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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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DadAgain Offline OP
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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.

Re: Marathons?! [Re: DadAgain] #283708 11/05/19 10:05 PM
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Figured I'd give a bit of an update:

LDN treatment has continued and I haven't had any kind of inflammatory flare-ups since May. In July I started gradually adding running into my life again and found my fitness was appalling. The months of fatigue and non-exercise had definitely taken their toll and I was genuinely scared that pushing too hard would provoke another flare-up.

Garmin watches have a "VO2 Max" estimate based on your monitored heart rate and exercise you log and although its crude and inaccurate compared to a proper exercise lab test, it does provide a benchmark for comparison on current fitness. In 2017 at my athletic peak when I ran a 3:18 marathon Garmin was reporting me to have a VO2Max measurement of 57 (fantasy number - but shows I was pretty fit at the time).

After coming out of the hospital in May and trying to start running again following several months of inactivity, this was down to 47 - and I could feel it. Slow running was hard, and I couldn't go further than 4 or 5km without being seriously exhausted.

Several months of gradually building things up and I've started to feel more like myself again. I'm running up to 50-60km a week, my long run pace is back to a sensible (if not grease lightning) pace and in the last couple of weeks I've even started to add a sprint interval session into my routine.
Garmin is now telling me my VO2Max is back to 54 - so not quite "best ever", but still pretty impressive.

I have a 30km race on Gold Coast in December that I'm being an official pace runner for (its always a tough event dealing with the sweltering summer heat [30C+, 80-90% humidity] and each year I've run it I've finished swearing it's as hard as any marathon Ive ever done despite the shorter distance).

In short - I feel like its been a long journey but I'm back on track. Whether thats just due to time, or whether the LDN is working magic I'm not sure.

Re: Marathons?! [Re: DadAgain] #283925 01/14/20 08:11 AM
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What happened Dadagain? Do you only take LDN as treatment? You know I had a sore throat which gradually is leaving but my version of inflammatory tendons all around is not.

Re: Marathons?! [Re: DadAgain] #284067 02/26/20 05:49 AM
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Onice1: Yes I'm only taking LDN now and I'm pretty happy with it.

This summer has been very tough exercise-wise but that's not to do with any AS symptoms. Its been spectacularly hot and humid all summer (and smokey at times from bushfires) and 5 times now this summer I've stopped mid-run realising that I was suffering from heat stress and continuing would have potentially serious consequences.

The 30km race I mentioned in previous post was one of those times. I got to 24km before realising I was overheating badly so stopped.. had a 5-second shower beside the path (path behind the beaches has showers every few hundred metres) which cooled me down and made me feel fine. As soon as I started running again my temperature shot straight back up and I just had to stop and walk. It was frustrating as hell - but better than being hospitalised with heat stroke!

Just in the last week the temperature seems to have cooled and I'm feeling better and fitter already. Assuming I don't get a place to run the NY marathon in November I'll probably sign up to run Sydney in September and that will give me the motivation to step up the training and see where I'm really at fitness-wise over the manageable winter months before it heats up again.


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