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Marathons?! #283190 06/04/19 05:42 AM
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Hi - I'm new around here so be gentle!

I was diagnosed with AS about 20 years ago in my mid twenties, but symptoms were so mild that I managed with occasional ibuprofen at the change of seasons to relieve some gentle lower back pain.

I led a fairly sedentary lifestyle - watching too much TV, sitting at a desk all day at work and generally not doing any exercise. Then I hit 40 and did a classic mid-life crisis thing: I decided I should get fit!

3rd Oct 2013 I strapped on a pair of trainer for the first time and ran around the block. It was about 2.5km (less than 2 miles) and it took me over 20 minutes before I came home exhausted and lay panting on the living room floor. I was less fit than I thought - this required a plan!
A day or so later I had a plan: 5km in 30 minutes, 10km in an hour, a half marathon in 2 hours and perhaps a marathon.... with a crazy long term life goal of 4hrs!

<lots of details long story goes here>

18 months later I was a dedicated runner, loving my new found energy and having run my first marathon on Australia's Gold Coast in 3hrs 57 minutes! I needed a new goal!!!!!!

In September 2015 I went to Berlin and ran the Berlin Marathon (4:11 - but with a massive head cold)... it was amazing.... I was hooked and my new goal was clear: to complete all 6 World Marathon Major events! In October 2016 I ran Chicago (3:38), April 2017 London (3:36) and then set my mind on getting quicker chasing the elusive qualifier for Boston rather than continued globe trotting. In Oct 2017 I ran 3:18 in Melbourne surpassing all my wildest dreams and qualifying for the Boston Marathon in 2019!!!

Then 2018 happened....

I was tracking along nicely, feeling good until about October when I had a persistent hamstring tendinopathy that refused to go away and made running awkward and sitting down painful. I rested... and rested.... and did the right physio exercises. But when I got back to running I was tired... so very very tired...

My pace dropped and kept dropping - so I listened to my body and tried to back off and not do so much. By christmas I knew I had to start ramping up training to get back into shape for Boston in April, but at the end of January in the sweltering humid heat of Brisbane where I live, I got to the end of a 30km (20 mile) run and almost collapsed. I hit a fever, I got the sweats and my neck and shoulders stiffened up in a way they had never done before.

Over the next few weeks I ceased running completely in an attempt to recover - but my body struggled. Sore back, neck and shoulders became a regular thing along with various other symptoms.

With flights, accommodation and a lifetime dream at stake I was determined to take my spot in Boston, so without any training and feeling a little under the weather I started the race. I ran the first 25km but in a deliberate predetermined strategy, slowed to a walk/run for 10km and then walked the remainder finishing in 5:28 and really enjoying the occasion.

Of course the following couple of days I could hardly walk (as normal) and compounded that by jumping on a plane for 24 hours to get home!

2 Days later my body seized up, fevers, sweats, gastric unpleasantness and world record disabling stiffness hit me. My GP referred me to hospital where I was kept for 9 days with doctors unsure what collection of maladies were in play.

Some time later- they had reached a "Dr House" like conclusion: travel and exhaustion had weakened the immune system and allowed me to pick up both a gastric virus of some unidentified kind AND tonsilitis... My body went in to bat and fired up the immune system - but didnt stop firing. Autoimmune warfare kicked off and my AS went into overdrive.

Now some weeks later and all the infection nonsense and symptoms are gone - but I remain as inflamed as ever struggling with basic things like walking (feet and knees), typing (knuckles) and of course moving my neck is near impossible.

I'll have a rheumatology appointment in a few weeks and am hoping that some magic drugs will get me back to my 'normal' and that this isnt a 'new normal'. I have unfinished business: New York and Tokyo marathons still need to be completed!!!


Anyone else experienced the motherload of flare-ups after prolonged exercise and managed to get back to it? Give me some hope people!!!!!

Re: Marathons?! [Re: DadAgain] #283298 06/24/19 11:56 PM
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Hi DadAgain,

I can't really help with the flareup after a marathon thing... but I am interested if things have progressed for you?

I am in Sydney. No diagnosis for me but many symptoms similar to what you report. Something inflammatory going on, but not sure what. Similar story for me. I started cycling in my late 30s. Ramped that up for an event. Initial issues were tendonitis in my achilles, but have progressed to most of my back/hips/shoulders/neck. I am trialling Brenzys (Enbrel) at the moment. 2 weeks in an no benefit yet, but still early days. If it works for me I have little hope of getting it on PBS though unfortunately.

Cheers!

Re: Marathons?! [Re: DadAgain] #283302 06/26/19 12:42 AM
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I met with a doctor who was recommended to me and after a long conversation about chronic fatigue and autoimmune he sent me packing with some low dose naltrexone.

Its not on PBS - but is a fairly cheap drug. Its too early to tell, but so far it seems like all my inflammatory responses have really died down and I feel kind of human again! I've got months and months of non-fitness to overcome and I'm not in a hurry to rush it, but I'm really hoping that I can start to build back up again.

I ran 4km last weekend very very slowly and had no ill-effects. I realise that sounds crazy for a marathon runner to even question, but 2 weeks that before I ran 5km and suffered crippling DOMS for 4 days afterwards?! So I'm being very very careful not to overdo it.

Fingers crossed this upturn continues - googling "low dose naltrexone" for autoimmune or chronic fatigue symptoms makes for some fascinating reading though!

Re: Marathons?! [Re: DadAgain] #283303 06/27/19 04:35 AM
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Thanks DadAgain... keep us updated in the response to the treatment. I might have to work out who I can see to try that.


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