Does anyone’s partner have ankylosing spondylitis and any advice?

[Waheymum]

It looks like DH is going to be diagnosed with seeankylosing spondylitis. Does anyone here (or their DH/DP) have it? Any tips (for him or for me)?

I wonder whether you could join this organisation, OP.

https://nass.co.uk/get-involved/become-a-member/

Mick Mars from Motley Cru has it. There's chapters about what it is like for him in The Dirt, the band's autobiography.

My adult son has it. He was diagnosed as a child.

Currently taking etanercept to control inflammation. Works well, but my son still gets morning pain, and occaisional bouts of uveitis.

Hopd your husband is coping? It can he very painful.

Sorry, I also meant to say do not under estimate the fatigue part of it. That bit has really crept upon my son and I think he was in denial as a kid, but is starting to realise the fatigue part is just as debilitating as the pain at times.

So gentle exercise and proper rest are really important

@Waheymum

Just to add that their website explains that Axial Spondyloarthritis is an umbrella term which includes Ankylosing Spondylitis.

Zach kornfeld, one of the YouTube ‘try guys’ has it.
he did a video explaining it when first diagnosed

and I think he may have done updates since. Thought I’d mention in case your DH might find some comfort in seeing another man talk about his life with it

Yes, DH has it. For several years he was taking Naproxen almost daily (not ideal), but he is now on a stretching and exercise regime which has really helped, and hardly ever has to take painkillers for it. He does still get flares of pain and fatigue - it seems to get worse when he has had a period of bad sleep (and he possibly flares after alcohol so he rarely drinks now).

I can’t stress enough the impact the daily stretching, regular weight-bearing exercise and a decent (fairly non-inflammatory) diet has had on DH.

This course is what really turned it round for DH
nass.co.uk/managing-my-as/exercise/rehabilitation-courses/

DH was diagnosed when he was 17 and in the last 40 years medication has come on in leaps and bounds. He has had bouts of intense pain and fatigue, but currently is doing really well, he injects Erelzi once a week which properly controls his inflammation levels. He also had both hips replaced which was a game changer, but the current medication has been transformative.

Thankyou, this part of it is what I'm currently finding really tough (we have a toddler and a baby), I'm disabled- had a stroke as a teenager- and have to ignore/'overcome'- if only!- my own fatigue to compensate.

On a neuroscience (ha! I'm not educated in science at all!) note... Is the fatigue like neurological/stroke fatigue- exhaustion because one bit of the brain has to compensate for another, parenting fatigue- broken nights, breastfeeding day and night, needing to wear out the older child so they'll nap, normal exercising fatigue (like if you've been for a long run), or something totally different? Is it physical, mental, both? Thankyou in advance!

I can only really relay what my son tells me. He says its like a deep bone fatigue similar to having flu. Just impossible to push through. The fatigue generally is coming from the body dealing with huge amounts of inflammation, and if I remember correctly this does change your brain chemistry.
When the inflammation is well controlled, the fatigue is better. My son is young, but struggles hugely with flares, and the fatigue contributes to his depression. He is exhausted mentally and physically a lot of the time. He is struggling to work and attend university at times. It's had a huge effect on his mental health over the years (diagnosed at age 11).

Does your husband take any medication for it yet?

I have Axial Spondyloarthritis - which is the umbrella term used to cover Ankylosing Spondylitis (when the spine starts to fuse and damage shows on x-ray). I have visible changes on MRI but not x-ray.

Touch wood - mine is relatively well controlled. I do have morning pain and stiffness but like pp said, regular exercise and trying to eat and sleep well helps. Stress, fatigue, poor sleep can all kick off a flare. I also have a decent pillow set up which helps with the night time back pain - just sleeping with a small knee pillow between my knees and having one of those long pillows behind my back makes things a bit comfier. I take etoricoxib regularly but am not on any biologic medication at the moment. Is your husband likely to be put on biologics or will they try anti inflammatories?

Hey, to update, my DH is still under investigation for it so hasn't had offers of therapies. He's also told me to stop researching the condition and support groups and stuff: apparently he'll do that himself (yeah, right). I'm GOOD at research and networking, they're two of my skills.

@Waheymum

How is it diagnosed, OP?

When will he know for sure?

I have it. Diagnosed age 48 after many years of flares i I thought were sciatica. It took repeated episodes of uveitis before doctors took that seriously. I am not on any medication apart from amytriptyline to manage nerve pain due to the inflammation. The best management for me is to eat well as I get flared from too much sugar and bread. Also from stress. Hydrotherapy helps but strength training is where I have not done well in the past and am trying to do better now. NASS is helpful. I went to a conference for patients recently and the evidence summary was “start biologics, move to Spain, get a dog”. That was tongue in cheek of course but warm and dry weather helps (ie uk is shit!) as does exercise and stress reduction. Yoga is also useful but overstretching can cause issues without strength training. I learned that the hard way.

It's so great that you want to be supportive but it's such an individual condition that sometimes research just brings up more worries if you see what I mean? Some people really struggle with disease progression and some are fine.
I've never used a support group or anything like that and with the exception of my husband and a couple of friends noone even knows I have it! If I'm having a bad day I just say I have a bit of backache as everyone can sympathise with that.