Lived Experience Forum

[flybluebird]

Following on is our next question @Oshun_Blu 

Question 4. What is a pain specialist? How can they help?

[Oshun_Blu]

Q4. What is a pain specialist? How can they help?

Pain management specialists are doctors who specialise in diagnosing and treating people suffering from pain. A pain management specialist develops a treatment plan to relieve, reduce, or manage pain, and can help some patients return to everyday activities without surgery or a heavy reliance on medication. To make sure all the patient's needs are met, the pain management specialist coordinates care through an interdisciplinary team of health professionals, including specialist physiotherapists and psychologists. Pain specialists can be a huge role in supporting quality of life for those living with chronic pain, but like any field of medicine there isn’t always a ‘one size fits all approach’ and sometimes there is a lot of trial-and-error in finding appropriate intervention(s). You can read more about the role of a pain specialist here:

• https://healthinfo.healthengine.com.au/pain-management  
• https://www.practicalpainmanagement.com/patient/resources/pain-self-management/letter-pain-providers...

[Shaz51]

@Oshun_Blu , @flybluebird , @cloudcore , @Bow 

One thing that I found which was helpful but I am unable to do now is Having a Epsom salt bath 

[Shaz51]

Also cutting back on our workload  too and having the afternoon off  @Oshun_Blu 

[Oshun_Blu]

In addition, accessing a pain specialist can usually be explored through a GP or another specialist like a rheumatologist and requesting a referral. In Australia, there is a fair bit of training involved with becoming a pain specialist as it requires the clinician to do additional study/training on top of their existing area of specialisation! Because of this, a neurological pain specialist or rheumatoid pain specialist may not actually be appropriate for individuals who may like with say, CKD (chronic kidney disease) as the care may be mismatched. So like anything, it's good to shop around if you do not feel comfortable with a particular pain specialist!

[flybluebird]

Oh thats such a shame you can no longer have those baths @Shaz51 

I have learnt from my family member who manages their body pains that yes it can be tough to get moving at first, but the more natural body movement throughout the day the less the pain - some days. 

[Shaz51]

Yes @flybluebird  it is finding that right balance each day of just doing enough without doing too much 

Yes we had lost everything in our house fire  15 months ago now xx 

@Oshun_Blu 

[flybluebird]

Following on we have our next question;

Question 5. What ways can people around us become more informed about chronic pain & the impact it has on people living with it?

[Oshun_Blu]

Q5. What ways can people around us become more informed about chronic pain & the impact it has on people living with it?

• ‘This Way Up’ has a great beginners guide to learning about chronic pain: https://thiswayup.org.au/learning-hub/chronic-pain-explained/ And practical ways to support a loved one with chronic pain: https://thiswayup.org.au/helpful-steps-to-support-someone-experiencing-chronic-pain/

• If you’re ready cover more than just the basics of chronic pain, you may like to check out this HUGE resource guide from Northern Pain Centre: The Northern Pain Centre also has a HUGE resource guide here: https://www.northernpaincentre.com.au/wellness/chronic-pain-relationships/chronic-pain-and-relations...

• I also love this blog post from the Practical Pain Management website entitled, ‘6 Ways to be a Friend to a Friend Living with Chronic Pain’: https://www.practicalpainmanagement.com/patient/treatments/mental-and-emotional-therapy/6-ways-be-fr...

But beyond these, I think the most wonderful way to learn about someone’s experience is to ask them about their experience and listen without attaching judgement or meaning to it. Reading all the articles you can get your hands on is fantastic, but if you want to learn about how a particular condition or diagnosis directly impacts the life of a loved one, you must be willing to sit with them in their experience because everyone will have similarities & huge differences within any given experience of the same condition. Always ask rather than assume and encourage but do not criticise.

Sometimes asking about our pain will lead to conversations about supportive strategies, but not always. Sometimes we just need you to hear us without jumping in to find a solution for us. We may have a whole team of professionals working with us to try and find some answers, which can sometimes leave us feeling more like a science experiment than a human being. Alternatively, we might be under the care of inexperienced clinicians who do not know much or anything about our condition and therefore must become experts and self-advocates to protect our safety. All these things can be exhausting and often very traumatising, so it is important for us to be reminded that we are always worthy of respectful and compassionate support.

[Oshun_Blu]

@Shaz51 I'm sorry to hear that everything was lost in the fire! I can imagine that the stress from that experience could have long lasting impacts as well. How are you going with your recovery from it all?