Ankylosing Spondylitus

Balibee

Balibee

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I am currently being tested for this disease. It is worrying me long term how this could affect me and my ability to ride, look after my horse etc.

At the moment I am in quite severe pain and can't even walk to the field and back on my own let alone lead my horse. The doc said hopefully once I have had couple of weeks on anti inflammatory drugs and pain killers that it should settle.


Does anyone on here suffer from this or similar and how do you cope?

Thanks

:)
 
Don't know if this helps but my dad suffers from this, before it was diagnosed he was in a lot of pain but since medication about 10 years ago he has been so much better and leads a normal life. He does have occasional flair ups but no where near as bad as before he was diagnosed. I do remember that he used to do alot of hydrotherapy to help ease his pain.
He doesnt ride but leads a very active live as a 60plus year old, still working full time, cycling etc
 
I really really hope that they can get you sorted, and keep you riding - but all I could see in the title of this post was Anky losing... :D :D

I have had a pretty rough year with my health so far, and it looks as though its going to be pestering me for many years to come yet :(, and I have also gone through the "what if I can't ride" stage. Luckily for me I, although I had about 4 months that I couldn't ride, I have started riding again for now. :)

I will keep my fingers crossed for you, and if you do test positive for it, I hope that they will be able to keep you ok with pain meds xx
 
That's great news queenb!

This is exactly what I hope for! As long as I can keep my horse and keep active I will be a happy bunny!

I can cope with the thought of occasinal flare ups, it's just been so difficult the last couple of months that the thought of thst long term just makes me shudder!
 
Flo_Bell said:
I really really hope that they can get you sorted, and keep you riding - but all I could see in the title of this post was Anky losing... :D :D

I have had a pretty rough year with my health so far, and it looks as though its going to be pestering me for many years to come yet :(, and I have also gone through the "what if I can't ride" stage. Luckily for me I, although I had about 4 months that I couldn't ride, I have started riding again for now. :)

I will keep my fingers crossed for you, and if you do test positive for it, I hope that they will be able to keep you ok with pain meds xx
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Thanks :)

It is horrible when you can't ride and just get on with things. I waited so long for my children to get a bit older to get a horse that I can't bear the thought after a 16 year wait that I would lose it all again !

Good luck with your riding, hope it continues to go well :) x
 
Balibee said:
Thanks :)

It is horrible when you can't ride and just get on with things. I waited so long for my children to get a bit older to get a horse that I can't bear the thought after a 16 year wait that I would lose it all again !

Good luck with your riding, hope it continues to go well :) x
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Thx me dear. I'm making the most of it, as much as I can, this side of Christmas, as I'm going to have to have an op early next year :( Very scary prospect, but I guess if it fixes me in the long term, then happy days! :) If only I could manage to get the treatment / help I need, without having to go into hospital. I spent 2 weeks in hospital in May, and it gave me nightmares for weeks after when I got out!

The docs seems to be able to make all sorts happen, even when your health is right up the swanny, so I really hope that they will keep you riding. My consultant even asks after my horses now! :) xx
 
I have this!!! :D
The thing with this - the key is keeping fit! I got passed this from my Dad - it is generally hereditry, but normally affects males more than females. People are normally diagnosed young - I was 15 - how old are you? I had blood tests to see if I had the gene, and then a full body scan thing to confirm I had it. I was initially on strong ibruprofen, but at that amount it made me vomit - bad, so don't generally take anything until I am sore. The pain subsided and I carried on with my life - I am 32 now. I very rarely have a 'flare up', which is normally the result of doing something stupid, like going for a run out of the blue - the next day, I will not be able to move. The worst I have ever been is stuck in bed for 2 days unable to move at all, and that was after running around playing football in the cold, the pain was excrutiating. I also get bad when I get cold - I seize up, so keep warm! Falling off a horse is not good either, the sudden jolt of hitting the deck really hurts for a few days and I seize up, but think most people would hurt anyway. I found that when I stopped riding, then went back to it, I was a bit achy, but riding is good for your core muscles, so helps strengthen your back (I am guessing it is in your spine, as most is?). You must keep fit, if you don't this is when you will seize up and become less flexible. My Dad is 70, and he thinks he now has it in his knees too, but he has it far worse than me - it seems to be worse in males, so lucky that I got it and not my brother. If you can, stay off the mediciation and keep fit instead - my father now has kidney issues from being on medication for years. It's not all doom and gloom, I forget that I have it most of the time, until I do something stupid :rolleyes:.
Pm me if you want to discuss. x :)
 
Ì have as too. All my doctors, physio and the pain clinic all said to ride as much as possible as it does help. My lad has been off the past week with laminitis, and I have not ridded, boy does my bacl know about it. I am on Tramadol and Naproxin which help a little and use a Tens machine which sometimes help. I have had both knees totally replaced last year and two operations on both ankles with meatl work! They have recommended I have the cortisaone injection but not too sure about this. anyway just to reassure you, you are NOT alone and I love my riding, even if it is just hacking. By the way I am only 55 years old!
 
