[Closed] Ankylosing spondylitis.....

I'm afraid that I know nothing about ankylosing spondylitis, but after having a family member being told that she had weak muscles and being given an exercise routine by a trained NHS phsyio (after being told the same and referred by a GP). and then finding out later that what the problem actually was, was severe bone growth within the spine severely compressing the spinal column (which presumably the exercise could have worstened) I'd be concerned about trusting your back to a fitness instructor quickly swotting up on his training manuals or, for that matter, an internet forum however well intentioned the advice.

I think it always make good sense to chat to your GP or consultant before starting an exercise regime, especially if there are underlying medical concerns, and making sure that you get it right, from the off! I'm sure that there are great exercises out there that will help you out, I hope so anyway, but do get some professional input if you can.

Hearing the experiences of others can be a great help and encouragement too, but again, your back/situation may be different to there so my guess would be that things need to be personally tailored to you. I hope it goes well.

cheers , appreciate the comment 🙂

unfortunately my GP is painfully rubbish (once pretended to take my blood pressure through a coat, jumper and long sleeve t-shirt.. just writing down whatever came into his head).

the main advice is to keep active and work on my core, when building up muscles to make sure that its done with the correct technique instead of just running at free-weights like an excited chav.

yoga and pilates come highly recommended but unfortunately there's no pilates classes in my area that run outside of work hours, and the yogalates class has just ended at the gym i've joined lol.

Friend of mine has had it for years, he's 65 and he does 3, 40 mile road rides a week. I think if he stops the exercise he is more likely to suffer.

He used to swim every morning but has now moved over to cycling. We did allot of the major climbs around the Tourmalet this year, I'm sure you will get your exercise regime sorted, as PJay says your GP or Physio is the first place to consult.

Will see if I can put you in touch with my mate via email

Read this and see if you get anything from it.

http://www.astretch.co.uk/important_questions.htm

Phil if you get an email, his name is Tony

I'm in the Macc area and the local hospital has a rheumatolgy (sp) physio section. They know what they're doing re AS and exercise. Local swim therapy (physical not mental!) sessions and gym sessions tailored to AS bods etc.

I also find that acupuncture has helped me in certain joints, particularly chest wall.

[url= http://www.nass.co.uk I have AS but it effects all my lower joints (hips,knees,ankles,feet)badly, luckily no real spinal probs yet.Like cb said my local hospital (Amersham)has specific classes for people with AS with a physio, she shows you what is best for you then you can concentrate on them. Have you checked out the nass site above?
they have useful info on there .

My dad has AS.

Swimming helps him, as does golf.

Another vote for talking to NASS - they're very good.

I was diagnosed with this in June. I have the HLAB27 gene that lay dormant until triggered by appendicitis. I was literally flat on my back for two months in absolute agony, perhaps one of the low points in my life as I never knew what was wrong with me and no doctor could find the cause and I wondered if I would ever recover. I was referred to a Rhumatologist where tests wer run and a diagnosis given. I was referred to a good physio at Blackheath hospital where I was given exercises to strengthen and flex my core; the worst joints I suffer with are neck/shoulders/back. Acroxis was given to help with the inflammation which has been a godsend. I was lucky to be back exercising within 4 months of diagnosis, others can struggle for years before they feel well enough (according to those I spoke with). The biggest help I found was a foam roller, this has helped me stretch my back/neck/shoulders and made me realise the importance of stretching and flexibilty and the effect on the body. There are videos on YouTube etc. I was also advised to do certain gentle exercises from Pilates / Yoga. There is loads on the internet, most of which points towards keeping mobile, stretching and good posture. More than welcome to mail me if you need to go through anything else.

Also forgot to mention (as others have) the information on the NASS website, very good indeed.

Cheers for all the replies guys/gals...

hlab27 here too 🙁 at the moment I'm suffering from constant back/neck and shoulder pain, occasional stiffness of the chest but mainly its all in my back.

The NASS website is something I've come across before but in a stereotypical man fashion I've done everything I can to avoid admitting to myself I need to look after myself! now I've got the motivation to so what I can to help myself before it gets too bad. When I've got time tonight I'm going to hopefully learn the website inside out 🙂

The foam roller stretching is a good one, +10 in cool points for the gym guy last night as it was the first thing we started working on.

Swimming is something I want to get into.. but for my sins I've got issues with my body and point blank refuse to take my top off in public so swimming and learning to swim properly is something I've not been able to do before. Hopefully the gym and change of diet will help me loose a little weight (in the past this has helped me to be able to take my top off on holiday) and now that I've cut my dreads off I'll be able to try swimming again. without using the chlorine in dreads and taking days to dry properly excuse.

