Fibro Doctors in Canberra

[marmicros]

Hi, I'm wondering if anyone knows of a doctor in Canberra, ACT, Australia, who specialises in Fibromyalgia.
I continue to learn new facts about fibro, for example, that women with fibro experience more urinary tract infections and pelvic discomfort than women who don't. I'd really like to discuss my health care with a doctor who has experience with fibro and who keeps up to date with the complications.
Thank you.

 

[BlueBells]

Hi @marmicros

Welcome to the forums, and good to see another Aussie

From what I understand, such doctors are fairly scarce on the ground.

What I have found with this site is the sharing of experiences, talking about how we are going, and conversing with each other, is truly beneficial in learning how to accept and work with fibro, rather than against it.

Just being able to converse with those who "get it" is so great at relieving the stress of the "you'll be fine", "it's not that bad", "you look fine, you must be okay" comments unthinkingly passed by those who cannot comprehend this crazy little bunch of gremlins we dance with daily.

Welcome again, and please do join in

 

[marmicros]

Thank you for your warm welcome. Yes, this forum has given me a lot of worthwhile information.
My fibro started slowly in about 2011 and I was medically retired in 2014. In 2015, a female doctor I had never consulted before told me my condition was psychological. Needless to say, I didn't go back, but I have consulted a number of doctors with differing attitudes to fibro and it is certainly more accepted now than it was ten years ago. However, most doctors are ignorant.
Having supported a 34 year old friend through breast cancer, double mastectomy and reconstructive surgery, my favourite attitude towards fibro is "at least it's not cancer".
Pain is not my worst problem, it's fatigue, and sometimes I go through weeks of fatigue when I'm pretty well house-bound, if not bed bound. However, I'm 72 and retired so I can't and don't complain.
One interesting comment here referred to the use of Nandrolone decanoate or Deca-Durabolin, a steroid, but taken at about one tenth the dosage used for training enhancement. The man who spoke of this was really happy with it, with the exception that it caused impotence, but as a 72 year old woman, that isn't a problem for me.
Has anyone else tried this treatment?

 

[kalmen]

Hello,
I haven't tried this treatment, but it is certainly worth adding to potential treatments.

As for rheumatologists in Canberra, unfortunately the only one who has fibromyalgia experience (that I'm aware of) is Dr. Kathleen Tymms and she is retiring.

Your next options might be Goulburn, but none of them are experienced with fibromyalgia, however, I've heard good things about Dr Michael Oliffe.

Then lastly Sydney, I've been told that Dr. Nairan Kamalraj is good, and Dr. Denise Tong is good as well.

Hope that helps.

 

[marmicros]

Thank you so much for your help. I'll see how I go. Regards.

 

[BlueBells]

Hi @marmicros , and welcome @kalmen

I also am one that does not really get much pain, but the fatigue, loss of strength and brain fog, they are my main problems.

I was diagnosed late 2019/early 2020. It has explained so very much, and I realise I have had it since about 12, maybe as young as 6. I now have so many answers, but I survived anyway, it just would have made is easier having the continual "why's " answered.

Like you, @marmicros , when I have fog, I am thankful it's not the permanency of dementia, when I have difficulty with my balance, I know it will be fine tomorrow, I am learning to appreciate the better times and accept the not so better times as " that's life".

I'm sure you two will find this site is pretty good.