AS - in agony and getting worse :'(

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Hi there,

I am 22 years old and was diagnosed with anklosing spondilitis in July this year. I was having back pain for 11years before I was diagnosed! I have been put on diclofenac for it but it doesn't seem to be doing anything. One of my hips has been causing me quite a lot of pain for some time now but it now feels like I am in agony everytime I move or walk - I can't get a good night sleep and always feel tired. And now I have started getting pain in my knee, first it was a shooting pain every now and again but now it is quite regular and its really hurting when I walk. Just a bit worried because when I saw my rheumotologist in July he said it was good I wasn't having any problems in my other joints (e.g.hip and knee) (my back is always in constant pain but I am used to that now!) I am only 22 and I feel like I have the body of an 80 year old and think my family and friends think I exaggerate all the pain I am in because the majority of the time I can put a brave face on it but I am never comfortable and I am just getting really down about it! :'(

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14 Replies

  • Posted

    So sorry to hear your problems. I do not have AS but I do have rheumatoid arthrits, since I was 3 years old, so I do understand something of what you are going through.I noticed no one had answered your post and that's a lonely thing.

    I really undertand how you feel, especialy the 80 year old bit and family and friends not really understanding it all.

    There may be a local AS group you could join or even a website forum you could join so you can talk to other people like yourself. Have a look and be brave.

    At your age I thought my life was hell and I'd never get through it all. I then found a lovely man who didn't mind my problems, had two children and am now a granny. There is life with nasty conditions, You will in time get more used to it all and so will your friends and family.

    You just have to try and keep as positive as possible and do what you can and learn to accept your limitations, when they happen.

    I can't take your pain away but I can offer you hope, be kind to yourself and you will get through all this.

    Take care of yourself, FannyJane.

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  • Posted

    you tell a similar story to my self, i understand every thing you say. i feel the same about people not understanding, so now i just say im ok when people as me. rather then tell them how i really am. just feel like i have no

    one to talk to about it. i would like to see if there is people with AS that live near me so we can talk.

    you just have to try your best to stay strong i know its very hard but its all you can do

    all the best peter

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  • Posted

    Not good love, but at 22 years of age absolutely terrible. I have scoliosis and have suffered for the past 12 years with neck problems, dizziness, balance problems. This has also affected my walking.

    I paid for an operation on my neck as Xrays and an MRI Scan showed disc protrusions at C5/6 and 6/7. Post op. I now find that my cervical spine is 'giving'. I am worse, at this point, than before the operation. Like you, I do not know where to turn next. The pain is debilitating and no-one understands except my husband.

    Take care of yourself.

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  • Posted

    Thank you all so much! It's just a relieve knowing im not alone sad

    Got the docs tomorrow to tell them about me knees, really starting to give me a lot of grief!!

    I know there must be people worse off then me but I can't help feeling sorry for myself sometimes!! lol

    Thanks again everyone xx

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  • Posted

    Hi Pandoras_Box, Just saying I'll be in your pocket tomorrow morning and thinking of you.

    As to there being probably lots of people worse off than you, yep there may be, but each one of us has to deal with our own pain and problems. It doesn't matter what we are labelled or what scale our pain is on, to each and every one of us it's what we are experiencing that matters.

    It's absolutey ok to feel down sometimes and have a 'why me' moment. As the years go by these get less but they are still there believe me, especially when you add what we haven't been able to achieve/do compared to 'normal people'.

    So please don't beat yourself up about any of your feelings.

    Hi Mojo, so very sorry to read of your experience. I have had 7 surgeries and have been offered a cervical spinal one. So far I haven't taken it up as I've read so many negative reports. I'm so very pleased you have a supportive husband. I also have a wonderful Mr Fanny Jane, without him I don't think I could be as strong as I am.

    Hi Peter, I do hope you can find a group to join and talk to. I'm sure there is probably one on the Net you could try. I recently joined Arthritis Care Forum. I never thought I would join anything but have found the topics and people interesting and caring.

    I also look in on Pain Support Discussion Forum and Spine Health sometimes, but not as a member. They remind me that I am not alone with my particular flavour of arthritis.

    My best to you all, keep warm and take care of yourselves, Fanny Jane.