As mentioned above it seems to be all about keeping mobile, the days where I'm stuck at a comp all day are the worst and by the time I get home I'm in a lot of pain and motivation to go exercise suffers, but now I've admitted I need to act now before it gets too late... fingers crossed this will be different.

I've watched my mum (also hlab27) go through a lot, nearly blinded by iritis (sp?) several times, near constant steroid tablets or injections, several collapsed/prolapsed/falling apart discs in her spine... the list goes on and on. it should have been enough to make me start some preventative exercise earlier... I know I'm an idiot for not doing so.

Thanks again for the replies, its good to hear that there are 60yr olds out there who can still swim etc 🙂

(now the question is... do i use AS as an excuse to by a FS bike?)

jsut had a chance to take a look at the AStretch link SBZ... cheers buddy 🙂 will have a proper read tonight of that too!

I thought this would be completorious bullshitiitis until I just looked it up and was surprised that it's a real condition. Peculiar name though...

philconsequence I didn't need to use AS as an excuse to go full suss I just can't ride a hardtail anymore.
I've just started on Humarin and the difference in me is remarkable and my bloods are normal for the first time in 18 months.loddrik :nobody seems to have heard of it until they get it!
My Rhumatologist told me it effects 3 in every 1000 and many people carry the HLAB27 gene but it takes something to trigger it off.As far as I know there was no history in my family but it's been passed to me .

I'm a Gp who never takes blood pressure through clothes

As far as I am aware the more mobile and active you stay the better you will be in the long term

You have probably looked at this before

http://www.arthritisresearchuk.org/arthritis_information/arthritis_types__symptoms/ankylosing_spondylitis.aspx

If any doubt or need further advice then get referred to a specialist physio via your rheumatologist

<simpsons voice>Hi Dr Nick!</simpsons voice>

cheers buddy 🙂

turns on simpsons voice. Hello Everybody I'm dr Nick!!

heres some more info for you with a couple of weblinks at the end. hopes it helps!

http://www.patient.co.uk/health/Ankylosing-Spondylitis.htm

(Mr MC posting)

loddrik-

ankyl.. meaning bent or crooked
spondyl.. meaning of the spine
itis.. meaning inflammation

I think (neither a medic nor latin speaking) but I spent 18 months thinking I had it, on vioxx anti inflammatory (prescription ended just as they recalled it 🙄 and salazopyrine which meant regular blood tests to make sure my liver still worked. 😯

Turned out I didnt have the genetic marker and the problem eventually all but vanished (still have a slightly swollen/sensitive sacroiliac joint) but did a lot of reading and regular activity and stretching seemed to be the key.

And to the OP, whatever it was I had I bought a FS bike as I couldnt take the jarring in my sacro joint, so treat yourself as part of the positive motivation to fight the disease and its symptoms. Good to hear you have found a decent gym trainer and good luck.

hey mr MC 🙂 stop tempting me into new bikey goodness.... only bought my first hardtail/bike a few months ago!

glad you're doing better and the stretching etc helped 🙂

PhilC ... Mr MC isn't trying to tempt you into new bike naughtniness but he genuinely couldn't ride his nice pimped out Ti hard tail and he sold it begrudingly as he loved that bike. But if it makes MTBing moer comfortable and helps the joints (rather than jarring them) then surely it's worth it? Good luch though.

unfortunately my GP is painfully rubbish (once pretended to take my blood pressure through a coat, jumper and long sleeve t-shirt.. just writing down whatever came into his head).

Change your GP. A family member has a serious condition and the treatment they received (and their overall well-being) increased dramatically after changing GP. Time and effort well spent.

yeah, moneys a bit of an issue but its a definite on the shopping list for next year! dont want to invest in a low quality FS that i need to keep updating/replacing bits on if it would work out better to wait longer and spend more money on something that will last with only the basic chain/cassette type replacements.

i have changed the saddle on my hardtail for a much more forgiving one so i'm looking forward to my next ride 🙂 i'm trying to keep in mind that any exercise is better than sitting at home wishing my back didnt hurt.

gym update:

went for a second induction last night and noticed that the guy working with me is the only one to have a few certificates in injury recovery type stuff... cant remember the exact names off the top of my head, but he had a list of qualifications 2 times as long as the other trainers 🙂

he spent a long time going through stretches and core exercises with me, he had obviously spent time speaking to colleagues and researching AS which was good to see as everything on the work out plan he had created was spot on from what i can tell by checking back on the NASS website etc 🙂

feeling positive!

first gym session tonight:

Warm up (cross trainer (no handed to improve balance) so no impact)

stretches

floor/core work (Swiss ball type stuff)

more stretching

little bit of resistance work for my shoulders and arms (not enough strength in my arms and right shoulder at the moment to hold myself on the stretches) the resistance stuff has been modified to include an element of balance and working the core muscles at the same time, nice little touch 🙂

more stretches

then another bit of time on the cross trainer to warm down

i'f i dont post tomorrow it's because i've gone all floppy from the stretching and died. wish me luck haha

EDIT - jsut seen your post about changing GP... i only ever really go to the GP to tell him i've got tonsilitis and what antibiotics i need so its not the biggest issue at the moment.. when he's told what to do he does get on with it... for back stuff i will start requesting a different doctor though!

