i’m in alberta canada. 40yr old woman. had flares from age nine and a neurologist dismissed it as migraines. they seemed to subside and almost thought i grew out of them. until… diagnosed with raynauds 4 years ago and this past year the flares have returned and are unrelentless. what used to be just an evening burn has now become me waking up with burning knees and cheeks. feet and hands go on and off daytime with late afternoon to evening burning of my face, ears and knees
first derm said i should be checked for carcinoids transfered me to an internist. test came back neg and transferred me to a different derm. having lip biopsy thursday as internist expects sjorgrens.
on 3o mg of adalat with no relief.
lidocaine gel is useless as is aspirin (which has sparked an ulcer).
the burning is debilitating and utterly emberrassing and painful
Sorry to read what you are going through. I hope you keep us posted on the biopsy results.
I also have facial involvement. I was wondering if you still have migraines? When I used to be on birth control, I would tend to get massive migraines + burning face together when taking the first placebo. (Both have improved some by getting off of birth control.)
Actually, taking imitrex would help with both the migraine + burning face.
Curious if the adalat made things worse or just did nothing?
i actually never had migraines. when i was a child the neurologist that i saw had no other conclusion when he saw my facial/ear flushing.
i have some tinitinitis now and chronic bloodshot eye but i’m not sure if they are related to the flushing.
i haven’t noticed any difference since starting the adalat 3 weeks ago. perhaps my raynauds would be worse if i wasn’t taken it i’m not sure. i usually end up with open ulcers on my fingers and toes each winter from raynauds… perhaps the adalat will prevent that
but as far as preventing flushing… the adalat has been no help. (i was hoping the bad burning was just a over reaction to the raynauds). i do notice i feel light headed when using stairs tho… gotta be careful! i think i actually feel the reduced blood pressure.
Good luck on the effexor! I’m actually on effexor (almost a year) now, but no anti-depressant seems to make a dent for me. Everyone’s so different, and I wonder why some people respond / do not respond to them in the context of EM.
I’ve started recently with CBD oil … not sure if I notice a difference yet.
Too bad the adalat didn’t help with the EM symptoms.
please try to rule out lyme disease/coinfections as root cause, they will try to dissuade you form this but it can cause em.raynuds tinnititis, so many symptoms, known as “the great imitator” there are discussions here you can look them up, testing is often faulty
thanks for the lyme suggestion.
i brought it up to my gp years ago and well, he basically thought of me as a hypochondriac … and crazy
so… effexor… was awful. just 4 days of it. shakes. tremor. nausea. jittery. irritable.
i asked my pharmacist if the side effects would pass. she looked at me worried as i was visibly shaking
looked up my chart and concluded i was having symptoms of seretonine syndrome. sure enough there were drug interactions
don’t know why the derm gave me a script for effexor since it was going to interact with my current meds
Very very very disappointed. i felt sick and crazy all weekend long…on top of that, flares and burns were constant.
how do i trust this doctor now?!?
Cherry,
So sorry to here your struggle like others of us in the same boat it seems to be a very frustrating roller coaster of dr. I’m glad you found one that could give u a diagnosis unlike myself I’m still waiting, i hope after the holidays to meet with a derm out here and fingers crossed can help me find a diagnosis also. I was diagnosed with Raynaud’s from the vascular doctor and then dismissed with nothing but follow up in a year real helpful guy thanks lol. I was put on nifidaphine and it was so horrible my skin was burning from head to toe so bad i could feel the heat threw my pants i finally went to the ER because it was so bad. anyone with EM i dnt feel like this is a good drug it made my flare 100% worse. Maybe i will ask about Effexor also when I see the doctor. Please let us know how the new meds work I would love to hear. take care and happy holidays
i thought i would be relieved when i finally got a diagnosis. i truly did. unfortunately it’s just left with me with a low mood since doctors are still so baffled by this.
the derm who gave me the diagnosis acts as if i am complaining about acne or some benign rash. he fails to understand how painful and life altering this is. he offers me fist bumps as i sit in tears.
my primary care physician seems more sympathetic however he has thrown his hands up and urged me to pusue out of country care at the mayo clinic. reading here however i fail to see why i should even fight my way there
if they had made any strides it would be well known via the internet by now.
Don’t be hesitant to call out your doctors to their face. They won’t know they’re wrong until you tell them. Before I was diagnosed and found treatment, a physician once told me my symptoms were all part of the aging process. I took sharp exception to that and immediately interrupted, “the aging process is gradual; it’s not a cliff dive!” After thundering he was wasting my time, I walked out. There was no use sitting there, listening to his nonsense.
You’ve got to fight for yourself. That includes sometimes even having to fight the people who are supposed to be there to help you. Not every doctor is a good doctor.
Chrisr99: No, I got some CBD oil (no THC) and went through 2 bottles with no effect. I was hoping it would help with the pain. Maybe I needed a higher dose than the one recommended… Not sure. Lyrica + topical analgesics work much better for me.
Cherry: For whatever reason, ketamine on my face made it burn quite badly. I have tried many creams with ketamine, amitriptyline and flurbiprofen (NSAID) – or some subset of these – with varying strengths. After talking to the compounding pharm, he said ketamine was the culprit and I think he was right. I can handle creams containing ketamine 0.5% on my face but no more. (Ketamine 10% was not a fun experiment) I am also fine with an amitriptyline 10% (though it makes me fatigued) and flurbiprofen 1% and think this combo is best for my face. (Hands better able to tolerate ketamine). Good luck!
derm gave me bromamine cream which just made my flushing 1000000xs worse because of a rebound effect (i learned here). how disheartening to be faithfully lathering stuff on my face only to be making myself worse!!
don’t know much about ketamine but i will try it on my knees first!!
