Hello to All from Australia

Welcome New Member Introductions
1

Just joined and wanted to say G'Day from Cooma NSW Australia - It might take me a little while to get used to this site and just exactly how it functions - I think I might have been in the wrong places - but that is typical of me anyway ... always in the wrong place at the wrong time ...

Anyway Cheers to Everyone here from Cooma NSW Australia - Cooma is a rural country town of about 8,000 people - approximately 100k due south of Canberra the National Capital of Australia - Cooma is the gateway to the Snowy Mountains in Aus and Yes they actually get skiable Snow on them - there are quite a few Resorts up there .... about 50k away in a straight line from where I live in a small cottage on a 20 acre property 6k out of town - nice and peaceful and no one can hear me scream...

I have EM in both feet and have had it for around 7 years I guess - my first diagnosis was from an Immunologist some 3 or so years ago but I didn't believe her at the time because she just wouldn't listen to what I was trying to explain to her that I thought my red swollen burning feet episodes were from the foods I was eating, I could eat the same thing/s for days and feet would be ok but then the next day same food and my feet would go nuts - Neither She nor I had heard of different things triggering these EM Flares (as they are called here) - Perhaps it was that some days I wouldn't have coffee after a meal and some days it would - anyway after a couple of years I decided to pursue the matter again through a Vascular Specialist this time and the Professor I saw at the Canberra Hospital was in no doubt that it was Erythromelalgia that I have ...

And after reading up on the subject from a very informative website by Dr Jay Cohen (USA) I am now of a better understanding of the condition and will be trying to get it under control by whatever means works for me - as I understand it there is no one single treatment for everyone ....

It's getting late here - 1:20am and I need some sleep - my feet are still burning moderately so I will go and try and get some sleep -

Cheers to you all - Take Care

frostbite

(Greg)

2

Welcome Greg. Hope you banged to get some sleep. There are certain foods that can trigger EM for some people. Caffeine and alcohol really trigger flares for me, I don’t have any caffeine but do sometimes drink even knowing it will cause a flare because sometimes I just want to do things with my friends that involve drinking.! :slight_smile: there are some discussions on here that talk about the effect food can have on EM.

3

Welcome Greg

I'm in Melbourne and a newbie to this site also. There are a couple of us on here from Australia. My father originates from Huskisson (Nowra) so I know your area a little bit - its a great spot.

All the best.

Craig

4

Hello Greg. During your 7 years with EM have you had any significant amount of time without flares? Months maybe? Did it start out less severe then increase to the severity you see in your pics? I’m just trying to get a better idea of the different possible patterns of EM. I have only had it about 3 years and I did have 2-3 months in a row that it wasn’t gone but I could take temps to closet to 80 before it started instead of high 60s but that was over a year ago and I haven’t had a break since. As far as food goes one cup of coffee doesn’t seem to be a problem but 3 sips of wine sure does! Every once in a while I will have a friend over in the winter and open the windows to chill the house so I can have a couple of glasses. She just knows to bundle up! Take care
Alina

5

Hi Greg

Yeah I bet the cold would help! I work in the city but live about 30kms down the South East coast... (Bayside)

Ah in Wodonga, you were on the border for a while..

Are your feet always burning or do they frequently flare?

Mine always flare up red and then calm down after taking off shoes, moving to cold tiles, etc. I don't get swelling but have noticed lately that waking up my hands and feet hurt a bit - like bad circulation or something.

Have you tried aspirin yet? I tried it and found it definitely helped somewhat. Much less burning - must separate platelets or something....

My feet stay white and don't tend to burn/or very much at all through 48hours after taking a single 300mg aspirin...

Craig

6

Hi there,

My name is Louisa, i have just joined this site today. I am a 30 yr old female diagnosed with EM 2 yrs ago ( bloods were sent to the Netherlands and i was found to have the mutated genectic form- yet none of my immediate family have had issues??)

I live in Kiama NSW, Australia.

I just wanted to share my story to see if others have had similar experiences.

