Hi folks,
I hope everyone is doing okay, at the very least.
I have had many different manifistations of pain throughout my body with the EM, but the lastest installment seems to be searing pain in my tongue.
Ayone having any experiences like that? It was mostly on the sides to begin with, but lately it has moved to the tip of my tongue which looks very red and inflamed when it is really flaring. It really is quite severe pain. thanks
Hi, that sounds horrible, I haven’t experienced anything like it and hope that you find something to ease the flares. Not easy to stick your tongue out to cool it down.!
Take care
Laura
Hi Leah.
I too have bouts that come and go with burning tongue. It is terrible. I have been to the doctor just for this because at first I thought it was an allergic reaction. This was before I knew I had EM. They just thought I was crazy but gave me something called magic mouthwash. At first I thought they were giving something just to shut my crazy moth up but it did help for a short while. It numbs your mouth for a short while. Enough to let me eat something real quick then numb it again. I looked on line and found info on burning tongue syndrome. It’s a real thing but no one knows what causes it. In our situation I would strongly think it is the EM. Mine will flare up for weeks at a time then just stop. Only to come back again. I would see your doctor hopefully you have one you trust if not they might dismiss you as crazy. The numbing moth wash at lest let’s you get some food down so you don’t starve! Let me know if you find anything else that works for you and if you see a doctor please let me know if he has any ideas. I would appreciate it. Thanks. I’m sorry and I hope it goes away soon. Even for a while.
Alina
Hi Alina, thanks for your reply. I am sorry for the delayed response but having some technical problems here. I will look into that Magic Mouthwash stuff. I have tried the Cankisore relief gel by GUM but is is hard to use on your tongue and only gives temporary relief I am not so sure food allergies aren't linked in my case. The latest bout was mostly on the tip of my tongue, but usually it is further back on the sides and sometimes I have a sort of uncomfortable sensation in my throat after eating. I have not been tested yet for foods and I am starting to have some suspicions. I have many other health problems that may or may not be linked to the EM and some have, of could have an autoimmune basis and allergies are autoimmune related. I am starting to be more conscious of what I am eating and how that might act as a trigger for pain. One of the health problems I have is Interstitial Cystitis, and I recently read a case of a man with this disease who discovered he had many, many food allergies which were worsening his pain and inflammation.Doctors are a problem for me as I have state insurance so I am trying to figure out what kind od Dr to see for food allergy testing. I also have chronic Gastro Esaphagel Reflex Disease and a pharmicist told me she gets a sore tongue from hers and has had to have cortisone shots to relieve it! I am not convinced that it is acid I am leaning more to the food allergies or the EM. I also get severe pain in and around my eyes which I am sure is the EM. Anyway keep me posted on your status- maybe consider the food allergy route and I certainly wish you good health and freedom from all pain in this holiday season. all theh best, Leah
lauraflora1 said:
Hi, that sounds horrible, I haven't experienced anything like it and hope that you find something to ease the flares. Not easy to stick your tongue out to cool it down.!
Take care
Laura
Hi Laura, thanks for your kind words of support- yeh it really is awful- but I have so much pain everywhere most of the time,(like so many of us unfortunately)..
that it does not phase me in the least when it comes in a new form to a different body part.
I am certain may of us have not yet been fully and or accuarately diagnosed and it is a matter of time maybe years down the road til many os us have complete asnswers for all that ails us. Wishing you good health (and all our members, ) in the holiday season, Leah
Leah said:
lauraflora1 said:Hi, that sounds horrible, I haven't experienced anything like it and hope that you find something to ease the flares. Not easy to stick your tongue out to cool it down.!
Take care
Laura
Hi Leah. I too am sorry it took so long to write back. I usually get an alert in my email if someone answers one of my postings. I didn’t get one but I got one now regarding your response to Laura. Funny. Yes defiantly check out the food allergy route. I have great insurance and my neurologist recommended me to a nutritionist they work with hoping that would make some difference but unfortunately there was no evidence of any foods that make me worse. I did a full elimination diet over about a 3-4 month period. I did it with her guidance but you could probably find enough on line to do it yourself if insurance coverage is a problem. I basically omitted every food from the I think 12 food types that are known for causing food allergies or sensitivities. It’s been a couple of years but I only ate organic chicken or turkey. No red meat of seafood. No alcohol ( yes that does make me worse but I knew that already!) no coffee not even decaf. There is a coffee substitute I was allowed made of some sort of root or something I’m sorry I can’t remember. It wasn’t very good anyway so your not really missing out! No gluten, no sugar, no eggs,no dairy, certain veggies known to increase inflamation such as tomato but there are more on that list. I couldn’t have most oils but I could have saffolla oil. I found a lot of decent things in the health food store such as waffle mix with no gluten dairy or anything else on the list and for sweetener you can use molasses. Any way you can find recipes and tips online for foods you can eat. After 6 weeks of avoing all forbidden foods you introduce them back one type at a time. Each one you introduce you eat something from that group 3 times a day for 3 days in a row along with those foods you have been allowed to eat. Some doctors say if after 3 days you don’t have increased symptoms you can leave them in but others say to take them out again. 3 more days with only the allowed food then you introduce another type of omitted food same thing. 3 times a day 3 days. Some foods could take up to 3 days for you to react to them. Keep doing that until you have tested all foods that can be causing problems. Not all people will notice any significant improvement. You have to have some sort of allergy or sensativity to begin with. I did loose about25 pounds though so that was great! It is very difficult for the first few weeks but you do get used to it and it’s not that bad. I was lucky to have my husbands support and he would only eat what I could in the house but what he wanted to out of my sight. 