Wow I may have actually leant something here, my Mrs has had a bad back since having her appendix out last year. Despite lots of tests still no reason. we put it down some how to the surgery. will have to look into this more. Thanks .

We manage her pain with the bradford bulls sports physio at the moment and it seems to be working well

firestarter if possible ask for a blood test for the HLAB27 gene (though it is rather expensive I believe). This may give a little more insight towards AS being the cause of back pain. I also had a bout of reactive arthritis in my right leg a couple of weeks after my appendicitis, before getting full blown AS after that so this may also be worth looking at?

Firestarter be careful not to scare your missus as it can be extremely daunting to start with. It is more prevalent in men between the ages of 25-40 though. Good luck and hope your GP is useful and agrees to testing. Mr MC's GP at the time was brilliant (well eventually after he saw a few). Got to the point where one day she needed him to come in for an urgent blood test and he wasnt' answering his phone, she knew he was police, so rang the switch board to get a message through and then drove to our home address at the time and knocked on the door herself! Won't have many GP's who will do that, shame she moved away after that.

Many thanks for the advice and mc that really is service 😉

I have been going through lots of similar tests recently but it seems I may have some kind of reactive arthralgia. (not fully blown reactive arthritis).

I have been tested for everything, bloods a thousand times, urine, stool, x-ray and MRI. Still none the wiser for what caused it so taking random antibiotics, plenty of anti inflamatories and also Amitriptyline at night.

The amitriptyline really works on the pain side of things for me. I hate covering pain as you dont know what damage is being caused but once you know the problem it can help with sleep, concentration etc... .

I am not sure if the AS swelling can be controlled by diet but I have a great book called Conquering Arthritis by Barbara Someone(cant remember the second name) and it is amazing the way the body can reactive to the changes in diet for reactive and rheumatoid arthritis.

From my hasty web checks on AS when looking at causes it is the inflammation of the joints/tendons/muscles/cartlidge of the spine that then slow turns to bone creating 1 long spine.
The movement and exercise keeps the circulation in these areas and also means bone will not grow where the spine is moving. As far as I could make out you can do little to cause any extra damage at this stage but then again these diseases are different in everybody.

Good luck, fortunately it sounds like you are making up for lost time and will get on top of it. More reason to get out and enjoy yourself.

I would be pushing hard for regularly scans or xrays to see what is happening and if you are helping prevent the onset of it.

cheers for the input everyone 🙂

diet change already underway, party to do with body issues but mainly as i know deep down extra weight wasnt helping my back at all! fingers crossed although the gym stuff isnt exactly fat burning or calorie hungry, the extra bit of cardio on the cross trainer each week will help shift some excess fat along with the diet.

that reminds me, i should make a concerted effort to increase my protein intake..... more chicken! 😀

i ****ing love chicken.

if anyone's interested about my new change of diet (i wont assume you are and post it like i did the gym routine lol) then its a bit gentler than the iDave diet, but draws heavily from it and mixes in some key aspects of a diet a close friend has achieved great success with and kept the weight off afterwards 🙂 i'd be happy to post the key points as its really simple

Different bit of advice, but make sure you have regular eye tests. You'll be at a greater risk of developing Iritis/Uveitis with AS. As you can potentially lose you sight with Iritis it's important to keep a regular check on your eyes, even if your vision appears normal.

🙁 yeah mums nearly lost her sight several times with iritis... steriod drops and stuff but still gets it regularly and worse each time.

tesco value eye-check it is! considering how obvious it is i should've already thought of that and booked myself in i'm either really stupid or really really wanted to avoid accepting the issue up until now

Iritis can be tricky to treat, especially in persistant, chronic cases. The only real treatment is Steroid drops, occasionally a low level treatment can keep flare-ups at bay, but then the risk of side effects increase also, Glaucoma and Cataract.

yup! all sounds wayyy too familiar. on second thoughts i should upgrade my eye test from tesco value to specsavers

Or maybe a good local independant who can spend a bit more time on the test!!