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  • Posted

    I would check out kickas.org site. It has loads of information on there about AS. Apparently a low starch diet is very beneficial for people with AS. It was devised by Professor Alan Ebringer.
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  • Posted

    Thanks a lot everyone, you have all been very helpful. I have been put an indometacin 50mg twice a day instead of the diclofenic - she said this is more heavy duty. Does anyone know anything about this? She is also trying to bump up my app with my rhemotologist to find out whats going on with my knees etc. Thanks again x
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  • Posted

    Hi i have finaly been told what is wrong with me i have had symptoms for over 6 years and i have been passed from place to place telling me that tests were coming back as :normal:whatever that means i have been made to feel that it was all in my mind and that the pain i was having was all in my head or my age i am 54 and dont concider myself as old i was sent to see a physio and he was the only one who sat and listened to me he looked at my records from when i saw him years ago and told me that i have AS i get so down and depressed when the pain is bad i find it difficult to stand up never mind walk but i am determend to try to be as active as i can as i dont want to let this thing get the better of me does anyone know of treatments that may have helped them we just have to remember we are not alone in this warmest regards to you all
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  • Posted

    Hi everyone,

    I was diagnosed with AS when I was around 22 having had the symptoms since I was about 16. I’m now in my late fifties so you could say I’m an old hand at coping with the disease.

    The first thing that I would say to anyone recently diagnosed is that it is a disease that you’ve got to take on head first; don’t sit back and let it take over your life. I still work at my trade as a mechanical fitter which involves some quite heavy engineering work. I remember being told that I possibly could be wheelchair bound by the time that I reached fifty. Ok, medical science has moved on but it’s up to each individual how they deal with their problems.

    There are many symptoms that are associated with AS. It sometimes reminds me of one of the gadgets you see on the shopping channels; that is not only do you get the back pain but you also get lots of wonderful extra things free! Probably the most difficult thing to cope with is the psychological effects. If you can defeat that side then you’re well on the way to getting the best out of life despite your medical problems.

    It’s not you that’s done anything wrong; you’ve just been unfortunate to find yourself carrying around this unwanted passenger in your life. Feeling sorry for yourself just doesn’t work or do any good, being positive about life is the way deal with this. I live quite near a hospice which serves as a reminder that there are, indeed, people worse off than you. That, for me, was the first positive thought helped me on my way. We can do things to make things better.

    I am very fortunate to be surrounded by a loving and caring family who have pushed me on through the bad times. I wasn’t allowed to sit back and let it get worse. If I was feeling sore or upset they encouraged me to get up and move around. Nine times out of ten that’ll relieve the stiffness. My wife found that a AS support group was based at the physiotherapy department of my local hospital which gave me access to not only practical help but to be around others with the same illness. I found that I was not alone in having quite an irreverent sense of humour about the disease possibly due to my shipyard background. Some of the hunched-back comments couldn’t be repeated here! Remember were not making fun of each other but this horrible disease we’ve been burdened with. It may sound harsh or unfeeling, but it’s an important tool in accepting our lot.

    As I said, there is a lot of help available. Insist on an appointment with the rheumatology specialist who will help with many aspects of your disease. Different medications from TENS machines to NSAIDs (anti-inflammatory drugs) or even Anti-TNF treatment, an expensive biological treatment which deals with root cause of the flare-ups. Physiotherapy is vital in combating our problems; there may possibly be a physiotherapist working at the clinics.

    Other joint pain is sometimes caused by our poor posture. I had a hip replacement about 15 years ago which put an end to the most painful spell of my life but it was dealt with and it doesn’t give me much bother now. I would certainly advise that you get as much treatment as soon as you can. Don’t put up with the pain; deal with it before it gets worse.

    It’s a difficult disease to live with but it gets easier as you go on. In most folk the AS will “burn itself out” eventually. Things will get better.

    Good luck everyone and stay positive.

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  • Posted

    im 18 and have had as for a few years but was only diagnosed around 2 years ago, i am struggling with the pain and have been offered Humira (adalimumab) injections, i took it once, then the second time i pulled away and now i am struggling to take it, i am unsure what to do sad
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  • Posted

    Hello. I am 21 year old male and next month 22. I understand your frustration. I have been diagnosed with AS and I had arthritis as a small kid.

