Are there any other members living in NewZealand that i could communicate with as em is not well known
hi Gossie just seen your post as Iām new here. Iām an ex Auckland kiwi now living in Melbourne last few years and I travel back frequently to visit family and friends. Iāve self diagnosed EM and Iām a GP, lol! Done the specialists rounds too. How are you doing?
Hi, I live in Feilding NZ and have been diagnosed with EM. I have it on my lower legs and feet.
Would be good to talk to somebody who has tried different meds.
regards
Hi Stan,
I have EM and interested to know how you treat your EM. It is an horrendous syndrome.
Regards
Irs
Hi Iris
Good to hear from you.
Iām currently on pregabalin (Lyrica) started low dose about 18 months ago. As the pain has escalated Iāve very slowly increased the dose to now 225mg -250mg at night which certainly helps with sleep and Iāve been tolerating that.
Also on alpha lipoic acid, magnesium orotate, CoQ10 and vitamin B1 but no idea whether they help. Some of those are good anti oxidants which helps with mopping up free radicals. I also have type 1.5 diabetes (LADA, latent auto immune diabetes of adulthood) but that is not likely to have anything to do with the EM as I can recall a burning feet episode when I was a young teenager. My blood sugars have been excellent & only in the past few months have I required diabetes medication.
For me one of the most effective ways has been meditation (mindful awareness) which allows one to detach from the pain by just observing it rather than being in resistance. Iāll post separately under that topic soon. Be interested to see if others have found it beneficial.
What are you doing yourself?
Hi, I live in NZ (Chc) and have EM and Raynaulds. I am also struggling to get help. It is not well known enough here and its frustrating as I seem to be bounced from one Dr to the other as they wipe their hands of it if I pass the tests they have given me. I am currently on 50mg of Amitriptyline as I get migraines also.
Do you have any tips or medication your on at the moment or even better, have you seen a Specialist that can help you.
Hi Dene
Firstly do you know if you have primary or secondary EM?
Itās important to exclude any potentially treatable secondary cause.
Prof Andre Van Rij, surgeon in Dunedin has experience with EM, as I recently read a research publication of his providing evidence that the frequency of EM is in fact a lot higher than is usually quoted. The paper established that quality of life is significantly adversely affected by EM. I suggest phoning his secretary and seeing if he can recommend anyone in ChCh. I worked with him in the mid 1980s and heās a genuine chap.
The current medication options are generally at best only partially helpful (but better than nothing) and it may take some time to explore what may suit you best with minimum side effects. The sodium channel blockers hold promise and some are under active clinical trials so hopefully it wonāt be too long before we have some break through. There are a few sodium channel blockers that are in use already. Despite hesitations about big pharma at least they have resources to direct towards it as the potential benefit is way broader than EM eg trigeminal neuralgia, sciatica etc.
Progress in traditional medicine has been incredible in recent decades with many conditions becoming treatable now that werenāt not that long ago, certainly in my practising career of over 30 years.
Non mainstream options can be very helpful and worth considering for EM eg meditation (lots of freely available stuff on YouTube that I use all the time), acupuncture & vitamins amongst others. Iām about to start a trial of Bobās heating protocol as our fellow posters are getting benefits.
Then of course exercise, sleep, nutrition, supportive family, friends & colleagues.
I get some benefit from a night dose of pregabalin. Whatever medication you may try go slowly with dose increments to allow your system to adjust. Your GP can manage this if they are open to it, even if a lot of specialists arenāt. But be careful not to lump all doctors into that latter category. Once you find a supportive one it can make all the difference. Thereās an overlap in potential experience between vascular surgeons like Andre, neurologists, rheumatologists and pain specialists.
Best wishes
Hi Stan,
Thank you for contacting me via this website.
I am currently on Gabapentin and Aspirin. When its not 30c like today I can manage it. I canāt walk far as it starts a flare so went swimming and that caused a flare so currently getting larger.
I have also been diagnosed with El
I couldnāt go back to the Dr that Diagnosed me, he told me to talk to my GP and he can talk to him. Furious over this GRRR.
You are also lucky to be able to eat all the things you do. I cannot eat mushrooms, any sort of curry, pepper and mustard. When you go for dinner
to resturant most things have pepper now so its a nightmare.
My Husband bless him has made me a frame for the bed so the sheets donāt touch my legs. He has also put an air contioning unit in the bedroom. Both of these things help a lot.
