14 weeks in constant pain

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So I've spent the last 14 weeks in pain and it's getting worse each day I've been out of work for six weeks now but still keeping as mobile as I can taking the dog for a walk and pottering on in the house using heat pack hot water bottles and popping tablets every few hours. Is there anything I'm not doing that might offer some relief or even make the pain bearable I'm not sleeping either as its now affecting my hips and knees and I haven't been able to sleep on my back for some time Please tell me it gets better I've been joining other groups on the Internet and it seems everyone is in agony all day every day not being able to do much x

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7 Replies

  • Posted

    Hi Kayley. I too have AS. The pain is unbearable but it will eventually ease. When I started with my first bout of pain, it lasted a couple of months and the pain moved from my back to my hip, then from my hip down to my knee, it was so, so painful also have CS, and between both of them, I dont know which one is worse. I am on a ton of medication now, including morphine

    I hope you can get sorted with your medication and get some relief from the pain. Keep me informed on how you go.

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  • Posted

    I have AS & CS & have had it for over 25yrs. My neck is virtually imobile, sleep has been disrupted to such an extent, that even during the periods of relief, I don't sleep for more than 2-3 hours at a time. I have had every type of therapy & take all the usual drugs. You just have to live with it. Make the most of the good days & just get through the bad days. Right now, I am having a good period, but am too tired to take advantage today, maybe tomorrow. Just hang in there. Lee.
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  • Posted

    sudden changes in weather plays a factor in your pain.

    My suggestion: try the LOW Starch diet. It helped me out tremendousely for quite a few  years. Eliminate pasta, breads, corn syrup, corn, peas, chips, potatoes, modified food starch, potato starch,...etc.

    Look on the packaging before U buy a product and if U are uncertain purchase a iodine dropper and put in on the food item before U eat it, IF it turns black, it contains starch.


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  • Posted

    Hi there

    I am 49 - I have had AS starting at about age 18.

    Diet changes at age 26 have made a huge difference to my life. I've been a diet bore for 23 years now!

    Low starch obviously eliminates gluten - gluten is associated with increased intestinal permeability.

    AS and other autoimmune diseases are not just the body attacking us for no reason - the attack is a case of mistaken identity where a protein (a bit of us) - is recognised by an antibody that was previously targeting something else (another protein, either bacterial or dietary).

    Low starch causes certain bacteria (such as klebsiella) to be limited from you gut and colon.

    For the immune system to be activated - the protein needs to cross the gut barrier in tact. So my strategy has been NO NSAIDs ever and no gluten. Low carb / starch is my back up for emergencies but I have rarely needed it!

    I have accumulated tons of medical research on intestinal permeability- PM me if you want any to show your doctors. Doctors get 2 weeks in diet at medical school.

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    • Posted

      Yes i am interested in your information. Im also on the low starch diet and have had good success. Never heard about the nsaids elimination and the cause for that. Could you elaborate on that also.
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    • Posted

      Hi Jim

      there are lots of references in medical studies to NSAID EXACERBATING diseases such as AS and RA.   I see there use as a double edge sword - of course they ease the pain we all know that - but i think they "bit by bit" destroy the gut lining making recovery harder in the long run.

      Simply google - Intestinal Permeability NSAID.  You will find tons of articles about NSAID induced entropy.  The last thing we need as AS sufferers is more permeable gut.  Remember klesbsiella is just the start - other dietary and bacterial proteins have amino acid chains that can cross react to human tissue - if they pass undigested through the gut.

      Don't get me started on Methotrexate - as there are very recent, clear medical studies on how methotrexate effect the gut and exacerbates disease. 

      Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.


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  • Posted

    Hi Uk girl 27,

    There is such a wide variance of severity of this disease from one person to another. I would encourage you to at least give the dietary suggestions below a shot as I personallly have seen where many people are getting good results.

    My humble advise is to keep as many doors open as practically possible for avenues of treatment. Don't let anyone's biases and beliefs keep you from finding something that really could make a significant difference in your particular experience of this disease. The experience your having currently of pain is just what is happening now. Life is dynamic meaning things can change on a dime. I don't think you just have to live with the pain. That mindset alone isn't very encouraging nor does it really empower you to look for good solutions. There might be an easy solution for you like just eliminating gluten or some other food that your body reacts to. Or maybe it won't be that easy, it might take some searching.  

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