Specialist in Melbourne + Help!

Symptoms and Treatments Recommend a Doctor, Therapist, or Clinic (Positive
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Hi!
I’m only new to this forum but have found it is reassuring that I, not the only one battling this horrible illness.
I’ve only had it for a year but I’m currently going through the worst flare up I’ve ever had and every single day it’s so debilitating. It only affects my fingers but they are so swollen, red and itchy and the only thing that relieves it is cold packs. I’m currently on a course of predisolone but it doesn’t seem to be helping.
Can anyone recommend anything that have helped them when steroids don’t work?
I see a rheumatologist but thinking of maybe seeing someone else to help manage the pain. If anyone else is in Melbourne, Australia, do you recommend anyone that has been helpful?

Thanks in advance!!

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Hi there Caity! We’re glad that you found us here, but sorry that you qualify to join the club. It is comforting to know that you aren’t alone with this, isn’t it? You now have dozens of new friends all over the world who “get it”. That’s a good feeling.

I hope someone from Australia responds to your request. Although it’s nice to have a specialist close to home, it really is worth going further afield if you need to: a really good specialist can be cost effective because if they get you sorted out properly, you will have to see them less often.

Best of luck, and again, welcome.

Seenie from ModSupport

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Caity, have you used the search engine (magnifying glass near your avatar)?
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Searching for “Melbourne” may yield something! Alternatively, try searching for the names of other major Australian centres.

Seenie

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Hi
I’m in Melbourne and happy to provide some suggestions.
For myself I’ve found the following helpful
-Bob’s protocol for hot soaks
-Whole food Plant based diet (anti inflammatory & improves blood flow - that’s the simplistic explanation; there is plenty of scientific evidence to support the benefits of a WFPB diet. I’ve recently attended a large international nutrition conference in Washington DC which was awesome)
-Gentle exercise
-Sleep
-Stress management- cutting back a bit
-calming the anxious mind (watching thoughts without judging them). There are some great YouTube resources.
-Family & friends
-Medication - trying to find something that helps which you can tolerate.

Doing the above I’ve been able to reduce my pregabalin dose from 300-> 100mg daily.
I have adjusted to the pain being there in the background rather than in front of mind. Resisting or fighting it seems to magnify it.

I’m a GP currently practising part time outside of Melbourne & I’m not looking for patients. I’m primarily here as someone with EM myself, to keep up with new developments & provide support.
I’ve been rather busy hence haven’t posted for a while but you could search for some of my other posts.
Happy to chat by phone if you’d like to send me a PM

Stan

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Hi there Caity,

I’m in Castlemaine in regional Vic so not too far from you. I’ve found Zostrix HP helps a lot if I apply it 3/4 times per day for about 6 weeks. It gives relief for about 5-6 months & then I reapply it (and no script required).

I also use Biofreeze on a one-off basis when my feet have been stirred up by something I’ve eaten or hot weather etc. I’ve found it on-line in Australia

I was taking Claratyne and Ranitidine but I’ve recently noticed that if I avoid eating hot foods such as curries. I don’t need the medication. The only alcohol I have occasionally with no ill effect is a G&T - wine has long been a no-no for me sadly because of the Erythromelalgia. Luckily I have helpful GP’s who are willing to let me try different meds but I haven’t consulted a specialist.

I wish you well in your search - persist with things that seem to work for you and discard those that don’t - we are all different and it certainly seems that what works for one might not work for another.

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Hi Leigh,

Thank you so much for your reply! I really appreciate your insight and experiences with EM. I will definitely consider what you’ve said and give those things a trial and error.
I’m finding the variability in weather here in Melbourne has had a big impact.

Thank you once again!

Kind regards,
Caitlin

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Hi Stan

Thank you so much for your detailed and insightful reply! You have so much knowledge as to some different treatment options that I will definitely look at and have a go.
It’s so hard because treatments are so individual and no one way works for everyone. I guess I just have to be patient and slowly I’ll work it out.
The steroids have now kicked in so I’m finding some relief. But I definitely don’t want to be taking steroids every time I get a flare up.
Was wondering, do you experience nausea during flare ups? I find I become really exhausted, tired and nauseas.
Also have you found a specific diet or seeing a naturopath helpful in any way?

I currently see a rheumatologist at Cabrini Malvern, but she hasn’t given me much insight or different treatment options and I’m just a bit fed up that I could cut my fingers off haha.

Anyway, thank you so much again! It’s reassuring that I’m not the only one who deals with EM everyday.

Kind regards,
Caitlin

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Hi Caitlin
Nausea is a non specific symptom that has many causes, including an underlying condition, medication or stress/ anxiety. It’s something to ask your doctor about. I generally don’t get it myself. Ginger is often helpful if there is no reversible cause.

I presume you’ve been checked out thoroughly to determine whether your EM is primary or secondary? If you’re unsure ask your doctor.

My recent huge and ongoing research into the best diet is based on other scientists and doctors decades of scientific research. eg Dr T Colin Campbell, author of “the China Study“ the world’s largest ever nutrition study, as well as other world leaders including Dr Dean Ornish, Dr Caldwell Esselstyn and Dr Michael Greger. I tend to keep away from media click bait diets such as Paleo and Keto (which sadly have their celebrity advocates, have short term benefits in terms of weight loss and can reverse type 2 diabetes) but at the risk of long term concerns eg cancer and cardiovascular disease. There are compelling stories and some published evidence of the potential that a whole food plant based diet (WFPB) can reverse or improve auto immune disease such as multiple sclerosis, Crohn’s disease, ulcerative colitis, rheumatoid arthritis etc. And of relevance to us is the potential that EM has at least for many of us an autoimmune basis.

A WFPB diet has been shown to reverse cardio vascular disease in published journals. My own feet arteries (Dorsalis pedis and posterior tibial) blood flows improved after just 4 weeks of a WFPB diet. I was delighted and shocked! This was only 11 months ago.

Diet can be such an emotive topic that people feel strongly about and often closed minded to the possibility that other options may be more healthy. I prefer to look at the evidence. Most of us in the medical profession have no nutrition training including my own specialists.
Fortunately it is changing…

If you’re interested look at the not for profit nutritionfacts.org which has an excellent search engine with over 2,000 YouTube links, original research citations and a book titled “How not to die” and a great cookbook we use a lot. There is an upcoming book called “How Not to Diet” due out in Dec. This is all advocating a diet based on vegetables, legumes, fruit etc. We don’t need animal protein. For those who are motivated it is recommended to transition slowly from meat and dairy over a few weeks to months. Plant food provides all our protein, iron and calcium requirements. Vitamin B12, algal omega 3s and Vitamin D are usually required supplements.

But each to their own. I see so many patients who have blocked arteries, type 2 diabetes, hypertension, obesity and other conditions that are largely preventable and potentially reversible.

Given we already have EM it would be nice to avoid adding further health issues. There’s lots more that could be said but that’s enough for now.

Best,
Stan