Well I have so far scene pcp, who sent me to rheum who sent me to derm who sent me to vascular were they listened and ran some test but say its raynauds and to see them in a year. I went to neuro today he says yes I have heard of EM but there is nothing for it and that’s not my area basically see a rheum so now I have gone full circle around and yet no one knows anything except to call it Raynaud’s only while yes I get cold I’m worse with the heat it feels like my hands and other parts of my body during a flare are in an oven and swollen where I cant make a fist and veins are budging and cant sleep and yet they send you out the door and have nothing helpful to say. neuro says that’s not my area ok well whos is it and who here in Arizona can help me find some answers other than the mayo clinic that I would love to go to only insurance doesn’t cover ugh feeling just alone with this so I came here to this group to at least vent with others who understand what it’s like.
This is the right place to come at least to not feel alone. I came to visit my mom today and we just had this vent to each other… Looking at her feet/legs and how her EM is progressing and how her doctors are of no help and so far each specialist she has seen and been recommended to specifically for EM is a dead-end. Her dermatologist (since she has had melanoma twice she gets skin checks frequently) literally told her to stop mentioning the EM… I mean wow. I know it’s rare and hard to treat or treat at all… But it is so frustrating when you seek help and can’t find it… If I was a doctor I’d tell my patient I would research it and send them to someone I would find who could help, not just send people home and do nothing else about it. I have found some interesting info on this site, my best advice don’t give up, when my mom is fed up from compassionless doctors visits we just take a break and then keep looking.
I am sorry to read this, it sounds frustrating. I am not sure if you saw this but just in case
starting pg 5-6 it lists various EM treatments. Cohen has written other helpful things too… apologies if you already have read such things.
If you can find a doctor who can help you figure out WHAT CAUSES your flares, I mean that is the ideal of course…
for me, I am lucky to have found very good docs (that was a LONG process, many dead-ends, as it sounds you are going thru now! so sorry!) but really they don’t know why I have my flares, we just started trialling drugs (everything I’ve tried is mentioned by Cohen somewhere). I mean really the trialling process was pretty random. A few times I’ve asked my doctors if I could try a particular drug outright that I’ve read about.
One thing that changed the game for me was having a close friend/family member actually COME WITH ME to the appts. Somehow I think this makes doctors less inclined to walk out without anything productive happening, and speaks louder to them than pics. Obviously, this shouldn’t be necessary, but rarely do doctors feel any responsibility I’ve found
I wonder if you are on / have been given any med for the “raynauds”. I know the EM is worse, but sometimes raynaud’s meds (like calcium channel blockers) can actually treat the EM. So, trying to help the raynauds (which it sounds like docs acknowledge) might be a place to start for the EM maybe while trying to get a diagnosis in the meantime??? just my thought … I am a little biased since calcium channel blockers seem to be helping me right now (I have raynaud’s but I barely notice it really). Tbc, I’m not recommending any drug, but suggesting you ask a doc about what to do with the raynaud’s.
It sounds like you are very strong. Hang in there. It’s a good think I think that you can recognize the absurdity of the way doctors can handle patients like hot potatoes – bc you know you deserve good medical treatment. … but It sucks not to be heard by drs. Like, I’ve gone to a dr, explaining my flares, that I think it is EM, etc, and they just scratch their heads and say “huh. interesting. Dunno anything about that. You want to talk about anything else?” So I’m sending you a virtual hug as you deal with this !!
Wow I mean how can a dr whos supposed to help people tell someone in obv pain stop talking about EM like just because your not aware of what to do for it doesn’t mean your pt isn’t suffering with it. It’s crazy how people treat people I just dnt understand it. I’m so sorry to hear about your mom I hope they find something that will help to ease her pain. She sounds like she’s been threw a lot but will not get knocked down for long before up and fighting again. Wish people had more compassion seems like those dr are few and far between now its more about money and business than people they would rather take your copay and then give you no help and send you on your way
Thank you for the site I have read some of Cohens stuff on the internet I will check out this site again for sure though. They tried to control my ranyauds with Nifidipine but that was horriable skin began to burn to the point I indid up in the hospital. They finally got it to calm down some but said the meds would have to wear off from my system and that could be days. It was about 2 months when my pcp wanted me to try it again the lowest dose this time so I did again skin was burning I could feel the heat threw my clothes it was terrible so not sure what else they can do for it they didn’t even say anything at the vascular dr except try to keep warm I was like wow well that’s helpful people just dnt have any real answers I keep finding. My mom has Raynaud’s really bad her hands turn death white mine dnt they get pretty cold but never look like hers do and hers never look like mine do when there burning hot so is it really Raynaud’s?? Or did they just say that because they had no other explanation who knows. When my hands are burning it helps to put them above my head I can feel the blood drain down and give relief only I cant walk around with my hands up in the air all the time lol. But soon as I put them back down it goes rushing back. I haven’t tried bringing anyone with me to the dr before but your right that might help them to not just blow me off. I guess it’s back to the start again I will have to go see my PCP and decide where to go next. I looked on the EM site for dr in the area who know and treat this but there was only on that even came up in Arizona its a dermatologist so maybe that will be where I head next.
Arizona, try the Mayo clinic I believe they have an office in Phoenix.
Hi, did you go to see Dr. Mackey? He is my dermatologist who diagnosed my EM.
I totally understand your frustration, the doctors that have heard about Erythromelalgia do not know what to do and the others sweep it under the rug because they have no idea.
I’m fortunate to be living near Duke hospital where there are doctors who have heard about, and some used to see patients with Erythromelalgia. Unfortunately, it is a rare disorder so no one keeps up with technology.
Finding EM warriors was one of the best things that could have happened for me. Here, you don’t have to feel alone. So, welcome to the group, I’m sure you will find this a place of understanding.
Although I did get acknowledgement after many doctors and many tests, the best medical assistance came from not a neurologist or dermatologist or vascular specialist but from a pain management doctor. He treated the symptoms instead of looking for a cure. Once I was diagnosed with small fiber neuropathy it seemed to open more doors. The neurologists don’t always treat EM but will treat SFN more often. The pain Doctor is more interested in increasing your ability to function. If you can get a referral to one you might try that while you’re searching for a diagnosis.
Is it Vernon Mackey on thunderbird? I’m gonna call my pcp and see if they can send a referral.
Yes that’s him, I hope he helps you too
Don’t let people treat you like that! A dermatologist once pulled a stunt like that with me. I filed a complaint with my HMO, got my money refunded for the office visit, and threatened if they didn’t make a concerted effort to help me I would go public. I name dropped a friend who is a television news anchor and said I would create an avalanche of bad press for them. After that I got results.
Never let anyone whose salary you are paying disrespect you. When someone wrongs you like that, you go to war.
I am glad I found the group to it’s already helped me since speaking with so many of you that are in the same boat, it’s nice to know your not going crazy or the only one out there dealing with similar problems. Chrisr99 mentioned a dr V. Mackey so Monday I’m going to see if my pcp will send a referral over to him hopefully this will be the guy who hears me.