People living in NewZealand

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 I’m new here. I’m an ex Auckland kiwi now living in Melbourne last few years and I travel back frequently to visit family and friends. I’ve self diagnosed EM and I’m 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.

I’m currently on pregabalin (Lyrica) started low dose about 18 months ago. As the pain has escalated I’ve very slowly increased the dose to now 225mg -250mg at night which certainly helps with sleep and I’ve 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. I’ll 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?
It’s 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 he’s 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 won’t 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 weren’t 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. I’m about to start a trial of Bob’s 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 aren’t. But be careful not to lump all doctors into that latter category. Once you find a supportive one it can make all the difference. There’s 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 can’t 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 couldn’t 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 don’t 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 you’re saying and what a great husband you have.

Did you mean you’ve been diagnosed with EM ie erythromelalgia? or something else…?

Have you tried Bob’s 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 don’t 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 doesn’t 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. Bob’s protocol seems to be helping but it’s 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.

I’m 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 that’s part of EM or not I don’t 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 you’ve already discussed this.
Stan

hi Gossie
yes, I’m in Dunedin as is my mother. I’ve 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. I’m on morphine for pain relief and have just started taking Pregabalin (Lyrica), only 2 weeks on it and not sure if the blisters I’m 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. Didn’t get anymore significant help even then,
I can’t 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 ■■■■ Hope it’s 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 ‘lurkers’ 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 Ben’s Friends Network living in Australia, but originally I’m 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 ‘message’ box on the top right hand side.
I hope this info may assist.
Merl from the Moderator Support Team

1 Like

hi Meri
thank you and sorry re the email thing :slight_smile: yes the medical community down here is really sad, I tried requesting a cream that I’d 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 haven’t 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 ‘there’s nothing wrong’. Problem was that there was something wrong. So one day I’m driving down the road and the lights went out - I couldn’t 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 “we’re the dr’s and we know…” Well, no they don’t.
If you do find a decent dr who will listen, stick with them because good dr’s can be VERY hard to find.
Merl from the Moderator Support Team

hi Merl
I’m 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 work… 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 she’s a grandmother and has a son and daughter.
Did the neurosurgery help you?? That must have been so scary! I hope you don’t suffer too much these days but do realize that as you’re here you must do. healing love and light to you from chilly Dunedin xx

“Did the neurosurgery help you??”
Help? Hmmmm. The first surgery treated some symptoms but triggered numerous others. The 2nd surgery was to resolve those issues but didn’t 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. I’ve (so far) had 6 neurosurgeries in total since the first and each has had it’s own issues. So ‘help?’, yes, helped in some ways but in other ways, No.
It’s been a bit of a double edged sword for me. If I hadn’t had the operations I’d 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 “Enough to kill a horse”, but thankfully their intensity varies. But then as I’ve been told the headaches won’t kill me but at times I do wonder. I try to make light of it by saying “I have a man residing in my skull trying to beat his way out with a sledgehammer” haha, but people who see me know there’s no haha involved. I look bloody awful or so I’ve been told.
Merl from the Moderator Support Team

So sorry you have so many problems, I’ve noticed a lot of people with EM have more than one disease/disorder which is horrible, I’m one of them obviously, as is my mum who’s had it since I was 7 or 8 yrs old. She didn’t get the diagnosis for such a long time and I remember as a kid watching her and wishing something would help her. My ‘strain’ of EM has mutated and is quite different to mum’s 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 it’s just words but wish I could help you and all the others with EM. I’ve just had my first drop of medicinal cannabis so will let you all know how it goes. Any relief is good relief.
It’s very cold down here in Dunedin at the moment and I have a feeling it’s going to be a tough winter, not being able to wear footwear at all isn’t very helpful and reacting to the heat pump doesn’t help much either but hey, 4 or 5 more months and we’ll be back to the warm stuff so can’t 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 ‘man residing in my skull’ thing, laughter is the best medicine :slight_smile: Take care xx