Hi Iris
Yes it can be frustrating and challenging! I hear what youāre saying and what a great husband you have.
Did you mean youāve been diagnosed with EM ie erythromelalgia? or something elseā¦?
Have you tried Bobās protocol, the regular heating?
I am finding this very helpful, as are a number of others.
I also found that aggressive cooling is counter productive; it seems to flare. Gentle cooling seems ok.
Best wishes
HI Stan,
Yes I have been diagnosed with EM. I do have a wonderful Husband who would do anything to have the old Iris back.
I have been seeing a guy in Auckland called Fraser Burling and he told me to try the hot water trial. We do not have a bath but two showers and so stay in the shower longer and gradually turn the hot water up. One day I had tiny blisters on the backs of my legs but nowhere else on my body. So we decided to stop.
The eletric shocks, stabbing or somebody tearing your skin open feelings have increased but the flares have subdued until I cover my legs then the redness and heat is back. I always have the pins and needles and spiders or flies crawling over me feeling. Just horrible.
This is such a strange thing to have. I donāt know if I said but Fraser Burling also said that I have Elhers Danloss syndrome and he thinks they are related.
Do you get the electric shocks and stabbing feelings. They are so very painful and make me scream even in my sleep.
Reading about other people does help me and I know that I am not the only one in the World, because when I go to my Doctor he makes me feel its so rare and he doesnāt have a clue what to do with me. In the too hard basket I think.
Did you try Bobs protocol? Did it do you any good?
Take care.
Regards
Iris
Hi Iris
Wow. And yikes re the stabbing shocks. I have a background burning which often flares in the evenings. Bobās protocol seems to be helping but itās early days with that having only started about 3 weeks ago. I use a small rectangular low profile plastic bucket I found at Bunnings.
Maybe you could try it again and monitor the skin closely. Starting at say 37.5 C then slowly increasing from there. I use a cooking temperature probe for the water (not my flesh!) & set a countdown timer on my phone then watch You tube or read to distract myself. Another thought maybe you could rub some protective cream onto the skin to provide a barrier. And perhaps start with only 10-15 minutes in view of the E-D syndrome.
Iām hopeful that soon one or more of the sodium channel blockers being trialled will be available.
All the best!
Hi Again Stan,
I will try what you are doing with the hot water and see how I get on.
What are the channel blockers called that are being trialed and when did they start the trial?
Do you not get the stabbibg shocks? nobody else has mentioned them that I can remember. Malc thinks its coming from my back because when I sit down and relax they are far worse. When I paid for the MRI nothing showed up so maybe I need a scan.
Clutching at staws here.
Cheers for now.
Iris
Sorry for delays Iris.
See my separate thread on Vixotrigine.
Regarding the stabbing pains, they do sound like neurologic pains ie due to misfiring nerve endings sending pain signals via the spinal cord to the brain (in very simplistic terms).
Whether thatās part of EM or not I donāt know. Sorry.
How often do you get them? Are they as well as the more typical burning of EM? Do they occur at the same time? Apologies if youāve already discussed this.
Stan
hi Gossie
yes, Iām in Dunedin as is my mother. Iāve had this horrible problem since 2001 and was finally diagnosed a couple of years later.
Mum and I have both been guinea pigs for a long time now with not a lot of positive help. Iām on morphine for pain relief and have just started taking Pregabalin (Lyrica), only 2 weeks on it and not sure if the blisters Iām getting have anything to do with that or not.
There was a study down here in Dunedin a few years ago about people with burning feet and apparently my test results were the worst recorded down here. Didnāt get anymore significant help even then,
I canāt let the sunshine touch my feet, and the burning has slowly moved up my legs to about 10cm from my knees.
Living in Dunedin is probably an advantage although summers can be murder and winter comes with its own nastiness as well. Any other fellow kiwis feel free to drop me a line at ā ā ā ā Hope itās ok to share my email address
love and light
Kazz
Hey nzkazza,
As you can probably see from your post, email addresses (and phone numbers) are blanked out by the server as a safety mechanism. There are often ālurkersā who come visiting to harvesting personal details including emails and phone numbers and for this reason they are blanked out.
I am a moderator on the Benās Friends Network living in Australia, but originally Iām from a small town about 100km south of you and know some of the concrete views of the medical fraternity down that way. Trying to obtain answers and treatments for rare illness can be a real battle. I hope our network can assist you in finding fellow suffers to be able to network with. You or other members can always message via the network by clicking on your name and a small window will pop up with a blue āmessageā box on the top right hand side.
