"tell us what it's like to be you"
Hi - I'm 29 years old and I have Rheumatoid Arthritis. I've had it for probably just over 2 years now. Right now my Rheumatologist has me on a lower dose of Plaquenil and Prednisone (20 days - 5 days each dose) and it's not doing anything for me (besides making me extremely hungry).
I am a receptionist and find it hard to work (part-time, Monday to Friday) due to the pain in my hands/fingers/wrists. It also seems to be spreading to my other joints (knees, elbows, ankles/feet).
This unfortunately has caused my anxiety/depression to grow worse. I've started seeing someone to try to improve my way of thinking during this time so will see how that goes! My mood isn't great and I get annoyed quite easily and snap - sorry in advance to my friends and family!
Before I got RA, I thought only 'old' people got it. I am not sure how you manage the condition/pain but please tell me your secret :)
Vanessa, I’m Matthew, a volunteer on the MOVE helpline. Apart from issuing the invitation to call us (1800 263 265) if you’d like to discuss your challenges in depth, I need to say: don’t take your own strength for granted, strength evidenced by your decision to “see someone” for help to sustain your mental well-being. It takes guts and brains to reach out. That decision alone shows you have what it takes to meet the challenges, with the right external supports – which we’d like to help you discover! Your concern about the impact of your current struggle on family and friends brings to mind my own mental health issues as a younger adult, stemming from a chronic musculoskeletal (MSK) condition. The origin was guilt over the “burden” I placed on my loved ones, until I finally realised that sharing burdens is what love is for – as long as we stay aware of their struggles as well as our own, there’s no place for guilt within that cycle of loving care.
I am 49 years old, suffering from extreme pain for several years now. My doctor and his associate has not actually labelled my condition but prescribed me with pain relieving medications ie: Brufen 400mg 2 x twice daily (inflammation), Lyrica 150mg 1 x twice daily & Allegron 10mg 2 nightly. Although the medication helps ease the pain, it does not completely resolve it. On a recent visit to a different doctor (at the same Practice) he looked at my records and medications and told me it seems I may have Fibromyalgia, although he did say that most doctors do not like to put a definite label on it and it is something I should investigate myself further.
I am constantly exhausted and as soon as I sit and try to relax, I get random pain shooting from all parts of my body. Some pain can be like mild pressure to extreme stabbing which could last from seconds to minutes. This pain is constant and exhausting. I sit in silence and endure the pain whilst my family are unaware of what I am going through. I sometimes feel depressed and just want to cry but I do my best to save face for my wife and children.
I am searching for any type of support and any method/management to help with the condition (although I am not exactly sure what I have). I searched the internet for Fibromyalgia and printed an information sheet which perfectly describes my Symptoms and condition. I then found "Move muscle, bone & joint health" and hopefully can get some answers and/or advice to help me manage my condition better.
Rob, I’m Matthew, a volunteer on the MOVE helpline. As a middle-aged man living with a musculoskeletal (MSK) condition causing chronic pain, I directly relate to the physical and mental distress you describe so eloquently. We’re here precisely for people in your situation: please consider calling our helpline (1800 263 265), where you can take as long as you need to describe your current challenges, and we can outline some progressive options for you, including: your best path through the medical system, further resources of social support for your physical and mental well-being, and direction on such aspects of self-management as therapeutic exercise and appropriate diet. Please know that even though your challenge is very personal, you don’t have to meet it alone: hope we hear from you soon.
I need both of my knees replaced. Add some gnarly ganglions under a knee cap and around a ligament and you have a recipe for pure misery. I used to weight lift, train, ride my horses, run them out at shows, sit cross legged, wear heels and not have to think about every damned movement I make.
