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Have any tips?

Posted , 5 users are following.

Rayro89
Rayro89

I am 24. I found out I have ankylosing spondylitis 3 days ago. The back pain had been excruciating for about 2 years. I have 2 very young, very active children. I am curious what I have in store? I honestly don't know a whole lot about it, and every bit of research I try to find either directs me to something else, or just raises more questions. I'm new to this so what's to come? And I have been having these really painful earaches, that come with buzzing or fuzzy sounds, anyone else have that issue?

0 likes, 17 replies

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  • ropeburn
    ropeburn Rayro89

    Posted

    Hi there

    I will advise only a couple of things which you can choose to follow or not.  :-)  STARCH is thy enemy.  Avoid eating starch which is potatoes, pasta, flour, cereal, bread etc.  Essentially complex carbohydrates to be exact.  Just try it for a couple of weeks and see if that removes the inflammation and pain.  

    You are what you eat unfotunately.

  • debbi0140
    debbi0140 Rayro89

    Posted

    I  am so sorry to hear of your problems. I've had AS for 16 years and my son has had it since he was 7....that's right and might be something you haven't thought of. It's genetic so it may turn out that one of your children may develope it too. I don't say this to scare you but to make you aware to keep an eye on your kids. And to also keep them as active as possible cause the longer you stay moving the LONGER you stay moving. You didn't mention if you are on any medication yet. There are a lot of things that I can share with you but it can be a littleoverwhelming so let's just start with that you have found a great site with lots of great people on here who are always willing to share with you. Good luck and I'm here for you. 
    • Rayro89
      Rayro89 debbi0140

      Posted

      Thank you so much. I'm  on naproxen, but it seems like I have to take 3 just to dull the pain. And it isn't dulled for long at all maybe an hour
    • debbi0140
      debbi0140 Rayro89

      Posted

      Which country do you live in?  You will basically be on anti inflammatories for the rest of your life. You may find stretching helps relieve some of the pain but you have to listen to your body and only do as much as you can do without you going into a flare up. The doctors also seem to get stuck on 3 anti imflamtory pills when there are like 12 different kinds so if one doesn't work ask to try a different one. Have you gone to a specialist yet? Are you still able to work? And is it mainly your back at this point? 
    • Rayro89
      Rayro89 debbi0140

      Posted

      I live in the us. I go see the specialist next month. Apparently he's a busy man! I am still able to work,  and it's mainly my lower back and hip right now..
    • debbi0140
      debbi0140 Rayro89

      Posted

      I live up here in Canada so our health care is a little deferent but typical it takes awhile to get in to see them the first time but after it usually doesn't take as long. Good for you that you are working. I work as a nurse and was doing so till last sept when I had to go off my bio meds for about 5 months so I could have surgery   Well now I've gone into major flare up that we are trying to settle back down. Sadly I think that there has been enough permanent damage done that I won't be able to go back to my old position and will have to find a lighter nursing job. Good luck and keep me posted on how you are doing. 
  • trevorc3
    trevorc3 Rayro89

    Posted

    A lot of gentle exersise is important no matter what pills you are on.I found Celebrex very. Over the last few years I have been prescribed a number of diffeent things but they either did not work or had unpleasant side effects.I have recently come off small doses of Morphine and am using an "alternative product called dl-Phenylalanine.It seems to be working pretty well for me and I do not get any side effects that I have noticed yet.

    Never heard the Starch thing before, might be worth a go.

    Good luck .

    • debbi0140
      debbi0140 trevorc3

      Posted

      Interesting.... I've never heard of that medication before. I am on both fast acting and slow release oxycodone and my son who is now 22 is on fentayl patch and fast acting oxycodone. The problem of course as you know this is a life long condition and a person doesn't want to go through all the different pain controls and then have nothing left to turn to. Where do you get that dl-phenylalane from?  How does it help?  How long have you had this condition?  Are you the only one in your family?  I personal don't know anyone that has AS.... While besides my son. What country are you from. I think that it is very interesting how this disease is treated in different parts if the world. 
    • trevorc3
      trevorc3 debbi0140

      Posted

      I was diagnosed 15 years ago.My pills came from Holland and Barrett in the U.K. but I am sure you can find many sources on the net.

      Incidently my brother ,who was diagnosed younger than I, found that after about 20 years he stopped deteriorating and the pain became minimal.

      I understand the dl-P blocks certain signals to the brain in a similar way to Morphine. Maybe I am just going through a quiet spell at the moment, I do find it flares up and has quieter periods, but one Doc I saw seemed surprised that I could still walk and I have been told I will end my life in a wheelchair so I am just hoping that the dl-P really is working for me. As it is the only medication I am on at the moment it must be doing some good.

    • debbi0140
      debbi0140 trevorc3

      Posted

      I will agree to a certain degree that the pain changes. 

      My son has chosen after trying a few different bio meds to stop taking them. His disease has definitely progressed much more rapidly then mine. Both of our doctors have said the samething in regarding to ending up in a wheelchair. I'm defiantly in a flare up which is almost going on for a year. According to my specialist they are discovering a new way of dealing with this disease but it's still at least 5 years away. If you don't mind me asking how old are you and your brother ? I've tried humaira which I was allergic to and  on enbrel. My son was on remicade which was a miracle but then his body built up a resistance against it which really didn't a number on his lymph system. He then went on to try humaira which he too was a allergic too. I guess the best thing we can do is talk to others that have it to see what other people are doing. Is your brother in a wheelchair?

    • trevorc3
      trevorc3 debbi0140

      Posted

      My brother was about 20 when diagnosed.He was in the Army at the time and came out rated G8, in the UK if you are G9 you are dead. He is now 67 and so has had only a little pain for a long time.He is still walking o.k. but he lost about 5-6 inches in height as his spine bent.

      I am 71, I had been having back pain for many years but did not get the full AS symptons until I was 56.I have lost 2 inches in height as my spine has gone sidewards about 6 vertebtae from the bottom. Sometimes if I twist a little my back seizes up and I have to be carefull how I straighten up but at least I can still stand up quite straight, just a bit round shoulders. I definitely benefitted from my brothers experience, I knew what to expect and took measures to counteract it as best possible,

       

    • trevorc3
      trevorc3 debbi0140

      Posted

      Incidently on't think I mentioned that I live in Spain. The weather here has been a great hwith my health.
    • debbi0140
      debbi0140 trevorc3

      Posted

      That is very encouraging as I'm in a bad place right now with dang disease that it's nice to hear of people that have already traveled this road and survived it. I was just mentioning to my husband that we are probably going to have to move to a place that has more stable climate ... 
    • Rayro89
      Rayro89 debbi0140

      Posted

      Aside from the severe problem in my lower back, my feet tend to "fall asleep" or that annoying needle poking feeling in my feet. Is this normal?
    • trevorc3
      trevorc3 Rayro89

      Posted

      Never had that one Ray. Painful stiff neck, Hot eyes (Iritis)Tight chest, aching hips but never the foot problem.I would get it checked with a medical professional.
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