Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Mouth pain and burning lips?

Discussion in 'General Symptoms' started by Strawberry, Apr 4, 2016.

  1. Strawberry

    Strawberry Senior Member

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    The roof of my mouth was very painful and swollen this morning, as if I had scalded the entire mouth. My lips were also burning. It made it extremely difficult to eat this morning. Thankfully here at lunch time the pain is going down and swelling in the roof of my mouth is a little less. My lips no longer burn, but my tongue feels like I licked sandpaper. :eek: Does anyone else get this? Or know what it is?

    Although today is the worst I have had, honestly I have had this off and on since I was pregnant with my now 21 year old daughter. Which is when the chronic sickness started. Normally I get very mild itchy/pain in my mouth before the sore throat kicks in, so I expect tomorrow or soon I will feel sick. If this is a virus, obviously Valtrex isn't touching it, its making it worse?
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    I have this constantly, along with the entire left side of my throat swollen and in my case, it is part of the MCAS/allergic reactions. It feels like cotton has been stuffed down my throat but I cannot remove it. The roof of mouth feels as if an entire layer of skin was burned off. Sometimes it happens to my cheeks and gums, too.
     
  3. Strawberry

    Strawberry Senior Member

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    Could this be histamine then @Gingergrrl ? What you said reminds me that two or three times in the last few years I had what felt like a sinus infection on one side of my face (or a dental issue which it never was) that went from my tonsil area to my eyeball. I didn't think of it at all in relation to what happened today, but maybe it is? All the "sinus infection" pain previously were on the right side, and the swelling on the roof of my mouth was on the right side. Burning pain today was all over.

    Thankfully the swelling on the roof of the mouth (one side only FWIW!) has now gone completely, which was good as I kept getting tiny granules of food caught in the fold. Now the roof of my mouth feels bruised and my tongue is just tender, no more sandpaper.

    So histamine reaction? Or could this still be viral reactivation?
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Obviously there is no way for me to know and am not a doctor and would only be guessing. I can tell you though that both my MCAS doc and my new PCP said that you can have MCAS reactions (angiodema, swelling, pain, itching, etc) that are unilateral and only on one side of the face or throat. I really do not know why this is. When I have the burning pain on roof of mouth, it is the entire mouth, but when I have swelling in tonsil and throat, it is always on the left side. Am actually thinking about seeing an ENT to look more closely at my tonsil.
     
    Jennifer J likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    the reaction depends on where the most concentrations of mast cells have built up and they can build up anywhere
     
    Jennifer J likes this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    Makes sense and I must definitely have more mast cells on my left side of mouth and face.
     
    Jennifer J likes this.
  7. Strawberry

    Strawberry Senior Member

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    How weird!
     
  8. Groggy Doggy

    Groggy Doggy Senior Member

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    I am so looking forward to the upcoming NIH study since they will be looking at Serum tryptase.
     
  9. Strawberry

    Strawberry Senior Member

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    Okay, here it is two weeks later and I still have the issues. The swelling in the roof of my mouth is gone since the day I posted, but my mouth and lips still burn. My salad tasted "fizzy". It had almost gone away then Friday I had Swedish Fish, and over the weekend I had some red jello. I am really starting to lean towards this being a reaction from food coloring.

    @Gingergrrl Are you still having issues? Or have they gone away for you?
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    No, my MCAS is flared up really bad and can only safely eat 4-5 foods right now which I am alternating like lamb and rice. I do not tolerate any kind of food dyes, artificial colors or flavors, in foods or medications and doubt that I ever will. Everything that I eat must be fresh or frozen immediately. I was doing better for many months and am not sure why this changed. It is very, very discouraging for me to be honest. I had episode this morning b/c I attempted to eat a fruit that was "safe" (I had 5-6 fruits that I tolerated well and this was one of them) but it caused the thick glue-like phlegm and throat starting to close so I had to take my rescue medication (which Thank God still works very quickly.) Yellow or red food dye would trigger full anaphylaxis for me and is the very top of my list of things that are intolerable. wouldn't mess around with it if you suspect you have MCAS, just my opinion.
     
  11. Strawberry

    Strawberry Senior Member

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    I am so sorry to hear you are going backwards currently @Gingergrrl ! Not the news I want to hear from anyone that has suffered so severely.

    This definitely concerns me, as I have no clue if it is what is going on or not. I have been eating swedish fish for a few weeks as a "sore throat lozenge" but I think I will give that a break. I have never knowingly had issues with food coloring before, but I don't want to risk going down that rabbit hole. I will deal with a sore throat for a few weeks and see if this burning mouth pain goes away.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    Can you use a cough drop or candy without a food dye? It is much harder find but it can be done. I have one brand of ginger hard candies that are literally just ginger and honey and also a ginger gum that I can tolerate. But any commercially made gum/candy usually has dyes.
     
  13. Strawberry

    Strawberry Senior Member

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    This was a splurge purchase, in a moment of childish weakness. :whistle: Normally I can't eat candy at all, even for sore throats. TicTacs work halfway decent... But I am sure even the white ones have stuff I should probably avoid for the moment. We do have ginger candy and gum (my daughter used to have severe nausea bouts) but I have no idea where it is since we moved. But that is a good idea to try to find it.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Everyone with MCAS is different but for whatever reason I tolerate ginger well and can drink it in tea, food, gum etc. am barely tolerating anything at present but the ginger candy/gum is still okay for me for nausea or dry throat episodes.
     

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