Doctor's remedy is to turn me into a medical junkie. Norspan, endone, tramadol, meloxicam, naprosyn... sleepers for the nights when pain is just too much. And I can't. I can't take all that **** because I have to function for my small child. It impacts EVERYTHING. I think about how I sit, how I get up, how I sleep (or don't) how I get up and down off the ground, how to try not to limp as much. How to not be basically disabled. How to be positive when all I want to do is take a pill or three and wish the pain away for the few short hours they work. How to be a be a better mother. A better wife. How to not mentally throat punch anyone when they moan about a minor pain.
I suffer from so much pain day in and day out. I can hardly do anything anymore. I stopped seeing friends, stopped playing my sport, and I have now recently stopped going to the gym because it has gotten worse. I am seeing a GP and a specialist, one says its just pain - just take Panadol. The other says its the nerves in my body and they're all out of whack... I should be getting a referral to a rheumatologist sometime soon.
I have been kicked out of Uni because they wanted me to work on my health, I felt a little better a while later, and I tried Tafe... I was kicked out for my health.
I am 21 years old, and I have no life. I am miserable. I don't know what to do anymore.
I'm not always thrilled to be one of the 6.8 million Australians to have a musculoskeletal condition. But, like the rest of us, I have learnt to adjust my life to accommodate the burdens of muscle, bone and joint health condition. It's damn annoying putting your swollen hand up to say you are challenged by RA when you are a mid 40's mum just trying to keep up with an active
It's damn annoying putting your swollen hand up to say you are challenged by RA when you are a mid 40's mum just trying to keep up with an active family, and manage a business.
My \#PainfulTruth is that I've lived with RA for 4 years now. I naively thought it was something 'old people' get and I was a little embarrassed as to how others would perceive me.
Like many others, I've moved through the stages of sheer pain, shock, grief, annoyance, acceptance and towards taking charge of a condition that has done its utmost to take control of me. I have good days, bad days and days that make me yelp.
I take great care to keep walking, use warm water exercise, I see a physio and a rheumatologist, I try to maintain a non-inflammatory die, I have a laugh with mates when it gets too much and I welcome my biologics to help me move forward. RA is part of my life now. It's not going away, so I have taken charge of its place in my life. My kids affectionately call my EpiPen "El Jabby" and hand me a cuppa with my sharps container. I am one of the fortunate ones though who has facilitated a freelance work from home life and created a business to work around the challenges.
I've learnt to adjust and accommodate an invisible illness that is often incredibly difficult to ignore when your body fights with itself.
Still, like 6.8 million others I put on the happiest face I can and get through my day. Reports and research like this are important in communicating out how we can do more than just get through. Best practice in treatment and funding gives us all the best chance we can to be productive contributors no matter our conditions.
Imagine being in your early 20s and no longer being able to brush your hair, struggling to bend your knees to sit on a toilet and use your fingers to press the flush button. Imagine not being able to afford a wheelchair so you use an office chair to try and still get yourself around the house. Limping to work everyday and feeling like your veins are trying to strangle all your joints the inflammation pressure is that intense! The hardest part is... knowing this is chronic and you have to manage this for the rest of your life.
My wife has long suffered with back pain and arthritis, even though she is only 30 years old!
The last 8 months of my rehab have been very difficult. Being a professional Footballer and not being able to run was a struggle. To prevent this from happening again I have dedicated myself to prehab, rehab, and strengthening my body so this doesn't happen again. Download + read the report for authenticity. @movehealthaus #everybodyMOVE #PainfulTruths
At 41 I had spinal surgery after my second round of not being able to walk due to a recurring and multiple bulging disk issues (subsequently I diagnosed w early onset arthritis in my spine) - I was unable to work, I was prescribed opioids, I gained weight, I was depressed and my recovery was long. I was one of the lucky ones who had support from my family on this journey.
I urge all of you to promote the findings of this recent research report and support MOVE muscle, bone & joint health to help make the changes required to deliver best practice in this sector - and improve the lives and productivity of people w these debilitating conditions.
#EverybodyMOVE #PainfulTruths @movehealthaus