I hope this info may assist.
Merl from the Moderator Support Team
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hi Meri
thank you and sorry re the email thing 
yes the medical community down here is really sad, I tried requesting a cream that Iād seen on here had helped some other sufferers and they just flat out told me NO, then my doctor thought she did good by only putting in one of the ingredients in a cream base that I react to badly, too hard box for me too sadly!
This forum is great, thanks so much for your input, will remember next time xo
cheers
Kazz
Hey nzkazza,
Certainly no need to be apologising. If you did not know that your addy would be censored you may have thought a moderator had done so, when it is actually the server.
As for the medical community down that way. I havenāt been there for many years now, but when I was they could never find any issue, then I came over here and ignored my symptoms for a bit as I was always told āthereās nothing wrongā. Problem was that there was something wrong. So one day Iām driving down the road and the lights went out - I couldnāt see - it scared the absolute daylights outta me, and that made them investigate and they found a major issue which required neurosurgery. But no one down there wanted to know. I was told āweāre the drās and we knowā¦ā Well, no they donāt.
If you do find a decent dr who will listen, stick with them because good drās can be VERY hard to find.
Merl from the Moderator Support Team
hi Merl
Iām so sorry you had to go through that, if you were in the States you could have sued them! I remember being a teenager and breaking my wrist, just before my school certificate exams. They told me I was a hypochondriac then found a break 2 weeks later! It traumatized me so badly that after that happened I always put off seeing a doctor when something went wrong. A few years later I was working as a data input clerk and developed RSI (as it was known then) and had to quit workā¦ My symptoms were so similar to EM, not that I was even aware of that then. I sprained my ankle 11 Sept 2001, put off getting treatment and eventually it was so bad I had to go to the hospital, needless to say, that, and genetics, triggered the EM I have now. I see no hope but do try to stay hopeful. I dread one of my sons ever developing this horrible condition, and my younger sister now has facial flares and also her lower arms flare. Scary stuff, especially now sheās a grandmother and has a son and daughter.
Did the neurosurgery help you?? That must have been so scary! I hope you donāt suffer too much these days but do realize that as youāre here you must do. healing love and light to you from chilly Dunedin xx
āDid the neurosurgery help you??ā
Help? Hmmmm. The first surgery treated some symptoms but triggered numerous others. The 2nd surgery was to resolve those issues but didnāt and those symptoms have been ongoing since. I now manage all sorts of sensations which the medicos have very little in the way of answers for. Iāve (so far) had 6 neurosurgeries in total since the first and each has had itās own issues. So āhelp?ā, yes, helped in some ways but in other ways, No.
Itās been a bit of a double edged sword for me. If I hadnāt had the operations Iād be dead, and I acknowledge and accept that, but the surgeries have left me fairly debilitated now. The headaches I have as a constant I explain, in their bad stages as, being āEnough to kill a horseā, but thankfully their intensity varies. But then as Iāve been told the headaches wonāt kill me but at times I do wonder. I try to make light of it by saying āI have a man residing in my skull trying to beat his way out with a sledgehammerā haha, but people who see me know thereās no haha involved. I look bloody awful or so Iāve been told.
Merl from the Moderator Support Team
So sorry you have so many problems, Iāve noticed a lot of people with EM have more than one disease/disorder which is horrible, Iām one of them obviously, as is my mum whoās had it since I was 7 or 8 yrs old. She didnāt get the diagnosis for such a long time and I remember as a kid watching her and wishing something would help her. My āstrainā of EM has mutated and is quite different to mumās but is good to have a family member who understands.
I hope your headaches ease and you can get some relief from your problems, I know itās just words but wish I could help you and all the others with EM. Iāve just had my first drop of medicinal cannabis so will let you all know how it goes. Any relief is good relief.
Itās very cold down here in Dunedin at the moment and I have a feeling itās going to be a tough winter, not being able to wear footwear at all isnāt very helpful and reacting to the heat pump doesnāt help much either but hey, 4 or 5 more months and weāll be back to the warm stuff so canāt win really.
Love and light to you Merl, and all the other members too from someone who occasionally tell strangers that my ugly feet are a symptom of brain damage haha The humour thing can help sometimes and I really do get your āman residing in my skullā thing, laughter is the best medicine Take care xx