candida said:
Ì have as too. All my doctors, physio and the pain clinic all said to ride as much as possible as it does help. My lad has been off the past week with laminitis, and I have not ridded, boy does my bacl know about it. I am on Tramadol and Naproxin which help a little and use a Tens machine which sometimes help.
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Yes, I take Napoxin too when I am bad. I agree, when I stop doing my usual mucking out, riding etc, I feel WORSE! When we had a gap between losing our old mare and then getting a new one - about 6 months, I was in loads of pain for weeks, as I was not doing much at all. Now we have a horse again, and I feel fit as a fiddle (or as close as I possibly can with AS!).
 
Him indoors has it, for years he had back pain & AS was never considered but one of his friends had heard of it & diagnosed him :rolleyes: He had the test, his GP thought it was a waste of time but it turned out to be positive. As has been said, he has to stay active - he does a hard physical job but in addition he does yoga, weights, jogging, cycling & he also has a routine of special anti-AS exercises that he does if it begins to cause him problems. He doesn't ride through choice but I can't see it affecting him if he did :)
 
Thank you Thank You Thank You :D

You lovely lot have cheered me up no end! Sounds really positive :)

A least I can see that it isn't the end of a horsey life!

I am picking up some Tramadol (sp) later today from my docs so hopefully this horrid pain will soon be gone.

I feel so much more positive now! :) I think the pain I ahve been in recently coupled with worrying about how I am going to look after my horse has been really getting me down but threads like this where people are dealing with and getting on with normal life make such a difference to how you are feeling :)

Thanks again :)
 
my mum has it - she's 60 now and hasn't ridden regularly (through choice) for about 20 years. But she kept herself fit and lean, doing plenty of walking - or as much as she was able, plenty of core strength exercises.

She had surgery about 4 years ago now to stabilise the area - she's not 100% but I'd say about 90%. She has been able to ride our horses about a mile up the road this summer which she never could have done before the op. Before she would have been in a lot of pain in her lower leg and foot, now it just goes a bit numb after more than a mile or so.

I am supposed to be being tested for it as well, but am too scared to find out and keep putting it off. :(
 
Hi
I have it too in my spine. I was diagnosed aged 12 and was told I must never ride and take up swimming, not the riding that causes a problem but the falling off!!

I'm now 34, have worked with horses since I was 16 in racing, hunting and eventing yards. I have also spent 2 years running a riding school and a good 5 years buying, selling and schooling naughty horses. At my busiest I would be riding 6 horses a day. I also produced jumping ponies taking them BSJA (as it was then!) jumping up to 1.10 metre tracks.

I have found that standing for long periods and/or getting cold are a real killer. Sometimes riding can set it off and I give myself a couple of days off and it's fine. Other than that silly things can bring on an episode, like bending over washing the car. My flare ups are few and far between though and the fitter you are the better you will be.

I do occasionally see the consultant who when he last x-rayed my back told me there was significant deteriation and I need to consider surgery, but to me that is a last resort option and all the while I'm as well as I am there is no way!

Don't feel down, once you are over this flare up and you get to know what you can and can't do, then you can manage this condition. :)
 
foxy1 said:
Hi
I have it too in my spine. I was diagnosed aged 12 and was told I must never ride and take up swimming, not the riding that causes a problem but the falling off!!

I'm now 34, have worked with horses since I was 16 in racing, hunting and eventing yards. I have also spent 2 years running a riding school and a good 5 years buying, selling and schooling naughty horses. At my busiest I would be riding 6 horses a day. I also produced jumping ponies taking them BSJA (as it was then!) jumping up to 1.10 metre tracks.

I have found that standing for long periods and/or getting cold are a real killer. Sometimes riding can set it off and I give myself a couple of days off and it's fine. Other than that silly things can bring on an episode, like bending over washing the car. My flare ups are few and far between though and the fitter you are the better you will be.

I do occasionally see the consultant who when he last x-rayed my back told me there was significant deteriation and I need to consider surgery, but to me that is a last resort option and all the while I'm as well as I am there is no way!

Don't feel down, once you are over this flare up and you get to know what you can and can't do, then you can manage this condition. :)
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Wow, thats you too be diagnosed! I am 37! Well done though, sounds like you have never let it beat you!
It is so encouraging to hear all of these stories :)
 
Hi guys,

I was diagnosed with this this evening - it's quite a lot to take in.

Does anyone have experience of infliximab or adalimumbab therapy? My consultant wants to get me started on one or other of these ASAP
 
Hubby has this. He takes sulphazasaline (sp?). If he doesn't exercise it gets much worse, so he has to keep active - vital;). Controlled very well with the medication, but took a long time to get the medication right. If you get Iritis (eye problem) it's one of the accompaniments of the disease, but easily treatable with eye drops.
 
