long term sufferer no real diagnosis

Posted , 8 users are following.

Hi I'm new to this group. I have been suffering with joint pain and iritis for many years. I am now in my early 50's. I am positive for HLA -B27. I am on naproxen for plantar facilitis. (500mg) per day. I am in constant pain with my middle back area and have problems with tennis elbow and a painful bone spur in my ankle. I feel depressed with my situation . As everyday I'm in pain. Does anyone have suggestions that could help me please?

0 likes, 23 replies

23 Replies

  • Posted

    Hi P., sorry to hear about your situation. In pain for the past decade or so. HLA negative but tell this to my body... Know how you feel. If you are writing in this forum then you were diagnosed with AS, weren't you? So why no diagnosis? The pain is a bad thing to cope with. Did your dr try to put you on AS meds? Naproxen is not enough obviously.. Ask for a second opinion. Painkillers are always a blessing. As bad as you feel try to keep moving - pain decreases after workouts sometimes. Depression does not help too - are you just "sad depressed" or do you have a real problem? Maybe you should see a specialist about this too... Positive experiences are always helpful too smile hope that you will be put on something that helps. I don't know about the side effects of naproxen, but is it possible that it puts you down? Along with pain it can really put one down and the pain increases. Maybe it's the same here? Consult a neurologist. Good luck finding answers! Hot pillow at the aching area helps, btw. Hot water (bathes). Moderate exercise. I gave up on diary products but not sure that it helps. Sugar increases pain, that I know... That's pretty much. Sorry - have no answers (yet) myself...
    • Posted

      Thank you for your reply. I'm hoping for a second opinion soon. To my memory I have seen a couple of rhumetologists in the past and they have said that they can't say 100% that I have AS but the indications are there. I teach P.E. For my living so I am fairly active but need to be more active as I have slowed down over the years. I feel down mostly because I want to play my sport but constantly ache. I have some osteoarthritis in my knees as well. At the moment my thoracic ( middle of my back) constantly aches and I find it hard to get comfortable . Do you know the type of medications that there are out there specifically for AS sufferers? Does diet really help? Can people who suffer from AS still play sport? Sorry to as so many questions but I'm new to the forum and any advice is great fully accepted
  • Posted

    Hi again,

    >To my memory I have seen a couple of rhumetologists in the past and they have said that they can't say 100% that I have AS but the indications are there.

    The usual way to diagnose AS is via CT or MRI if CT does not show anything.

    So I am not sure what it means that your drs are not sure – did you did any of these screenings?

    They say that even an Xray can indicate AS in some cases…

    >Do you know the type of medications that there are out there specifically for AS sufferers?

    There are some biological meds which you may receive after failing the more “conventional” (cheaper) treatments.

    But I don’t understand why you were never treated as it sounds.

    >Does it help?

    Depends on your luck I guess.

    Painkillers may bring a great immediate relief – try these when you ache.

    Some help more than others, so if paracetamol does not do the work, switch to ibuprofen and so on.

    >Does diet really help?

    I don’t know but I am trying to avoid dairy products and carbs and some other things. Some say that fish oil helps. Not sure, but taking anyway.

    >Can people who suffer from AS still play sport?

    Yes. It hurts more (a lot). And at some point you cannot play as before. If you are good, no one will notice... It’s better to stay active as much as you can.

     Good luck! 

    • Posted

      Thank you very much for the reply. I have had MRI scans in the past and I do have some degeneration of the spine. I believe that taking the naproxen everyday is helping. But this was prescribed to me for the severe plantar problem. Along with orthotics. I had an X-ray on a swollen heel the other day and I have a bone spur which is causing me lots of pain. I can't remember why I was discharged without medication when the rhumetologist first saw me. I am starting the process again in a couple of weeks with an appointment with a different rhumetologist . Do you have any advice to take with me, questions etc?

      thanks for taking time out to reply

    • Posted

      Hi again, it's strange to me that you are mentioning spinal deformation but not a sacrolitic joint deformation. AS was given his name because it usually starts in a sacrolitic (sacroliatic? Not sure about the name) joint and only much later affects the spine... As for your planar spur - I know that it might not work, but try every morning when you wake up to just move your heel up and down stretching it. Worth a try.

      I am not sure about your ankle, but maybe it's related to the fact that you can't use your leg right rather than to RA... Shortly? I would ask about your sacrolitic joint. And other joints as well. The fact that you are genom positive still does not mean that you have it. I would ask for blood tests. For RA. For inflammation. For extensive physical examination. Not just the spine. And maybe I would ask for prednisone or other medication for RA/AS... Although I really am not sure about your sympthoms. Maybe its something else - I was told that spinal MRIs are not always conclusive so maybe it's "just" a disk dislocation rather than AS? Did you see an orthopedist?... Sorry that I can't help more. Heels do ache with AS. But at a much later stage as far as I know... Try the exercise for the spur. Good luck!!!

