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questioning where to from here...

  • joannei
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3 years 1 week ago #22858 by joannei
joannei created the topic: questioning where to from here...
I've had a rollercoaster introduction to chronic conditions...
In March last year I was diagnosed with active rheumatoid arthritis (sero positive) and in Jan this year my GP diagnosed fibromyalgia (confirmed by my rheumatologist).
I find myself questioning if my pain is 'chronic'... yes, its constant, but due to many intolerances I take very minimal medication.
I have read about pain management clinics but wonder if I would be taken seriously - the total of my pain relief in the last 3 months has been 2 targin 5/2.5, 4 Panadol osteo and 2 diazapan 5mg (all of which make me drowsy except the Panadol osteo so cant take them on my 4 working days)... everything I read indicates an encouragement to reduce 'dependency/reliance' on medication - I cant take any less!
My only consistent medications are RA specific, but I'm unsure if they are causing some of the 'neurological' symptoms or if its the fibromyalgia because I'm not taking medication specifically for it?
Also, I feel that I'm not taken particularly seriously because I partially choose (and partially my body chooses for me) not to take any further medications but to generally seek other methods (such as distraction).
I have some decisions to make regarding work, but at the moment I cant think beyond the next few days, or the next specialist visit to see if they will dismiss me as the neuro has, or the next scan to see if 'something' shows up to explain how different I am from 18 months ago :(
I would like to investigate vagus nerve stimulation but don't really know where to start or if I have attempted enough 'conventional' medication to even enquire about it.
Just feeling quite lost and lacking in a direction that might help my health best and wondered if anyone has had similar experiences/conditions and how they figured things out?

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3 years 2 days ago #22894 by Marley
Marley replied the topic: questioning where to from here...
Hi Joannei
You ask “Where to from here?”
I can only suggest the Arthritis Foundation and waiting lists for Pain Clinics. I have posted many times, if you are not on the waiting list, you won’t get an appointment offer and you won’t know what they will offer. If there is a waiting list, I suggest getting on as many as possible, even if you don't think they will help. Until you get that appointment, you will never know, and don't be discouraged by the length of the waiting list.
Maybe reading through other Posts might offer something for thought.
The Chronic Pain Foundation has some resources on their website, chronicpainaustralia.org.au, or maybe counselling could help.
Marley

Once I could laugh with everyone
Once I could see the good to me
Holding the world inside
Now the world is grey to me
Nobody can see you gotta believe it
Oh oh the night comes down
And I get afraid of losing my way
Oh oh the night comes down
And it’s dark again
“The Night Comes Down” Queen

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3 years 3 hours ago #22904 by joannei
joannei replied the topic: questioning where to from here...
Hi Marley,
I see a psychologist as part of my mental health plan, and a dietician as part of my chronic health plan...
I've asked my GP about a referral (and am willing to wait on the list) but at he doesnt think there would be any benefit to a pain management clinic :(
Part of it is because I have a lot of stress going on at the moment through my workplace, and I think he wants to wait and see what my level of pain is like once things resolve themselves a bit (one way or the other)!
I spoke to the Epworth pain management clinic and they are happy to organise an initial meeting when I am in Melbourne for another specialist in Sept. I plan to speak to my psychologist next week and see if she would be willing to do a referral to at least provide me with access to the initial assessment.
Thanks for the reply :)

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2 years 11 months ago #22905 by Marley
Marley replied the topic: questioning where to from here...
Hi Joannei

Your Dr is right about stress and pain being connected. There are many posts that say when stress levels are high, pain is increased. I don't know if a massage would be of benefit. There are proven benefits for both pain and stress.

There are many different types of massage performed by qualified and unqualified people. I believe going into massage requires the right head-set, whether it be a soft general relaxation massage or a deep tissue or any other sort of massage, they all have different aims and costs. If you think it could help, it might be worth discussing with your doc or psychologist.

I am glad you see a psychologist and dietician as they can help with all sorts of things. You are lucky Epworth Pain Management Clinic will organise another specialist in September. It might feel like a long wait, hopefully your stress will have reduced, and maybe just knowing there will be help in September will reduce some of you stress just a little.

Thank you for your response and update.
Marley

Once I could laugh with everyone
Once I could see the good to me
Holding the world inside
Now the world is grey to me
Nobody can see you gotta believe it
Oh oh the night comes down
And I get afraid of losing my way
Oh oh the night comes down
And it’s dark again
“The Night Comes Down” Queen

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2 years 11 months ago #22913 by illeatyu
illeatyu replied the topic: questioning where to from here...
Hi Joannei,

First and foremost, Your Pain and Mental state ARE linked.

I ended up with Major Depression and attempted suicide, because I was in Pain and lots of it, was being bullied at work, and had a family member develop Dementia, and I had to try and cope with all of that on my own.

So ask your Psychologist about ways to reduce your stress, ask about depression and pain, and ask how you tell if you are on the slope. If I knew then what I knew now, I would have gotten professional help much, much sooner. Once the depression started the pain spiked and off we went, depression opens the pain gates in your brain and magnifies the pain, the pain then intensifies the depression and around we go.

I have tried quite a few alternatives to medicine and I found Bowen Therapy to be very effective, please make sure that the person is a member of the association and is qualified.

www.bowtech.com/WebsiteProj/Pages/About/Welcome.aspx

Just because you are unable to take medication does not lessen the impact Pain will have on your life, and one of the skills you will learn at a good pain clinic is how to cope with the impact, the Pain is a very real and huge part of your life, but so is the impact it will have and the grieving process you go through for your old life, and a psychologist who has experience with Chronic pain will be able to help you through this next stage of your life.

Talk to your doctor about that side of the pain and he may well change his mind and refer you.

Anyway I hope this helps :)

Illeatyu

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.

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