I have it too. Inherited from my mom who has had back problems since she was about 17 but wasn't diagnosed with AS until she was about 29 as it must have been my grandad who carried the gene but he died when mom was young so no-one knew he had back issues and never thought to test for it with her being female :rolleyes: I was diagnosed last year at 22, i'm almost 24 now, however have had back problems and sciatica since i was 17 and my mom & myself have had our suspicions since then. Unfortunatley, mom's has been in a continual flair up since she was diagnosed 18 years ago :( She currently has to inject herself with an anti-TNF drug once a week to try to keep the inflammation at bay and takes indometacin and several painkillers but she has lost much of the mobility in her back and neck now. Thankfully, it usually tends to be less severe in women than men (moms always been an exception to most rules!)

Mine doesn't stop me riding or doing anything else horse-related, and for as long as i have any say in it it never will! :D It's much worse when i've been sitting for long periods of time, during major weather changes (hot to cold or vice versa) and i'm horrendously stiff for 30-40 mins first thing in the morning but hopefully they will send you for either hydro or physiotherapy (hopefully both if your specialist is good) and they will give you exercises to do that will help to prevent and fusion of the spine for as long as possible. Some professionals will try to tell you riding is bad for it but both my rheumatology consultant and physio ride and have said riding won't do any harm as long as i'm careful and try not to hit the deck too often, and may actually help as it will improve your posture and core stability (core stability is very important as will help strengthen and stabilize the back) As others have said, there are ways around everything and i'm sure once you've had time to get your head around things and this flare up has died down you will find a way of living with it and managing accordingly.

One thing i will warn you of though, any eye problems you have, please see a doctor straight away and make sure they know you have AS, and dont let them be dismissive of it. My mom almost lost the sight in her left eye about 4 years ago, the dr she saw in the first instance said it was a regular eye infection and gave eye drops which were no where near strong enough. We ended up rushing her to a specialist eye unit when she lost the vision in the eye and she ended up having to have several injections into the eyeball and took weeks to regain sight properly, left much longer she would have lost it permanently. Eye problems should never be underestimated in someone who has AS. I don't want to scare you by saying that as it's quite rare but i do think people with AS should be made more aware of this my their doctors.

I really hope you're feeling better soon :)
 
Hi-please bear with me this is my first post even though I've been hovering around reading the forums for a while now!

I have AS and am 30 (31 next week) it got diagnosed officially 4 years ago after an unfortunate long struggle with pain and severe stiffness for over 10 yrs following two car accidents (both times hit from behind whilst sat stationary-bad luck eh?!) it's thought the whiplash and spine injuries triggered the AS which would have probably hit me later in life anyway.

Currently I'm on adalimumab (humira) injections fortnightly and take naproxen when I feel I need it and co-codamol 30/500 for daily stiffnesses just to loosen things up but to be honest if the humira is doing it's job and I'm not in any other way ill then I can go weeks withough painkillers. It is a wonder drug and I urge anyone who has AS to push thier rheumatologists to get you on it ( you need to be specially approved by the NICE authority to get o. It but a good rheumatologist and the organisation NASS will help-thing is it costs your local Healy authority around £10-15,000 a yr for one patient to be on it so sometimes dependig on your area they may struggle to justify costs..but organisations like NASS are working on it)

I spent my time before diagnosis feeling like a 100yr old woman trapped in a young body...like the OP I could barrel walkto the field and back to turn my horse out and some mornings it could take me up to an hour just to get enough strengh to roll (yes roll) out of bed and haul myself upright by pulling on furniture.

Because of other health issues the rheumatologist at the time just felt I had rheumatoid arthritis and treated me for that but daily I was getting worse.


I would literally crawl to the car to get to the yard,somehow lift my 17hh ex-pointers saddle and bridle on then climb aboard..but always always come back from the ride feeling so much better. Just the gentle action of being aboard something that is physically moving every pArt of my body was perfect exercise...swimming did nothin for me and actually made me worse!

Throughout all this horrid painful and stiff time I still kept my own horse,I still worked on yards, I still hunted,competed, schooled youngsters, mucked out loads of friends horses because I knew that whatever was wrong that this type of exercise was actually helping me...even though all the health advisors were telling me not to!

I also throughout this time got put on every type of drug possible for AS and arthritis...ibuprofen,diclofenac,sulphasalosine(horrid horrid stuff) methotrexate ( even worse as is a chemo drug that kills your immune system) steroid injections and pills,codeine,tramadol, amityptiline (for pain even though it's and anti-depressant) pethidine (at my lowest point) naproxen....

So if you want any experience of these drugs!!!

