Calling Creaky Climbers - Ankylosing Spondylosis

New Topic
This topic has been archived, and won't accept reply postings.
 Tigger 20 Jun 2022

So at the ripe old age of 32 I've recently been diagnosed with Ankylosing Spondylosis (I'll add it to my growing list of ailments!) . It may still be that it is infact Psoriatic Arthritis with Axial involvement but that is yet to be seen.

I'm 3 weeks into my journey with immune suppressants (TNF inhibitor), but am wondering if there is anyone else out there who manages this disease alongside training/climbing?

I'm still going well at the moment but I'm finding that the fatigue is the hardest obstical to overcome tbh and after a few routes I'm often done for the day. I have played around a little with diet and take a few suppliments religiously (minimal sugar, booze and red meat etc...) but haven't committed to a full starch free diet as of yet (looks pretty intimidating).

Is there anyone out there who's willing to share their story or any tips or tricks with me? Either PM or chat openly I'm happy either way.

Cheers
Michael

Post edited at 09:49
OP Tigger 20 Jun 2022
In reply to Tigger:

Typo: Ankylosing spondylitis

 angry pirate 20 Jun 2022
In reply to Tigger:

I've had it for about 20 years now. Initially misdiagnosed as soft tissue injuries from running and treated with anti-inflammatories. I eventually became allergic to those (which ironically inflamed everything) and came to within a whisker of anti-TNF drugs when the consultant suggested ibuprofen (despite my allergy to NSAIDs) which have worked a treat.

I've bagged off the running and cycle instead. I have to be a bit careful climbing as I do pick up injuries more frequently than in my youth as the cartilage in my sacroiliac joint was eaten my immune system years ago so the bones do like a grind now and again. This triggered a bad bout of sciatica last October that took until mid Jan before I could walk more than a few hundred metres.

I tend to climb indoors more nowadays as it fits round other commitments better and am pretty much a punter (V4-5 indoors). Pull ups are out as they trigger tennis elbow. I suspect this is linked to AS but who knows? YMMV if you train harder. 

All in all though, I can still walk, climb, cycle, camp, winter climb etc. without too much drama. considering the early days where it would take half an hour to get out of bed and down stairs, I'll take this as a huge win!

 liss 20 Jun 2022
In reply to Tigger:

Hi Tigger, I also have AS.  I am 45 now and was diagnosed in my early 30s (but symptomatic since I was 21 or 22).  I have only been climbing for the last couple of years but was active in mountain sports (skiing and ski touring) before that, so have a fair bit of experience managing AS in order to stay active. 

First off it is great that you have a diagnosis – appreciate it may feel like a bit of a shock at this point but now that you are ‘in the system’ you will have access to a lot more resources, and there is a lot you can do with treatment to improve your symptoms.  Likewise IMV it is really good that you have access to biologics already to help limit any further joint damage.  Overall you should hopefully start to feel much better soon!

Hints and tips: I can’t recommend physiotherapy strongly enough, which you should hopefully be able to access through your rheumatology team, ideally a physio with some specialist knowledge of AS who can point you to specific and appropriate strengthening exercises and stretches.  I do about an hour a day of rehab/small muscle group strengthening/stretching and really notice the difference if I miss it.  I actually have way above average hip flexibility from years of consciously stretching out my hips despite the AS being worst in my sacroiliac joints!  Other people I know with AS would recommend Pilates for similar reasons.  You might also find it helpful to look into (if you haven’t already) sports massage and/or foam rolling to help reduce any knock-on muscle spasms being caused by your joint stiffness. 

I think it’s also worth cultivating a good and active relationship with your rheumatology team as they may be able to give you other short term interventions to help manage flares.  I had specialist hand physio for a bit when the AS was particularly bad in my finger joints and I’ve found steroid injections and hydrotherapy both help with flares more generally.  Many local branches of NASS (National Ankylosing Spondylitis Society) run hydrotherapy sessions for a small fee if you are struggling to access this through the NHS.

Fatigue is trickier to advise on as it seems very specific to the individual and I fear this may be more of a trial-and-error process for you. My fatigue pattern tends to be that I can do two tough days in a row but then need a day of almost total rest to recover. However like angrypirate I would reassure you that it is more than possible to stay active with AS and in contrast to e.g. running, I have found climbing one of the best sports to manage with the condition because it is so low-impact despite being intensive. The biologics should also help with the fatigue once they kick in as it is a side-effect of the inflammatory response.

That’s probably quite enough to start with but if there’s anything else it would be helpful to know, do shout.

OP Tigger 20 Jun 2022
In reply to angry pirate:

Yea I had my first flair at the end of last year and ended up with AS as the diagnosis, up until then I had only been noticing a little stiffness in my hips for a few month's prior.

I guess the blessing is that I've caught it very early (less than 18 months after onset) and have been put straight onto TNF inhibitors.

Though since getting on medication though I have noticed that a shoulder injury from 2017 that never seemed to heal properly (got to 90%/95%) has improved massively.

I'm trying a few bits and bobs with diet as well, hopefully I'll be able to get into remission if I behave!

OP Tigger 20 Jun 2022
In reply to liss:

Thanks for all the info! My Rheumatology team are unfortunately very stretched atm but I've got private cover through work that allows me an allotted number of physio sessions each year, so I'll start taking advantage of those I think.

As for other joints my knees suffer a bit and my big right toe unfortunately (volterol to the rescue!).

Like you say, very early days for me and hopefully the meds will kick in more full before too long.

OP Tigger 21 Jun 2022

I came across this article

https://www.ukclimbing.com/articles/features/charlie_woodburn_-_climbing_th...

There's hope for us mortals yet I guess. I have experimented with removing dairy
which didn't seem to make much difference.

I'm now trying a very low Starch diet for 6 weeks and will then reintroduce some (sweet potatoe and then rye bread) and see what happens.

I suspect that as I'm HLA B27 negative, diet may not have a huge impact as the diet seems to be targeted at redicing a bacteria that may only be a problem for HLA B27 positive patients.

I'll report back.

 liss 21 Jun 2022
In reply to Tigger:

Really inspirational article - thanks for posting.  And good luck with the diet etc - hope you see some benefit from that soon.

OP Tigger 26 Jun 2022
In reply to liss:

Joint wise It'll be hard to separate diet gains and immuno-supressant gains. Though I've got to say that the diet has made my gut much much happier in a very short period of time (3 days).


It also has reduced fatigue/brain fog considerably, I'm putting the mental boost down to the diet rather than the drugs, as the diet was started 1 week before my last injection and cleared up my head to the best it's been in a very long time.

Post edited at 14:09

New Topic
This topic has been archived, and won't accept reply postings.
Loading Notifications...