B vitamins, and a little zinc, but the supplements alone are never enough to keep it at bay completely. ...Which makes me think it might be iron-related for me.
  6. PennyIA

    PennyIA Senior Member

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    My mother and I have both had this off and on. My mother didn't get it until after getting diagnosed with fibro and the doctors didn't research further (she has since passed). I got it repeatedly after I got ill (still undiagnosed). I have several homozygous MTHFR and methylation genes - which means mom had at least a few of those. That tends to track wtih B vitamin deficiencies.

    I've also noticed that I tend to have it as more of an intollerance or allergic response. If I eat Kashi 7 grain original crackers - boom, I get it. (Not sure which grain). I stop eating them and it goes away. I started going gluten free, and experimented with several gluten alternative grains in one week - boom, I got it. I cut all of them, and it went away. Now, I messed up - I added two things back to my diet simultaneously and got it back, when I should have done just one thing. I'm just about over it again, so I'm going to try one thing tomorrow to see if it comes back so I can pinpoint if it's a specific grain that I'm not tolerating or what it is.
  7. Mij

    Mij Senior Member

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    So my doctor's office calls today to follow up on my burning mouth and I told her that I still have this almost 6 weeks later. I think it is peri / menopausal for me and maybe B12 deficiency since my levels were/are below normal. I've been taking B supplements and eating liver up the ying yang but the symptoms are still there.

    I'm not sure what she's going to do but I will push for the B12 shots again since she didn't think I needed them last time I saw her.
  8. camas

    camas Senior Member

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    I have difficulties with burning/flushing everywhere, particularly my mucus membranes which did seem to worsen around menopause. Burning mouth is the worst though. I feel for you. I've had improvement from taking Zyrtec every day, so in my case it's apparently a histamine issue that was worsened by hormone changes?
  9. Mij

    Mij Senior Member

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    Yes it's very possible. Ric provided a link which lists possible causes and there are several including allergies. Mine started with a viral infection (which I seem to be still fighting) so I guess anything that stresses our immune system will make us feel worse, than add the hormonal changes too. I also had a metallic taste which seems to have disappeared.
    camas likes this.
  10. PennyIA

    PennyIA Senior Member

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    I definitely experience this as an allergic reaction. The first time I got it was shortly after I discovered the very yummy Kashi bars. I ate three boxes and the mouth pain just kept getting worse before I figured that it might be something new in my diet. Stopped eating them, the pain went away. Ate five more (just to verify) and it came right back.

    Since going gluten free, I've also experienced it with some glucina products... not sure what exactly I'm allergic to - but I stopped eating them, got better - tried again - symptom came right back. And go figure. From what I can tell from online ingrediants - the only things they have in common are things I eat in other products, but don't get the reaction from. So, I'm thinking it's a couple of things I'm allergic to.

    I have also spent decades dealing with water tasting metalic - until I broke down and got rid of all of my amalgams. Metalic taste is gone now.
  11. rosie26

    rosie26 Senior Member

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    I have had a burning tongue, just from the tip - about 2cm inwards since April last year. Feels like a scald. Started to have on/off again periods a couple of months before (Beginning of menopause). Mentioned to doctor, I worried it might be cancer, still alive, so must be the burning syndrome thing. Have started taking Vit. B powder which I mix with water. I take it every 3-4 days but probably should start to increase now.
  12. Marg

    Marg Senior Member

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  13. Marg

    Marg Senior Member

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    I had had a burning mouth before I ever heard of FM or CFS. No one could ell me what was wrong. One guy wanted to take a biopsy of it and I got out of there fast. Nothing works except eating and drinking or chewing gum. I have been getting b-complex infections for a year,

    Dr. Klimas told me it is a common symptom of ME/CFS, that is all she said and ordered the B. It goes away once in a while but not very often. I have been getting an injection a week and it went to high.

    I have heard of a functional B12 deficiency but if that is the case the injections must not work or the supplements. I am not sure.

    Sometimes it feels like I took a pizza out of the oven and started eating it and the cheese stuck to the roof of my mouth and also burned my tongue.
    rosie26 likes this.
  14. rosie26

    rosie26 Senior Member

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    yes, it is like that Marg, thanks for your comments, it's good to know of others experiences, it helps us to help ourselves and what to worry about and what not to worry about so much. x . If you do find anything you think helps, let us know.
  15. Sparrow

    Sparrow Senior Member

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    I think I've almost definitely tracked down the cause of mine now - it's not B vitamins for me. It's iron. If I go too long without some iron rich foods, it comes back. If I eat some foods high in iron for a while, it goes away again.

    I wish you all much luck in finding ways to get rid of yours!
    rosie26 likes this.
  16. rosie26

    rosie26 Senior Member

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    interesting Sparrow, will try adding lots more greens, I am pretty good at eating red meat 3-4 times week. Will let know if I find it seems to work. :)
  17. Mij

    Mij Senior Member

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    Interesting to read all the experiences. I saw my doctor last week and she said there could be a number of reasons for this. So tomorrow I'm going for more blood work, testing for B12 levels to see if it went up since taking sub-lingual B12 for the past 3 months, ferritin to see if went up since taking iron, some liver tests and a transglutaminase IgA antibody test.

    I stopped taking B!2 sub-linguals last week to prepare for my blood work and the burning mouth has subsided. I think it's a coincidence but will start the B12 after my tests to see if comes back.
    rosie26 likes this.
  18. rosie26

    rosie26 Senior Member

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    that would be interesting hearing what your results are especially since you " uped" the B and iron. please let us know if you don't mind :)
  19. Mij

    Mij Senior Member

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    My test results show my low B12 status has more than doubled since taking 3000mcg/day sublingual mB12 3 months ago. My burning mouth syndrome has disappeared since around 2weeks, so I'm guessing low B12 was the cause.

    My ferritin dropped a couple of points despite taking iron. that's odd since I absorb iron supplements just fine.

    I haven't received my gluten sensitivity test back yet. I hope that's the culprit for my malabsorption problems.
    rosie26 and camas like this.
  20. rosie26

    rosie26 Senior Member

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    Thanks Mij, x
    I will continue taking B, think I need it anyway. The burning tongue still with me, was quite severe a couple of days ago but has abated again. Hopefully it goes away after I get to the end of menopause ! Could take a couple of years to get to the end of it. Hope it stays away for you now :)

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