I finally got diagnosed through seeing another rheumatologist -by this point I'd already had major surgery on my knee and was seeing an osteopath twice weekly for non-manipulative work)...an xray showed that where my neck had been damaged in the crash from whiplash,the AS had attacked it so much it was now fused solid bar the top and bottom vertebrae (you have 7 vertebrae in the neck). I also have a fused sternum (which is rotated from the seatblet force) and various AS spots down the rest of my spine.

If you don't get on top of AS it can fuse your joints as it's your immune system gone haywire attacking specific cells in your joints. That causes all the pain, stiffness and swelling (often not visable apart from inflammatory markers In Your blood) once they stop attacking a healing process takes over laying down bone cells which if allowed to continue,fuse the joint.

In places like a shoulder or hip that get fused, you can have that replaced..but in the case of my neck..it's too dangerous to reverse the fuse so I permanently look stiff and have extremely limited mobility.

HOWEVER I am lucky as my neck is fused upright..most of the time if heneck gets fused it gets fused downwards so I could have been left permanent looking to the floor...my saving grace for this my docs say is because I kept riding and I didn't stop moving.

Riding,keeping that strong core stability has stabilised my spine and meant that to look at me you wouldn't know what the X-rays horrifyingly show...and that is thanks to staying riding and mobile. As long as your core is strong then it can support the rest of you.

Since being on the humira (adalimumab/anti-tnf) I have felt like I used to be before all this started..I no longer wake to pain or struggle to lift my head off the pillow or even just hold a glass of water...I bounce out of bed full of energy and yes sometimes the AS does restrict me and sometimes I over do it and am stiff for a while but the painkillers now help that rather than me having to relie on painkillers just to be able to move.

I would say make sure you have very good rheumatologist who is on the ball with the latest in these anti-tnf injections...while painkillers and anti-inflamma help,they don't s e the problem that it is the immune system that needs sorting and they simply just supress that. The injections I'm on actually have human DNA in that bind to the exact cells that cause the problems and stop them multiplying...so I'm therefore immunosupressed..I have to be careful about picking up infections but it is a very small price to pay to be able to jump out of bed in the mornings!

Be carful of your health and get a flu jab and stay away from sick people even if you're not on anti-tnf as because AS is your immune system, any infection means you'll get an overload of white cells trying to combat your illness which will go straight to your joints...bet you know the feeling when you have a cold but your joints seem more achy??

Also look online about the research into a starch-free diet for AS...I did this for a year after diagnosis and before I got the injections and for me it really did help..(there's supposedly a link between how your body facts the the bacteria in starch and the cells your immune system attacks) there's a brilliant book with recipes in it whichh I forget the name of but PM me your details and will pop it in the post . The diet honestly made me a lot free-er within myself and less pain.

Also get I touch with NASS they are brilliant and so so friendly and helpful,drop them an email and they will get in touch with loads of helpful advice and put you in touch with people who can help you...I can put you in touch if you like...I've met the organiser who is a wonderful woman who does so much for AS sufferers

And if you just want to chat with someone who's been through it..any of you I'm more than happy to chat!

I'm currently having other health issues for which I've been off work for 6months now but my AS has been brilliant thoughout because I've been doing the right things to make sure the symptoms don't worsen.

Sorry all for the longest post in the world, I just hope some of what I've said can help!

Lots of hugs!
Xx
 
Balibee said:
I am currently being tested for this disease. It is worrying me long term how this could affect me and my ability to ride, look after my horse etc.

At the moment I am in quite severe pain and can't even walk to the field and back on my own let alone lead my horse. The doc said hopefully once I have had couple of weeks on anti inflammatory drugs and pain killers that it should settle.


Does anyone on here suffer from this or similar and how do you cope?

Thanks

:)
Click to expand...

Dont despair; keeping fit and active and finding the key exercises for this condition are important, swimming, riding etc. Take advice from specialist i.e. look at the relevant associations for AS see what they suggest. Dont overlook back up from complimentary therapies too like Alexander Technique, Acupuncture or Bowen Technique. They wont cure it, but they do bring relief and help keep the body synchronised-Bowen is used for horse too of course!!
Easy to say I know, but keep as positive as you can. Reading some other's posts, there's lots that can be done as well as taking the prescribed mediation.
 
Cam23 said:
So sorry for all the mistakes in that! Am using my iPhone who thinks it's cleverer than me for spelling and grammar!

Xx
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Great to hear your story Cam23 and glad the new generation tnf-a blockers are doing the job. xx
 
Great post cam23, thanks :)

I am now pain free again! :) I still haven't ridden (end dec) but I am doing all my own jobs at the yard and I am careful what I lift. Started clipping my lad last night and once the pain started as I was bending and doing his belly my friend took over.

I haven't had to take pain killers for a few weeks now so looks like my flare up is over!

It is very positive what others are saying so as long as I look after myself and am careful I should be fine :)
 
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