Raising awareness in Australia

Thanks for the reply I was starting to think I was alone in this.

I’m sorry to hear that I know the feeling to want a diagnosis so bad and then to find out you have this horrible disease. Have they said anything about starting treatment for you? 

I’m not quite sure how I’m going to go about getting people’s stories out there I was hopeing I would get more of a response on this page but unfortunately not but I guess it all starts with one person. My goal is to connect people in the real world or at least make it easier for people to contact help.

My story is all my life I have had back pain and I remember getting servere head aches as a child but being told I was just attention seeking which I can’t help be angry about because if someone had just listened to me my spine wouldn’t be as bad as it is and I might not have any pain at all but I can’t go back in time.

I was diagnosed this year I had been suffering severely for about 3 yrs and nothing helped I have been on enbrel for 3 months but it’s not working so I’m about to try humeria.

I recently got donated a electric chair to use till I can raise funds to buy my own I found out yesterday I need $40 000 and so far I have $300 in my go fund me page lol 

I hope you are feeling ok and aren’t suffering to much mentally ok getting your diagnosis I know I didn’t take it so well. X

Hi Kristy

It is lonely I know what you mean. I am a bit terrified. My flares have been awful the last three months and worse at night in bed. Totally fatigued all the time. My rheumatologist looked at my X-rays and basically your Sij are fused. Very raw squared and and spots of calcium. He is putting me on a TNF medication immediately. I have lived with this pain for so long now but the diagnosis is such a relief. Do you live in Australia ?

Hi 

I’m so sorry I could only imagine the pain your in my si joints are grade 3 so I’m one step away from having full joint fusion my self it is a scary concept for me. 

I know it’s terrifying I honestly thought I had it all figured out till I went to the mobility place and saw a occupational therapist and they put me in this chair and I didn’t realise just how much pain I was in till I Got some proper support.

If you can find a hydrotherapy pool near you I suggest going it honestly changed my life even just floating helps and there is this stuff at chemist warehouse called ZEN it’s near the denco rub it’s all natural and is my secret weapon it’s an odd sensation but I can’t live without It. 

I was very stubborn and felt quitting my job and using a wheelchair was giving up but the OT said to me “we give a little in one area to gain more” from my experience physios don’t know about our illness and push us to hard so if your getting the same result don’t be to hard on yourself.

I’m sorry if I don’t make sense some times I’m on a lot of pain medication. 

I live in Newcastle nsw where are you from? 

Hi Kristy thank god I am still very mobile. Walking is only an issue when I have a flare. I get really painful back spasms and at times I am terrified to move. My pain moves constantly up and down my spine into my hips and up to my neck. I have been self managing and self medicating for years. I am now searching for a Physio who knows how to treat AS. I went to a few practioners before I was diagnosed and ended up in worst pain so stopped going.  I have been doing pilates and that has helped but when you are in a flAre nothing helps!  It would be great to talk to others with this @@it disease. I live in Melbourne in Victoria x

That’s great!! I get so happy for people who can still walk while having this.

I know what you mean about the back spasms That’s why I’m awake now it feels like someone is grabbing your spine and shaking it for fun.

I know what you mean about the flare up pain it’s so intense that’s why I like the zen it sort of burns and tingles so it distracts you from the other pain.

I hope you find someone who can help it’s just a disease  not spoken about enough that’s why I want to do this awareness thing so physios do know what they are doing. 

My sisters personal trainer knows a fair bit I can ask her if she knows of anyone in Melbourne if you like? 

I looooovvvee Melbourne it’s such a crazy yet relaxing place it is like Sydney but prettier and I don’t get the stressed out Sydney vibe. 

Well if you would like to throw out any ideas you may have on what my next step should be to connect people please feel free to give me any ideas.

I was thinking a website so when people type AS Or spondyloarthritis they fight help straight away and not a Wikipedia definition.

X

Hi Kristy I am sorry to hear you had a bad night. I have  started dreading going to bed.  You sound  young. I am 56. Ji don’t think I realised that this disease could progress to your level of Disability.  Is there any chance of you ever being able to do without a wheelchair.

I am sorry to hear that as I said you sound young and should be living a wonderful life. AS is a b***h of a disease. 

In relation to promotion - have you seen this site? It is in USA and dedicated to AS sufferers. I have googled so many sites that my head is fried. I have to get up, get moving to shake my stiffness nd go to work. Talking you to has helped as it has made me realise I am so lucky to be mobile. Stay great. Patricia x

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