CFS specialist

[flexibeast]

Yesterday naked_wrat and i went to see the CFS specialist who we've been waiting to see for months (apparently his next available appointment for occasional patients is in November!). Thankfully, it went really well - in many ways, it felt like the opposite of our experience with 'Z':

• The specialist - who i'll refer to as 'Y' - had a substantially different vibe about him; Z. had a definite air of condescension that i didn't sense from Y.


• Y. took the time to let me explain how things had been; then asked me to clarify, and elaborate on, a few things; then made several suggestions and recommendations. At no point did he feel the need to discuss my estrogen intake, despite my referral letter informing him that i am actually on hormones.


• Y. made no claims about 'curing' my CFS - only managing it. He gave me a copy of a letter that a celebrity with CFS had sent to one of Y.'s patients: a celebrity who had spent ~$150,000 travelling around the world looking for The Cure. The celebrity in question basically said "There isn't a cure for CFS. If there was, we'd know about it."


• Y's recommendations in terms of managing my CFS focused on routines in terms of sleeping, exercise and diet. Basically at the moment, i have no routines in these areas; he told me that it was important to slowly work at establishing some. "Slowly" because the processes involved in managing CFS are very slow - "pathetically slow", as he joked - and trying to take things too quickly simply exacerbates the problem.

As i've said to a few people off-LJ, the contrast between Z. and Y. is quite startling: i paid Z. ~$170 (~$80 of which i got back on Medicare) to be treated like an imbecile, lectured to on gender identity, and given very little practical advice about dealing with CFS; whereas with Y., i was treated with respect, genuinely listened to, given practical recommendations for managing my CFS which in no way involved my gender identity - and was bulk-billed for it (i.e. i paid nothing)!

So Y. has asked me to check in with him again in about six weeks' time - and i'll be more than happy to oblige. :-)
 

Comments

[ruth-lawrence.livejournal.com]

Y sounds excellent, what a relief.

[jomaraubat.livejournal.com]

So good that you've found a good one - thankfully they do exist. And no wonder he's so booked up.

My ex was diagnosed with fibro-myalgia a few years ago. The diagnoses essentially consists of applying pressure to about 18 pressure points around the body. Extreme pain in 10 or more (or something like that) is a clear indication. Of course this fucker insisted on pressing EVERY point even after the diagnoses was confirmed by the first ten. And his attitude sounded very similar to Z. My ex was in pain from this examination for a couple of weeks. "First, do no harm..."

[candika.livejournal.com]

Y sounds like he knows his stuff. It is about mannagement. People don't get completely better but many are able to live a relatively normal life (in terms of energy levels)if they learn what works for them.

[cheshire-bitten.livejournal.com]

That is really good, I am so glad that you are getting treatment from doctors who aren't crap.

Kinda on/off topic, I remember reading an Australian study on CFS (which I can find for you if you want) which was basically about what Y was talking about, managing CFS through diet and excise, basically the researchers point of view was that with or without CFS being otherwise healthy would improve the outcomes of people with CFS and the study seemed to back that up, the thing that shocked me was that while they started all the CFS suffers on very small amounts of exercise, (5 min ever second day, and don’t exercise if you don’t feel up to it) more than half the group at the end of the study had upped their exercise to 30 mins ever day, when I heard that my first response was that I don’t do that much exercise a day.

[flexibeast.livejournal.com]

Indeed!

[flexibeast.livejournal.com]

*sad nod* A number of doctors i've encountered have a "Don't be a wuss!" approach, which seems to lead them to a failure to treat the Oath with the respect it deserves. :-/

[flexibeast.livejournal.com]

*nod* i've had to learn what works for me the hard way, for the most part; but i'm hoping that working with Y. will change that. :-)

[flexibeast.livejournal.com]

*laugh*

A lot of people with CFS loathe the whole 'exercise' technique, because many health practioners not only see it as a 'solution', but also as something that can be easily performed. Neither of which is true for many people with CFS . . . .

[cheshire-bitten.livejournal.com]

Yes, most doctors are of the option that they are always right, and it is very frustrating.

[cheshire-bitten.livejournal.com]

I hope that I didn't offend you, I really didn't mean to, I have no desire to minimise your experiences or tell you that your approach is wrong, I was talking about this with not_in_denial the other day, about how treatment of many medical conditions is way more personal than most people realise, and I if I hear something worked in a study or if it worked for someone else, that means that this way of dealing with a disorder is a management strategy that worked for those people, it may or may not work for you.

Also sorry it takes me so long to post.

[flexibeast.livejournal.com]

No no no, i wasn't offended at all! It's usually fairly clear when i'm offended: if i'm straightforwardly offended, i say "Um, who the !@#$ do you think you are?" (or something along those lines); but if i suspect that the offense may have been inadvertent (my misreading / the other person's misphrasing), i'll say something like "Er, so are you saying etc etc.?"

In this particular instance, i'm sorry if i phrased what i wrote in an offended tone; it was meant to come across as matter-of-fact, not offended!

Finally, no need to apologise for taking a while to post! These things happen. And anyway, i'm just about to respond to a comment someone left in my blog almost two weeks ago, so i can hardly cast the first stone. :-)

[cheshire-bitten.livejournal.com]

I was just checking, because of my language issues the low bandwidth medium, I find it hard to know if I am putting my thoughts the way I mean to.

[flexibeast.livejournal.com]

*nod* Fair enough, and thanks for checking. :-) *hugs*

[cheshire-bitten.livejournal.com]

*hugs*

Hope to see you soon. :)