A suggestion--have yourself tested for Mast Cell Activation Syndrome (MCAD/MCAS). You can also get checked for Mastocytosis if you'd like, but I am more thinking and talking about MCAS/MCAD. It is the body's inability to properly regulate mast cells, and mast cell degranulation leads to a lot of these red hot painful burning issues. I know, because I have them too, my ears and my face. I am 49, but it is not perimenopause because I have had these episodes off and on since I was 10 years old. But. I have now had extended periods of burning ears and flushed face since fall 2016. It is almost continuous. It is only now, when I have had the symptoms last and persist, that I am following up and persisting with trying to get a diagnosis. I had surgery in Nov 2016, and not knowing about a mast cell issue, I am been in agony with a lot of other symptoms 9 months afterward BECAUSE I didn't have any presurgery stuff done.
That is why it is IMPERATIVE that a diagnosis is pursued and acquired. I am at this point petrified of every having another surgery in my life!
I also suffer from petechiae on my feet and lower legs since 4-5 years ago. Another lady on a mast cell page in Facebook I know said she has the same thing, has had it for 30 years. She saw Dr. Lawrence Afrin--a leading oncologist/hematolgist on mast cell disorders--who told her it was mast cell degranulation having to do with hepacin.
Be aware, though, if you decide to go down this road and check for mast cell issues. Hardly any doctors know about this, and it is extremely difficult to get a diagnosis because it is difficult to get an accurate reading on all the different types of mast cell histamines in the body. First, because most labs usually don't handle the specimens correctly, and second, because you usually won't have high enough markers unless you have the test done when you are having an episode/outbreak/hives/ana attack.
Just tossing that out there for those of you who want to follow up on it.
Did anyone figure out what is doing this? I have the same thing, including the ear whooshing.
I have burning round my face neck knees and ankles my GP has run blood tests and all have come back negative he states no inflammation round joints it seems to be when I wake then goes off in the day but then ankles become very hot in the evening
I have burning round my face neck knees and ankles my GP has run blood tests and all have come back negative he states no inflammation round joints it seems to be when I wake then goes off in the day but then ankles become very hot in the evening
It has been a while since your first post but I have something very similar to what you described. It started that at random times my face, ears, elbows and knees would turn bright red and burn like I was in the direct sun for 20 hours. It lasts for about 45 minutes and when it goes away there is no sign that anything happened. I have been to many doctors and no one can figure it out. This has progressed to happen daily now and the redness covers my entire face, my arm from my fingers to my shoulder, and my toes up to and including my butt cheeks. The pain is so intense that it feels like my skin is about to bubble and peel off my body. It still only lasts 45 minutes but is is 45 of complete torture! There is no redness on my torso at this point but I am sure that it is just a matter of time.
I really need guidance!
Didn't sign my last post, so am reposting. My flush is amazingly identical to yours including knees and elbows, which is very rare. I think mine is carcinoid syndrome, specifically foregut because all have lasted at least 40 mintues. Is your flush dry like mine? If not, yours can be menopause because of your age. I also have aches and pains -- seemingly muscles, not joints. All blood/urine tests and octreotide scan are negative, so experts say it's not carcinoid, but each test is far from 100% sensitive, therefore not 100% accurate. You don't mention seeing doctors, having tests, etc. If you have had tests, I'd be interested to know which and what the results were. If your flush is dry, not sweaty, I suggest seeing a carcinoid specialist, or at least mentioning carcinoid syndrome to your primary dr. or endocrinologist because carcinoid is quite rare and many doctors don't think of it as a possibility. I hope to hear from you soon.
Lori637
Hi,
How are you? Are there other symptoms present? What tests were done? And what medications are you taking? Pardon for the many questions, but to be able to understand what could be causing the flushing of your face and neck, your medical history is essential. I do understand how it feels to not knowing what is happening. But hang on, and try not to lose hope. Take care and hope to hear from you soon.
hello everyone i have had flushing of the face neck and ears and it burns like ive been in the sun for weeks it stays this way ive been to all thedoctors in the world and have had many test but knowone can tell me anything it is very hard anymore to go out in public because the way i look does anyone have any advice
Hi Marsha,
It is good that you were able to see your doctor. Were you able to have antibody testing for celiac disease? Celiac disease is difficult to diagnose because it resembles several other conditions that can cause malabsorption. Intestinal biopsy really needs to be done for confirmation of the disease. Aside from malnutrition, complications that have been associated with this condition include neurological complications such as nerve damage (peripheral neuropathy). This is worth further evaluation especially with your symptoms of muscle stiffness and tendonitis. It would be helpful to discuss this with your doctor to rule this out. Do keep us posted with your blood work. Take care always.
Thanks for replying to my post. I saw my dr this week. Since I told him I had also had an episode where my vision was a bit zig zaggy around the perimeter, he said that is classic migraine symptom and he said it has to do with the blood vessels and blood flow. So with the crazy flushing symptoms that I have that are different from the menopause hot flashes, the whooshing in my ear and this episode of zig zaggy vision, and the tendonitis, he decided to run a blood a test to look for inflammatory markers in my blood. He said if anything shows up, it will give him a cue to do some other testing to find out why I am having an inflammatory response. He said if inflammatory markers show up in the blood work, it indicates that there is an underlying disease process that is causing it.
I wonder, could celiac disease cause this? I was never tested with the "gold standard" intestinal biopsy, but I have many of the symptoms of long standing celiac disease, such as severe osteoporosis. Before I went gluten free I was often getting the burning, blistering rash on the back of neck that I've read can be common with celiac. I had lots of canker sores in my mouth that finally went away when I cut gluten out of my diet.
Even though I have been gluten free for almost five years, could long standing malnutrition be causing me some of the muscle stiffness and tendonitis that I have?
I just wonder about a lot and how much long-standing nutritional deficits play into this even though now I am gluten free and taking supplements to boost my nutrition.
It should be interesting to see if the blood work actually comes up with anything.
Marsha
Hi,
How are you? What other medical condition do you have? You are right in saying that menopause can cause of a red, hot, burning face in women iA hot flash is a sensation of intense warmth in the body that may last for a few minutes. This is called a vasomotor flush. It is seen as redness starting in the chest and neck area, and then rising to cover the face.Aside from flushing, other signs and symptoms of menopause or perimenopause include: irregular periods, sleep disturbances, mood swings, and thinning hair. If it persists, have this evaluated by your doctor for proper management.