New here

Hi Anne Marie,
Interestingly you mentioned that symptoms started after surgery. Can I ask what part of the body you had surgery.
My symptoms started immediately after a severe ankle sprain where I tore everything in the foot medial lateral and high ankle. I was stuck in a horrible boot for 10 weeks in summer with no weight bearing. My foot had ‘panic attacks’ which I couldn’t explain any other way and had to get it out of the boot asap. I had to modify the boot so I could get my foot out quickly… It was burning so badly. There are others who developed symptoms after injury too. My symptoms have settled a little un the last few weeks but are constant. Luckily its winter here so my feet are usually cold. When I go to bed, it’s all on. I learnt to crochet when I was bedridden -
The new mindfulness.
Nice to meet you and I wish for you relief.
Regards Sharyn

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I have also been told not to use ice, it may give temporary relief but ice and soaking in cold water just does further damage and at least for be causes the flares to be unbearable after I stop using it and my feet warm back up.

I also had my symptoms after a surgery, two ankle surgeries in fact, I was born with no ligaments in my ankles and couldn’t walk without crutches, crutches doesn’t help this pain but I don’t know which was worse, having my bones rub together from no support or have my feet burning!


Hi Anne Marie, gosh I feel you right now, it took me 8 years to be diagnosed and it was only because I found a doctor who was truly fascinated in my condition. My doctor found the specialist I needed through the John Hopkins Hospital in the US where they had a list of professionals globally for EM, I feel I got really lucky with finding out this info. My doctor also did the research for me for this group. I’m only new to this group so I hope I’m not over stepping with this info as I haven’t read everything in this group yet, but this is how I found this group and my specialist. Good luck x :slight_smile:

Hi Stan, I also live in Melbourne and have just been diagnosed. Seems we are a couple of the few people in this city that have this condition. Dr Peter Bloomberg diagnosed me a month ago. I really ,Iike reading your posts. :slight_smile:

Stan, My bad I only just realised you are a doctor, I wish I met you years ago :slight_smile:

ha ha, no prob AshLou… glad you’ve got a diagnosis.
I’m here primarily “in cognito” with EM myself, but it’s hard to sit on the side lines seeing some of the posts especially around medications and my personal interests in education and mindfulness (better termed mind-lessness, as I’m convinced we needlessly go down the rabbit hole by judging the pain, which just magnifies it. But the mind will protest big time to that notion). Just hoping to add some clarification and support when none of us have any easy answers. Carter’s our best resource :slight_smile:
Note to Carter who knows how to stay humble, LOL


In the last 4 weeks my life has changed being diagnosed… just having a diagnosis after years of BS has helped. Finding this group has helped and here I am spending FriYay scrolling through posts and posting myself. As this is so new to me this is actually so uplifting and enlightening, I’m very grateful.

Since I was diagnosed I have only had one episode, which is weird.

I have been prescribed Deralin 40mg. To be honest I was worried, however I took the “red”pill knowing the side effects and I felt like I had 3 Valium and was floating. There is more to what happened but I wouldn’t described it as BAD…

I would like to come a see you, is that possible?

I haven’t come across Carter yet, as I’ve been just reading and posting… Cleary I need to know Carter :joy::joy:

sorry not at this stage. i’m finishing up where I’m based and no new venue sorted. will be o/seas for a while. And not here to solicit patients, that would be a conflict of interest and no doubt prohibited by the rules. Suggest stick with your specialist and GP.
Happy to provide any support online as for anyone here in this community.

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Hey ash Lou, really nice to meet you​:grin:I’m not long a member here either,unfortunately in Ireland we are living in stone age regarding this co edition,so happy to hear you have someone who wants to help you professionally,where do you have the condition? Are you coping ok and all,I’m heat anyways if your ever having bad day :grin:xx

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Ok, well that sucks, I can tell by your posts you are not here to draw new patients but wanted to connect as we both have EM. Am always going to stay with my GP and specialist but kinda feel why wouldn’t it be fair to connect with people that live in the same city as me so we can talk about our condition. Iceberg meant to break any rules, I didn’t mean to step outside of guidelines. I didn’t even realise you were a professional until after I had read a few posts. I guess part of learning about this group. Kinda feel a bit deflated knowing this, this is life yeah? Bummer. All good will keep on keeping on and reading your awesome posts Stan :grin:

Sorry typos I didn’t mean to break any rules not icebergs lol

I think there are a number of Aus based people. The connection we all have is online support.

observe “going down the rabbit hole” which is what I used to do with my pain … by noticing our thoughts we have the option to make a subtle “shift” and by dropping the resistance we feel towards the pain, we divert and the pain spontaneously subsides to the point potentially where we can watch it from a rather detached viewpoint. This is more of a heart than a mind state. Hope that makes sense… :slight_smile:

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**Dear Ann Marie,
I’m so sorry for what you are going through Erythromelalgia won’t show up in any kind of test but a genetic test. SCN9A gene anomalies. I don’t know if the has a doctors list for Eireland but if you look for it there and can’t find any names I’ll look for you.
Basically most of us went to many doctors for many years to get diagnosed. Please hang in there. You are not alone. Patricia **

I was diagnosed by a neurologist two years ago - after being passed around like a hot potato from one doctor to another - who all made me feel like it was nothing, just in my head, perhaps depression, go home put your feet up and cool your feet off. I have no work life balance - I struggle through work and am completely exhausted when I get home everyday, by the end of the week all I can do is stay in on weekends and put my feet up. Summer is horrible for me, changing of seasons, and humidity forget about it.
Learning to live with this, it has been hard and I am sure it will get harder. But I try to remain positive, meditate - mindfulness meditation helps me through some of the worse flares. I have been on Gabapentin and venlafaxine since being diagnosed and my dosing of each continues to go up. I am also seen in a pain clinic as well they like to keep an eye on me.
Hugs everyone - keep positive!!!

Doctors do that to women a lot. A couple tried that with me and after I (more or less) incredulously said “How dare you?!”, I walked out on them.

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@CarterDK I dropped the F bomb at a neurologist who told me that there was nothing anyone could do for my “made up” symptoms and that I would have to just get used to it. One month later I started making headway with the cyproheptadine and then the mexiletine another month later.

@Teresa111 My best advice is to stop seeing the doctors who act like this, they are not willing to help. Keep searching for a doctor who is willing to learn and listen to you.

Thank you both, I am exhausted all the time and find I just don’t have the patience for bullshit any longer, I know my body and thankfully I have an awesome pc who is starting to send me to doctors that understand both the female and male bodies and the not so obvious differences. Wish we had of started off here though not going to lie - better late than never!

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One of the doctors I walked out on also told me no one would be able to help. But someone did help me, ironically, 2 floors above him in the same medical center. LOL