My first EM flare up was when i was 12, i suffered from immense pain and burning on my feet and after seeing several doctors who diagnosed me with Growing Pains, Complex Regional Pain Syndrome, Ross River Fever and other mosquito borne illness, they eventually gave me hydrotherapy in a heated pool. My EM Flare eventually went away- after 6 weeks and i went back to my normal life. I played all sorts of sports and was very active as a teenager.

My next flare ups happened in my 20's (when i was really tired and rundown) just twice, for a few days. I blocked it and told myself that it was all in my head and some how they went away

Then 2 Years ago it was back again. I was living on 3-4 hrs sleep a night as i was working at home and looking afterr our two young kids. I was struck down with Flu like symptoms for a few days with aches and pain all over and then my feet and hands started to burn and throb as well as electric shocks in my knee and ankle joints upon moving. Blood tests showed elevated white blood cells and higher than normal RH factor but not conclusive. I eventually admitted myself to hospital (as i was sleeping with my feet in cold water BIG NO NO and was no use to my family). I was seen by a fantastic Rhemutoligist who suspected EM and trialled me on all sorts of medications - (sorry about the spelling) Amytriptiline, Mistopristol, Gabapentin, Pregabalin, Lyrica, Prednisone, Endone, Oxycontin, Lignocaine, Elma Patches none of which gave me much relief but the Temazapan helped me sleep my way through most days. Eventually after 8 weeks i was given a Sympathetic Lumbar Block (injection in the spine) which did give me relief. I still had some pain but it was bearable so discharged myself as i had lost 25 kg and was skin and bone from loss of appetite/bad hospital food. i stopped all medication the day i left as i felt i was going crazy (probably a side effect from one of the drugs), i slowly recovered and after 3 months was back to normal (only wearing closed shoes for an hour or two a day though).

Up until last week- after a few busy weeks with little sleep and feeling run down, i woke with the same EM pains.

I have come to the conclusion that my EM is triggered by stress and lack of sleep and seems to be related to my lower back. I have managed to get relief from a heat pack on my lower back around my tail bone. I also have had relief from having a really hot shower (YEP i know, let me explain). We have a detachable shower head, so i sit in the shower and run the hot water only over my torso, lower back and up to me knees (keeping my feet well away). It seems to help running the hot water (as hot as i can handle ) over my neck/spine and lower back. Just wondering if anyone has experienced the same. I am wondering if their is some link to the Sympathetic Nervous System, EM and my lower back??

Anyway, thanks if you have read this through, this is just my story, happy to be here with others in the same boat.

Louisa

7

Hi Lou.
Defiantly stress and lack of sleep are real triggers for me too. Like Greg said in the day they aren’t good but not usually as bad as the night. I had a stent where for several months in a row I would have the worst burning feet I couldn’t stand it! I had to start getting most of my sleep in the day. If I’m lucky 4 or so hours. The stress and the pain caused lack of sleep and they both make the EM worse triggering a vicious cycle!take care
Alina.

8

Hi Greg and Louisa, I live in Corowa NSW. My 8 year old daughter has vulva EM, Interstitial cystitis, EDS (Hypermobility) CRPS and is currently being checked for seizures. Im struggling to find a dr who can help her!! She is on gabapentin, tramadol and endone for pain, we use a cooling mat, cooling scarf and she has a fan next to her bed, at the moment as its so hot here she spends a lot of time in a cool bath or sitting in a pool!!!

9

I'm not from Australia, but just today I came across an article by some medical students at the Australian National University, printed in the "Medical Student Journal of Australia", in Volume 4, Issue 1, June 2012. The article was called
"The Molecular Pathogenesis of Primary Erythromelalgia, a painful inherited syndrome, - an update".

I know they aren't yet doctors, but it makes me think that at least one of their professors might know about and have an interest in Erythromelalgia. Also, I know the article is about inherited, genetic EM. But Jacqui, your daughter is so young that her EM might just be the gene-mutation variety. Researchers are finding that sodium channel blockers might help for people with this type. I was just wondering if it would be worth calling the medical school there and talking to some people. Maybe you could find a way to contact those students who wrote the article, and ask how they learned of EM, and if they had any ideas or a teacher who did.

I hope this might help some. The article can be found at:

eview.anu.edu.au/medical_journal/vol14_12/pdf/08.pdf