This is my second post but now i have been officially diagnosed by a John Hopkins vascular specialist about a month ago. A little background: I am a 22 year old male with elevated liver enzymes, luekopenia, thrombocytopenia, raynauds, IBS (turned out i had SIBO since then things have gotten better), low pulse, and low body temp (average around 96.8oF). All of my problem started about 4 years ago and have progressed since. Interestingly i was looking at childhood pictures and some of them i had a flushed face and hands. My flushing mainly occurs in the hands and feet but worse of all I am a rare bunch of those with facial EM on cheeks, nose, and newly forehead (the pictures make it look much better, also 2 derms so no to rosacea). Having that and acne is the worst! I attached some pictures so yall can see. Does anyone have chest/knee flushing as well? When in direct heat or working out i get severely blotchy chest,knees, and shoulders.
Doctors are started to suspect some form of autonomic dysfunction because i am intolerant to heat or cold (i will get shivers then have massive rebound flush), low body temp, I do not sweat at all unless on a 20+min run, gastro problems, etc. Any input of to this theory?
And finally, I started gabapentin at a small dose (100mg x 3 a day) and that didnt do much so we slowly increased it and then i noticed my facial burning becoming more constant as well as hives on my knees and arms. We decided to discontinue it. My general question is what are some of the best medications you guys have used? I am really interested in effexor and lyrica.
My knees and fingers and toes are never not red–it’s just a matter of degree. My ears and cheeks sometimes flare, often bilaterally. Also any scars on my shins turn really red/pink. My toes get the brunt of my EM–the swelling is insane and the color goes from red to purple to darker purple–horrible and so painful.
I am soooo sorry you have all this going on. You are too young to be dealing with this. The topical cream that Mayo uses has helped a lot for my feet. My doctor has it compounded. The Mayo version is Not cheap but works well. It is just ketamine and amitriptolene. I will send you a picture of 3 different formulations on friday. I am out-of-town until then. Hang in there!
Robyn
Monkey i know exactly what you mean by the scars, i have one on my knee from a 3 year old turf burn and another from breaking in a shoe and those things are always red and turn purple when my feet/lower leg flushes. Robyn thanks for your input, this condition sucks so bad but i know there is other people out there with it worse so i try not to complain to much. At least now i know what im dealing with in regards to the flushing.
I just started on 75mg of Lyrica a day and if there is no benefit, my doctor is going to bump me up to 150mg a day. Hoping it works, if not probably onto effexor or cymbalta.
Hi Theodore,
Tough for you to be a young adult & grappling to get your variety of health issues under some control. From what you’ve written seems like you have been exceptionally proactive in learning to understand and best manage your health.
My first 2 years were very difficult. With a lot of work, much trial & error, thing are greatly improved now. We EM folks all vary in our “comorbid conditions” & thus the solutions. Insights can be derived from sharing our personal odysseys.
Autonomic dysfunction has been a key aspect of my diseases processes. When my health initially rapidly declined in 2011 intolerance to cold was most severe. I would not get goose bumps. In the rare occasion that I would shiver they would be a sort of a large body shaking type. Full EM flares gradually began emerging over the following 6 months. During that phase my body’s ability to cool diminished to its current near total loss of sweating state. Strangely it was an early January 2012 that my EM fully emerged with multiple autonomic nervous system dysfunction. From January to March 2012 everything went haywire: low BP & pulse, trouble with gut & bladder function, apnea, etc. EM flares, mostly on feet & hands, went from sporadic to lasting most of the time. When them EM began involving my entire leg, worst at the knees, my ability to walk was severely compromised. I went from occasionally needing a cane to requiring a wheel chair. By mid June I was essentially bed bound.
Fast forward 4+ years. EM & an assortment of health issues continue as routine health challenges. I can do a near normal life within specific “parameters.” Most of my unique life style adjustments relate to bread & butter EM triggers (heat, prolonged standing/exertion.) I down hill ski, kayak, take nature walks. At the gym I lift weights & swim. I take yoga, pilates and water aerobics. At 52, given the ordeal I went through, not too shabby.
Keep working it. Develop a program tailored to your specific needs. Take heart in knowing how many EM people around the world are with you. My moto: Perseverance!
Christine (AKA: Elis)
Very interesting, I am sorry you have to deal with this as well. I do tailor my lifestyle very much so to my condition but it is too much now I barely can do anything that wont caused a flush because of the reaction to both the heat and cold. I did a lot of reading and saw that EM can actually be caused by vasoconstriction problems and poor blood flow which almost seem counter intuitive considering the hot flushes are caused by heat and lead to excess burning/blood flow. Since i am completely intolerant to the cold (raynauds phenomena) and rebound flushing is a huge problem for me I am going to try a calcium channel blocker like nifidepine or diltiazem.
no not yet. Looking at those pictures now they dont really capture what my actual flush looks like. My feet and hands get way more red than the above pictures. My face and chest flush purple with some uniformity but with patches aswell. I got blood results showing high histamine. I am seeing an endocrinologist and allergy specialist shortly. Its most likely indolent mastocytosis or a rare foregut carcinoid. My whole body has a red hue now and it affects more than my limbs so my erythromelalgia is most likely secondary. Antihistamines help a little but not too much (take Zantac + Zyrtec daily). Feel free to message me,
I haven’t checked in to this site in the last couple of weeks, and was sorry to hear that you are dealing with so much. I recently read the Afrin article (I think it is on this site) and I got his book on Mast Cell Activation syndrome, called Never Bet Against Occam’s Razor (Kindle). I have a medical background, and I like doing research on my EM condition. In reading Afrin I am starting to have those Ah-Ha moments which tell me, that in my personal health understanding, I probably have a mast cell activation issue that is one of the strings that ties most directly to the EM. So all I can offer you is a book suggestion and my support for your finding a way to work with this disorder.
No worries, Im still moving along. Looking at those pictures is kind of funny because I look good in them compared to the flushes I get now. I got fully checked up for Mast Cell Activation Syndrome and everything came back. I went on a full drug regime to see if it would help from my docs (antihistamine type1 & 2, Singulair, etc) and nothing helped. Recently got a bone marrow biopsy and it came back hypocellular and my white blood cells dropped a little more. So I think the whole EM problem is related to paraneoplastic syndrome, EM precedes various forms of cancers and diseases by 3-6 years.The docs are sending me to some NIH people so I think i will be alright in the long run, definitely will get answers soon!
From what Ive seen on the website, EM is somewhat of a blanket term unless of course you have primary EM caused by the gene mutation. A lot of us have similar yet very different symptoms (some dont have any other symptoms while others like me do with multiple blood irregularities) so its all about figuring out what is wrong with you at an individual level.
Theodore,
Thanks for the update. Please do let me know what they find out, if that is ok with you…I have been actively trying to get followed up on a regular basis with my rhum. testing and hemalogical testing as i agree from the literature that cancers show up years later and vigilance is the only way to go…
I read all your responses here (and in your other thread) and i’m somewhat confused. Why do you think you have cancer? You seem convinced you have some sort of cancer, but what does the evidence say? Is there incontrovertible evidence to suggest you have cancer or soon will?
Hey Carter. The only reason I still suspect any form of cancer is because of my doctor suggesting paraneoplastic syndrome. I have low platelets, chronic neutropenia, and fat malabsorption. My mom passed away from colon cancer and it looks like the Gene mutation she had was rare and possibly familial (working with NIH and they are the one who said that and are currently researching it). I was completely normal and then all of my blood counts drop and started having steatorhhea and then em started. I don’t really have any pain except slight burning. Also my em affects my whole body now not only my extremeties.