    I alsp run my own successful business called FitLife. We specialise in Personal Training, Bootcamp and Sports massage.

    My AS comes and goes. But you cant let it stop you. As soon as you stop.... it gets worse. Keep moving. If I was not a Personal Trainer I would be almost cripple. Its due to fairly heavy weight training and fitness I can keep moving. Soon im running 21miles up and down a mounting and loads more events with my company.

    I recommend you squat. Work your way up to heavy weights, but squatting helps me and Deadlifts in the gym. Stay positive.

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  • Posted

    Hi Charlotte,

    I think anyone who self-injects knows exactly what you’re going through. There must be some sort of self protection thing we all have built-in that makes it difficult to knowingly inflict even the smallest amount of pain to ourselves.

    Obviously, the first thing I would advise is to try to force yourself into taking the injection. Take it from me, although I’m the world’s biggest coward, I wish that I had the option of these anti-TNF drugs all those years back when I was diagnosed; they really are wonder drugs. It really isn’t all that painful and you soon get used to it. It’s just the difficult matter of getting over that initial hurdle. Have you asked a friend, relative or maybe the practice nurse at your doctor’s surgery to help with the first few injections?

    If it is a hypodermic injection you’re using there is the much easier pen device. It’s a bit more expensive for the NHS though.

    Speak to the rheumatology nurse; I’m sure they will help. There are other option available although once more, costs may be restrictive.

    Anky Spond is one disease that the key to getting the better of is taking it on and not giving in. I feel that I am fortunate in that I was one of the earliest generations of sufferers who was given physio and told that mobility was the key. A diagnosis of AS used to be a life sentence of serious disability. Things like corsets were prescribed to try to “train” the spine into growing straight. It is a disease that we have to fights against and it most definitely can be very demanding but, as Samgw101 describes, we can go on to live fairly normal lives. You’re not alone in dealing with it. The support of family, friends workmates and the health professionals are just as important as any drugs we are given; but is a battle we can all win.

    Think of the difference the Humira will make to your future as there’s now no need to suffer in the way us old codgers had to. I’m sure that you can be strong and get used to the injections in time.

    I’m due an injection this week, I’ll be thinking about you.

    Good luck and stay strong.

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  • Posted

    E_f

    Thankyou for your response, it helps speaking to people with the same condition as I don't know anyone with anything similar.

    I was supposed to be my injection yesterday, I have the epi-pen one and I couldn't take it, I'm going to go to the nurse and see if they can help me. I have tried lots of tablets over the past two years and they havnt work, so I am really disappointed and annoyed at myself that I couldn't take it.

    I have joined a gym and are going around twice a week and just doing a little a time, I really hope the nurses can help me as I know the effects the injections can have.

    Good luck taking your injection!!

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  • Posted

    When people see me in obvious pain and ask what is wrong If I say Ankylosing Spondilitis invariably the answer comes back " oh Iv'e got that" .It is very annoying so if people ask me how I am I just say o.k thanks, it is easier than trying to explain that it is not just Spondilitis. I was diagnosed very late, 56 years old although I had been getting problems for a few years. My Doc initially told me I was to old to get it and treated me for stress despite the fact I explained that it ran in my family. After 5 months he decided to get me x rayed and that proved I had AS.

    At one point when it was bad he put me on a short course of steroids that worked very well. Shortly after that I moved to Spain and enjoyed the benefits of a warmer ,healthier climate. For 3 years all I took was Cel-ebrex and had only mild to medium pain. Then I fell off a chair ( sober, honest) and that seemed to kick things off again big time.My Doctor tried me on various pills all of which worked to a degree but all of which had side effects.

    I asked my Doctor if I could go on to steroids again but he felt they softened the bones and put me on to Feliben patches which I believe are morphine. These seem to work well for me and the only side effect so far is a bit of stomach upset which is easily controlled.

    I would be interested to hear other peoples experience of Steroids as I had no side effects from them.

    Incidentally I am still quite upright although my spine goes off at about a 35 degree angle about 6

    vertebrae from the bottom.Obviously I avoid lifting and bending as much as possible as advised by my Doc but I still do a bit of dancing with no serious pain.

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