Every single day I get horrible facial swelling. I also have debilitating fatigue and I am not sure if the two things are connected. I have been to every doctor you can imagine but no one can figure out what is causing the swelling in my face. I am so sick of it because it has been going on for about a year now. It makes me so self conscious and I just wish that my face would go back to the way it used to be. If anyone has any ideas at all about what is going on then some feedback would be greatly appreciated. I am really at the end of my rope with the fatigue and constant swelling.
This is for Kaatttteee who wrote regarding facial swelling and fatigue. You may possibly be suffering with CELIAC DISEASE. My daughter was suffering with your symptoms, but no doctor would take her problems seriously. INSIST upon a blood test for CELIAC DISEASE. Good luck.
I have two daughters ages 10 and 15, who have been suffering from non-pitting swelling in the face, jaw, tongue (in/out side mouth) with drooling, breast, hands, legs, behind knees and feet. This has been going on for a few years now with no diagnoises. All routine lab and common illness were negative. The swelling occurs daily and comes and goes for no apparent reason, even at bedtime. I have gone to every specialist that the doctors thought could help including a visit to Cleveland Clinic who checked for T.A.R.P.S. and Muckle-Wells Syndrome, tests are negative. The pediatrician believed this to be Hereditary Angioedema because my sisters oldest daughter who is a twin has similiar symptoms with no found diagnois; the test was negative. The doctors have been treating all three with allergy medicines and steroids that do not help, with no response to Epipen. The 15 year old has an IgE of 601 with no found allergies, has Asthma and Ezema with a low C1q compliment level. The 10 year old has not been able to attend school regularly due to the nature of the swelling, inability to walk, talk or use her hands. She has an IgE of 320 with allergies to mold, grass and rye, has Asthma and Ezema with low C1q compliment levels. Other symptoms include; abdominal pain, headaches, dizziness, fatigue, nausea, vomitting, itching with no rash, no fever but insist she is very hot and completely undressess, shakes and feels as if there is something crawling on her, personality changes to more humbling during episodes, doesn't remember what happened and usually responds to question as "I don't know" instead of given an opinion like she would normally and she sleeps alot. They both swell in their sleep even if they are not swollen prior to going to bed. So far we know what it's not, if anyone has a thought of what this might be or is experiencing this problem please let us know. Best Wishes and good health to all!!
I too am like this, i have a full left sided swelling and the doctors despite many tests are unable to tell me what it is, i too was tested for heredatory angiooedma. I have been like this for 2 years im exhausted all the time and suffer from debilatating headaches, i have seen genetecists, rheumatologists, neurologists and they are all stumped, I am now waiting to be seen by the immunology team. I will let you know how i get on
Hi guys. I just was looking this up randomly because I recently started a gluten free diet. I had very similar symptoms to one of your daughters but my symptoms specifically were incredible malaise "brain fog," chronic fatigue despite hours of sleep, joint pain, think a bit of facial swelling but not dramatic, acne, itchy hands, constantly hungry, headaches, etc. Every day on this no gluten diet I feel better and better. I would definitely look into gluten intolerance. Its very common yet covered up because the only cure is non-medicinal and pharmaceutical companies have no financial backing of something believed to be incurable. Currently the remedy is to abstain from a gluten free diet. You may think it sounds overwhelming but it is not, WHOLE FOODS is heaven for me now I would really it, life changing, especially when you, like me, sound like you have exhausted all other possibilities. Best, best, best of luck!
Thanks for letting us know about this. Both my daughters have tried the gluten free diet as well as an all body cleansing inside/outside with all natural substances. They felt like my husband and I were mistreating them. We have been taking them through trying everything to help with this problem as it continues to plague them but still no found treatment to relieve the symptoms or known diagnosis.
I wake up every morning with a puffy face and very swollen eyelids (upper and lower). I have also suffered from chronic fatigue. I recently found I have celiac disease and I am hoping these symptoms go away after some time on a gluten-free diet. I have already noticed a big improvement
i have just been diagnosed with asthma, very annoying. just when my life is starting i have to deal with me. just you all do not give up.
please please try Butekyo breathing techniques, it helps very much
go online and search for it.
try to google Butekyo breathing centres, you may find the nearest centre, that the investment you wull never regret in your life, just require time and dedication.
Hi TrueBlue 71
My sister has symptoms very similar to what you have described. She has persistent swelling of the face and neck region, abdominal pain, fatigue, headaches. She has had several "angioedemic style" attacks which have affected her breathing and she has to be rushed to hospital as soon as this occurs. She doesn't seem to respond well to adranelane epipens like others who have similar attacks. Funnily her personality does change just like you have mentioned, she is a lot more snappy, cranky and has less time for talk around the time of her attacks. Just wondering did you ever get a full diagnosis for your daughters. At the moment doctors still disagree over my sisters condition. Some believe it is hereditary angioedema whilst others believe it is epilepsy, anaphylaxis, coeliac etc. Very frustrating!
TrueBlue71 and others with similar symptoms: My heart goes out to you. I know how difficult something like this is. My 15 yr old daughter suffers from all of the symptoms you have mentioned for 1 1/2 years now:
abdominal pain and swelling, sore throats, headaches, dizziness, fatigue, nausea, vomitting, itching with no rash, no fever but insist she is very hot,weight gain, twiches at times, can't concentrate. She has jaw, throat, cheek, and tongue swelling every day with pain. We to have been to multiple specialists without a concrete diagnosis. She has been unable to attend school for a year now. This all started with a virus they suspected to be Mono which she has never fully recovered from. Please let me know if you find anything out or would like to chat more.