As above I was diagnosed about 8 months ago.Apparantly it's attacking all my lower joint's hip's,knees,ankles and affecting my left shoulder.The doc has told me it has speeded up the onset of arthritis in my feet and knee's.I have been coping quite well and was back up to doing a 3hr sunday off road ride & doing 3 day's a week of about 15 miles on the road but about 10 weeks ago I had a nasty attack of it and rode for about 30 mins yesterday for the first time in 10 weeks.
I have lost 2 stone in weight in that time,due to lack of appetite and just being in to much pain to eat some days.
I'm on 16 tablets a day for pain and anti inflammatry.
Does any body else on hear suffer? And how do you cope?
My father in law has it and he doesn't cope. It an awful disease and I really wish I could say something more positive other than hang in there and don't let it beat you.
I can't offer you any professional advice. But from my experience of my father in law I would say stay as active as the situation will allow. The more you let it take over your life the more the emotional experience of the disease will come to dominate you.
Keep riding stay positive and ask for help when you need it.
I have it. Just moved into my hands which is quite depressing...(eventually) diagnosed about 4 years ago
Now on disease modifiers rather than just anti inflams. Had it bad in the chest wall which made sneezing most unfunny. Acupuncture helped with that area - try it. There is a new treatment which has shown good results but its expensive so the quacks try and avoid prescribing it. Can't remember the name but it involves fortnightly injections at home or quarterly in hospital. Talk to your rheumatologist - assuming you have one assigned.
email in profile if you have any specific questions.
I've had AS for about 17 years (Sacroiliatic area, spine & chest)
I take painkillers (Tramodol HCL SR) & anti inflammatories (Aceclofenac) twice daily, 4 tablets in all
Physio does help, as does keeping active, if I stay sat for too long or have a massive lie in I pay for it with more stiffness & general aches
I have good days & bad days, the good certainly outweigh the odd bad day.
I still ride as hard & fast as I dare pretty much without a thought to AS
[b]Santac[/b] what meds are you on?
I was diagnosed about five months ago. I'd had increasing pain and stiffness in my neck and lower back, but it was a really bad eye inflammation that alerted my G.P. I was prescribed Arcoxia (I needed a letter from a Rhuematologist for this as apparently it's costly), which seemed to work pretty well in reducing the symptoms, but is not available over here in Canada (I emigrated three months ago). Currently on Celebrix, which is not as effective. Apparently certain types of Yoga can help alot, I've been really busy since arriving here and have yet to start a class, but I can do alot of stretching at work and it's kept me mobile.
The severity of my condition seems mild to what you describe, but according to the expensive Rheumatologist I saw at Wimpole street, London, it can improve or clear up of it's own accord.
Orangista
here's the list:
Methotrexate 25mg once a week
Folic acid once a week (2 days after Methotrexate)
Diclofenac 3 times a day
Lansoprazole once a day
Sulfasalazine 2 twice daily
Tramacet 2 tablets 4 times a day
And with all that lot I'm still in pain everyday mainly in the soles of my feet and my knees so walking and stairs are not a lot of fun.
The Rheumatologist is pretty sure I need to be on anti-TNF which I think is the one youe inject yourself with but we have to wait another three months to be seen to have tried this course of action!
Hi Santac,
I have had as for 4 years and it took them 2 years to find out what it was. I Get it in my hips, soles of my feet and lower back but i found having the pain in my feet was the worst as every step you take hurts although mine does not seem as bad as yours I only take Sulfasalazine and Diclofenac as i responded well to them not had an attack in a while, what I did find helped a lot (although it hurts a lot to have) was Cortisone injections in my heels would make the pain more bareable for a couple of months.
hold on in there as when they find something that works for you life soon gets better although when I was in pain everyday for 2 years I thought throwing my self in front of a bus would be the best kind of pain relief.
My brother in law had to get both hips replaced in his 30's due to this. Hope it doesn't come to that for you.
Make sure you get your eyes tested regularly because Uveitis / Iritis are associated with AS, potentially they can be serious if not treated early. On the upside can be treated relatively easily with Steroids.
Thanks for the replies people swarren27 it's nice for me to hear of someone else having the feet problem,as you feel nobody really can understand the soles of your feet being painful everystep.Did it ease up at all if you stayed off you feet for a while ?ie easier in the morning?
Iwas going to reply last night but had a really bad day and once I had got the kid's upstairs and me going up on my arse I wasn't struggling back down to go on the pc so was watching tv in bed by 2030
santac, sorry to hear about it.
My Dad has had it for over 20 years now, he has it in his knees, hips, spine and neck, and is now being lined up for a hip transplant.
He's on so many tablets he might has well have his own pharmacy.
I have noticed that as long as he keeps active, he's better.
Just by reading, and listening to other sufferers I would try and find an exercise that is good for you. Some have said that some Yoga, MTB etc all helps, my father finds that any water based activity (not swimming, more like gentle aqua aerobics) helps a lot.
He has bad days, if you ever do so go, easy on the rest of the family, they won't understand the pain you are in.
Just keep moving, and do the best that you can.
Anybody else ?
Just picking up from before - one of my problem areas was the left ankle (turns out I had broken it years ago without knowing so that obviously didn't hep). Some manipulation from a good physio and it has improved beyond belief - she just focussed on getting some movement in a particular joint. She is/was NHS - just luck of the draw as the previous one I had used was hopeless. I would repeat the acupuncture suggestions as well. I see the physio every 6-8 weeks and concentrate on the problems areas - she does both the acupuncture and physio.
I was a sceptic before, especially when she started talking ying and yang!
cb if your prepared to listen to a bit of yin and yang i would get yourself a good book on the macrobiotic diet. anything by michio kushi would be a good bet.
Santec,
yes it is Painful all you want to do is not walk on them and cant wait until you can sit down or laydown, the best feeling I used to have was when I knew I was going to be able to laydown for the rest of the day, best part of the day was going to bed and the worst was waking up And knowing I was going to have too go to work and spend the next 10 hours on them. Talking with My Rheumatologist and she thought that it was from were my hips were hurting it was making me walk funny, I was given Crutches to help keep the weight of them and the injections help a lot although they do hurt to have proberbly the worst pain i have felt as your heels have the hardest skin on your body. on a better note once they found the right medication for me I have been fine for the last year if only some aching in the mornings which quickly go. Swimming helps a lot as their is no pressure on your feet.
Hope this helps