    • Posted

      Thanks very much for your reply. I will have a more thorough discussion at my next appointment


  • Posted

    Someone said we with A.S. Are prone to develop tendonitis ....have had it in shoulder, elbow, quads and even top of on foot.  We have a lot of muscle tightness .  Walking and yoga help tremendously.  Inversion table helps alleviate pressure on the spine.  Have seen a PT for exercises, which I practice regularly.  Good luck.
  • Posted


      These aches and pains you mentioned here are also my experiences, plus more. I am 62, been fully ankylosed, entire spine, neck, and rib cage for many years.It sucks, it hurts, it isnt fair,but we just deal with it. I will write what I do for myself. Every week I visit the Chiropractor. He uses D.N.f.T. That is directional non force technique. I could not tolerate bone popping, not with my spine.I also have Hot baths with Epsom salts, and other times ice packs. I have deep tissue massages when I can afford them.I also take anti inflammatory medicine from my M.D.( Sulindac) when I cant stand the pain any more. I use only enough to help and not for long at a time. Directions say 2x day, and it is 200 mg.30 mins. after anti-inflammatory medicine I take antacid tablets. I also take with food, and full glass of water.I dont take the medicine as prescribed, due to such terrible side effects.

       I also have a high tolerance to pain, but that has developed over many years. I am not tough, or macho, but if you read the precautions on nerve pain meds, and anti inflammatory meds, they are worse than the disease.

       This  has been my procedure for many years, and I am still in pain, muscle, bone, nerve, ligament, etc pains, but I manage to get by. I hope this info. helps you, and anybody else who reads it.

       These things i do, but you and others must decide what is best course of treatment for you.

    • Posted

      Thank you very much for replying. Sounds awful what you're experiencing. I have just recently had an added problem. I ruptured my right quadriceps tendon and have had a recent operation . It's left me completely inactive for a very long period of time. So stiffening up a fair bit. Really sorry to hear your in a great deal of pain. I have another Mir due in the summer. I will see then if I have anymore deterioration.



    • Posted

      Hello sir,

      Sorry to hear that. I guess this might be the destiny of all of us suffering from AS. I just shocked terribly how much pain you are withstanding. May god give you more endurance to bear that. I too gradually making my self to bear the pain & stiffness. anti-inflammatory meds are undoubltly wors than disease.

    • Posted

      Hi Pillsy,

      Get well soon. Just don't give up, these are just couple of trivial things which we can overpower easily. we all are with you.. Cheers.. smile

    • Posted

      Dear Greg, like you, I do not want to take any meds unless necessary.  However, my rheum. has me on a regimen of steroidal inflammatory med. and antiobiotic  based upon bloodwork (positive for 127 marker) and my description of low back/hip ache.  He diagnosed me with having not only AS but also PsA.  Wouldn't you know it, but I also broke out with psoriasis about the time of diagnosis of the arthritis.  After trying several inflammatory and antiobiotics for 3 months, he said I am in remission for the arthritis.  He told me to stay on the meds.  My concern is the long term side effects of these meds.  I know you are not an MD but would like your opinion.  I would like to stop the meds.  Even though I take a daily probiotic, I feel the antiobiotic is upsetting the gut flora which in turn is a contributor to my psoriasis.  Before meds, my pain level ranged from 1 to 5 (scale 1 to 10) and differed from day to day.  I firmly believe in exercising and do daily PT exercises to keep the pain level at a bearable level.  i don't have your high pain tolerance and I don't think my arthritis is advanced as yours.  I don't know if I will have bone fusion, like you.  I don't know if it will advance without taking the meds.  Please give me your  comments.
    • Posted

      Hi Yogee,

         Probiotics are great, but would work better, after the anti biotics are finished. All the medicines can have serious side effects, so that is why I have not taken them, except for sulindac when I am hurting really bad. The anti inflammatoy(Sulindac) makes me feel much better, then I stop. This may be 1 or 2 pills, or 3 or 4 over 2 or 3 day period. I just know that these pills can destroy stomach, kidneys, liver, etc. and when that happens, thats it, no more anti inflammatories at all. No type of Nsaid at all, prescribed or over the counter.I use very sparingly, and pray for better days.

          Each person must make up their own minds as to what course of treatment they will have. I just have experienced the natural approach mostly for dealing with this AS

         My pain tolerance seems to be high, but I have dealt with AS for many many years. It does get old and I get p*ssed off, but there are worse diseases we can have, just pray that doesnt happen.

    • Posted

      Thank you for your response.  You mentioned DNFT which is performed by a chiropractor.  Could you provide more information?  Since bone popping is something I think we AS folks should avoid, what does this technique help?
    • Posted


        DNFT, is Direct Non force technique.This technique can be administered for most bone, nerve, muscle, tendon problem in your body. No bone popping is involved.Always inquire before allowing anyone to pop your spine, neck, etc.I have gone to  a clinic where the Chiropractors use this technique exclusively. It was discovered in the mid 1940s, by Dr. Van Rumpt in California.It hasnt cured my AS, nor do the Chiropractors claim it will, it just helps me tolerate the nerve, muscle&, ligament pain I have.I go every week and have for many years. I take very little anti inflammatory medicine.I would venture to say that I have as much or pain as anyone

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.