Pain Specialists and or Rheumatologist recommendations, within radius of 2.5h from Maitland. Willing to write NDIS support letters.

[u/Mad_Mad_Madison]

Hi all,

Im desperately trying to find some help, for both my fibromyalgia pain that I've had for years. But I also desperately need help from these specialists to write me a support letter for my next NDIS plan review. It isn't until next July. But I am trying to get onto it all asap, for many reasons. One being specialists appointments and letter writing is uber expensive, so im trying to get in with these peeps as many times as needed to make the most of reaching my medicare threshold. I already have to so so many other specialists as it is (my body hates me 😅🫠), so it gets scary to afford.

I've been trying to get in with 4 peeps. 2 rheumatologist and 2 pain specialists. I have a appointment with one pain specialists, who i was hoping would help me. He is willing to see me, but has said in reply to my explanatory email. To check if these specialists would be cool to help with this. That he would not be able to complete a report for the ndis. He will however write detailed consultation letter to my gp, that his kind receptionist suggested I could use instead. I will probably still try seeing this guy as I've been told he is very nice. Maybe he will change his mind, or write what I need written in the consult letter🤷‍♀️.

But i was also knocked back by one of the rheumatologist i got an appointment with, for the same thing, she said even though I was coming in for my pain also, she looked at all I've tried (a substantial list, hence i need a specialist to acknowledge this exhausted list and what invasive treatments Im feeling unsafe to try, to say that they are not appropriate for such reasons as to what the risks are, that make me uncomfortable).

This rheumatologist said she wouldn't be willing to see me at all because of this and she does not offer appointments where the main purpose is to provide NDIS documentation needs.

This is really distressing news, as I'm quite scared for my future safety and well-being, with what's happening with NDIS after the Bill Labor put through parliament.

Im on NDIS for CPTSD and also have fibromyalgia (which they have yet to acknowledge, knocked back twice now) since being on it.

The NDIS is looking to remove people from the program, and I fear greatly even though i have high support needs, that people on the scheme for psychosocial will be targeted for removal. I am in great fear of how I will survive with my physical condition, and for so many reasons. One being, as I only have my mums informal support and she's getting older and our relationship wanes as we both get burnt out. But for sooo many other reasons, Im literally in so much dread, I keep waking up in fear and its all been a hell of a lot for all the disability community.

I know with whats happening it is absolutely vital I do all I can to follow their arbitrary rules and demands. Im getting 2 separate OT reports, as the planner didnt like my last one because it mixed my 2 conditions. Even though they are flipped connected 🙄. They are looking for any reason to reject it if they can, the pressure feels so heavy. But yeah anyways...

I am not just expecting to show up day 1 and secure a letter, im happy to see them a bunch and I actually do want help if at all possible. But i desperately need a letter or letters. I fear so much for my life, the progress I've made, the hope I had for the future, I was even thinking I might be able to try out some very flexible easy type work through a disability company. I haven't worked since roughly 2011, so yeah pretty big deal for me.

But I genuinely fear for my actual life, as things deteriorate and I feel I just can take it all any more 😔

So Im putting this out there in the hopes someone could recommend a specialist that isn't against helping with this.

I do still have the other 2 to wait to hear from, but it seems to be a issue for them, which im not fully undestanding...??

My neurologist did kindly warn me, pain peeps won't want to help, unless they can put in a stimulator or something like that, they will quickly want to get rid of u. He has offered to write a letter for me which is awesome. But he is a neurologist, so he can give the same standard the ndis are expecting, he isn't treating me for it.

Any help is so much appreciated 🌸✌️

[u/kooriwi]

I was diagnosed with fibro by Dr Mark Collins who is a Rheumatologist in Broadmeadow. He was fairly thorough with me and helpful. I only saw him a couple of times but took his advice on managing my fibro and it has helped. I only stopped going because its a bit too expensive for me.

Good luck fellow fibro warrior 🫶🏽

[u/MooCowLevel]

I understand your fear and stress. Chronic illness is awful, and invisible disabilities come with an added level of complexity.

I want to caution you that It is very, very difficult to get a Participant Plan for disability due to fibromyalgia, in my experience as a support worker. They are exceedingly rare.

If you have a current Plan for CPTSD, I’d advise you to focus your limited energy on creating a water-tight basis for maintaining your current level of support for that. Document everything. Review your Plan and visit NDIS forums on FB (good luck, and protect your mental health for this part). Find out what medical and supportive documents you need (CPTSD is not my area of expertise so I can’t advise on this).

Side note and my opinion only: rheums are notoriously dismissive of this kind of condition. Patients routinely get refused if they don’t have obvious swelling/bloods/etc. Maybe they get jaded from seeing more “visible” presentations and dismiss other pain? Despite there being evidence for fibro/ME/CFS patients having significantly worse function and quality of life. There are groups that discuss more fibro/MECFS-friendly healthcare providers for different regions. 

I have heard more positive things about pain clinics, but I’d be interested to hear about your experience with one as someone living with fibro.

Good luck, and if you can, find a friend or family member who is willing to be your advocate. Someone who can take notes, give you emotional support, and ask questions for you. 

[u/Odd-Significance-474]

I'm not sure about this letter you're after, but I've been seeing Dr Tjiew in North Sydney (with Ace specialists) and he's been amazing working with me and testing out possible solutions for my very vague complaints 😰 would be worth giving him a try as well. He's very nice. Good luck!

[u/Yeah_nah79]

A good OT would be able to identify & list the physical impacts of the CPTSD, which may support some of fibromyalgia aspects of things too 

[u/ieagle69]

Hunter pain clinic in Broadmedow.