his one thing he could eat infront of me was black licorice because I can’t stand that anyway. If you decide to do this let me know and I will see if I can dig up any recipes I had that I thought where pretty tasty. I know what you mean when you said in the grand scheme of things the tongue thing is just another thing. If it’s your tongue ,hands ,feet or any other part of your body. It’s all the same. I know it’s silly but if I have to have pain I would rather it be my tongue that keeps me from eating any more than I have to because the weight loss is at least some sort of prize for my suffering. I don’t know of anything good that comes out of any of my other pains! Take care I hope you figure something out.
Happy holidays to you and your family.
Alina.
Leah said:
Hi Alina, thanks for your reply. I am sorry for the delayed response but having some technical problems here. I will look into that Magic Mouthwash stuff. I have tried the Cankisore relief gel by GUM but is is hard to use on your tongue and only gives temporary relief I am not so sure food allergies aren’t linked in my case. The latest bout was mostly on the tip of my tongue, but usually it is further back on the sides and sometimes I have a sort of uncomfortable sensation in my throat after eating. I have not been tested yet for foods and I am starting to have some suspicions. I have many other health problems that may or may not be linked to the EM and some have, of could have an autoimmune basis and allergies are autoimmune related. I am starting to be more conscious of what I am eating and how that might act as a trigger for pain. One of the health problems I have is Interstitial Cystitis, and I recently read a case of a man with this disease who discovered he had many, many food allergies which were worsening his pain and inflammation.Doctors are a problem for me as I have state insurance so I am trying to figure out what kind od Dr to see for food allergy testing. I also have chronic Gastro Esaphagel Reflex Disease and a pharmicist told me she gets a sore tongue from hers and has had to have cortisone shots to relieve it! I am not convinced that it is acid I am leaning more to the food allergies or the EM. I also get severe pain in and around my eyes which I am sure is the EM. Anyway keep me posted on your status- maybe consider the food allergy route and I certainly wish you good health and freedom from all pain in this holiday season. all theh best, Leah
Hi Alina, thank you so much for your generous reply. I was hoping I wouldn't have to go the food elimination route and do bloodwork instead. I am noticing kind of immediate reactions lately after I eat certain foods,( especially soy), and grains, oats and maybe eggs which I eat a lot of(only the whites) because of high cholesteral. I haven't eaten beef in probably 20 years, very little high quality chicken and turkey in recent years, and over the past year I have been transitioning to vegetarian/veganism. I am an animal welfare proponent, but I do still eat responsibly farmed salmon(whole foods only) and sardines, and humane certified egg whites. I try not to eat too much soy because I don't feel it is a very healthy food,( especially for those with endocrine/ thyroid/ breast cancer genetic issues,(we have the brachya gene in my family) - I also have hashimotos hypothyroidism. It is all a lot to deal with as brown rice is also something you cant eat too much of because of the arsenic problem, and I have a lot of gastro intestinal problems which are effected adversely by too much fiber. My weight is also very low -has been for quite some time and I really cant afford to lose much more at this point. My bloodwork is quite wacky but the Drs. don't seem to know quite what to make of it,(my creatine kinase is 5 times what it should be which measures muscle damage (heart,brain or skeletal) and my liver enzymes are elevated as well as my calcium level. Oh well- I am not in a crisis at this moment very philosophical about it all right now- but I do feel the food allergy is something I need to investigate at this moment- I do have chronic intermittent asthma and sinusitis, and this morning had itchy throat, coughing, some wheezing and chest tightness and the TONGUE THING shortly after breakfast. Enough about me... I admire your sense of humor-good for you! that is so essential in life,
again all the best to you and yours
Thank you Leah. My sense of humor is one of the best medicines I have! It’s good you seem to already notice a connection to certain foods. It’s a bummer if it is something you really like to eat but worth it if thee is something you can do to stop any of the pain. I am sorry you are struggling with your weight. I know a lot of people don’t understand or have sympathy when it comes to people struggling from not enough weight. No problem getting understanding on struggles with too much weight! I too have a lot of gastrointestinal problems. About twice a year I fluctuate 20-30 pounds. I will go through 2-3 months where I am so nauseous I can. Barely eat anything and I loose 20-30 pounds during this time then I gradually get better then I’m able to eat again. I usually put most but not all back on in the next 5 or6 months then it happens again m this has been happening the last 3 years. They think it might be caused by slow digestion. I had the test done where I eat radioactive eggs they can ex ray you every hour to see how you digest you food and mine was slow. I don’t know why it tends to get better and worse though. The slow digestion is typically linked to your autonomic system. This is caused by nerve malfunction so I wouldn’t be surprised if it is related to the EM with this being caused by a neurological disorder. The million dollar question is why are the nerves malfunctioning? Interesting you describe your blood work as wacky. That is the best way I could describe mine as well. Things will come back abnormal but they just say those don’t really mean anything we were looking into blah blah and that is normal so there is nothing wrong! They may say that’s weird but it’s not a problem. I don’t know why they test for things if they don’t care about the outcome. I hope you are well ( as well as can be 
take care.
Alina