back pain and neck pain for years help!!

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Hi ive been suffering with neck pain , migraines, shoulder inflammation for prob bout 20 years had loads of physio on and off over the years , had sciatica whilst pregnant . Went to natural helth clinic and had some mctimoney chiropractor work on my back 2 years agao but went back bout 2months ago as back painful again she recommende md to get an xray . Went to dr got sent for blood test which is normal , then had lumbar xray which again is normal so wot to do now ?? Still in pain all around hip area and low back , stiff and sore all up spine area feels like I got really tight jacket on , shoulders and neck stiff . Been off work for 4 weeks the nurse where I work say if my back still bad I cant work im a cleaner at center parcs which is very hard work ! How do I no if I can do my job till I try getting really fed up now . Feel if I dont find out wots wrong now I will enc up a lot worse than I am now and im only 44 lifes to short . Need someobe to discuss it with think everyone fed up with me .

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  • Posted

    What you do is demand a referral to a board certified rheumatologist so that you can get an accurate diagnosis.

    Are you in the UK?

    FYI:  there are a number of diseases that don't show up on blood work or x-rays until much later, if at all.

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    • Posted

      Hi lynn , yes im near bath in the uk . I have dr appointment 2mor so hoping that he will refer me for more tests and not just send me away! The difficult thibg is that I havnt been able to see the same dr each time so it like starting from scratch each time I go . Just feel like ure moaning all the time its just painful all the time .thanks for your reply
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  • Posted

    Well saw dr yesterday who told me my blood tests normal, my xray result are normal so basically there is nothing wrong with you !!! Of course I was not happy with that told them if there us nothing wrong why am I in so much pain !! I was getting annoyed by then as I have been off work for a month and still unable to work due to being a villa cleaner at center parcs .dr looked at my back again and said your back is very inflammed I said yes I no ! I said I need more tests , after about 20 mins of keeping on she has now refereed me to a rhumotoligist for further testing , and has put me on a 3 day course of steriod tablets to see if that helps . I have physio tomorrow morning see if that helps . And now to wait for a letter from rhumotoligist hope it dont take long !! Dr said xray say its not ankylosis spondilitis but not sure they can tell this from a basic lumbar xray ! Dr thinks poss fibermaralgia who nos just want it sorted !!
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  • Posted

    Your story is all too familiar with my as diagnosis.  Thats how my AS started and I had an amazing rheumatologist that knew right away. Question about your pain. Do you have pain when you wake up that gets better with exercise?  Do short naps help the pain?  
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    • Posted

      Hi when I get up in the morning I can hardly move im so stiff and everything clicking ! But after a while of moving around it gets easier. I have taken short naps in the afternoon for years cause always feel tired in the afternoons . It seems to relax everything . Went to physio today and he said yea its just general low back pain ! Yea right !! He tried to do some massage on my back but he couldnt as all down my back was agony and across my bum my leg also been hurting today .when I told him I been refereed to pneurologist he was shocked and told him I started steriods this morn . He has asked me to go back next week for accupunture not sure wot that will do but think its more for his training than for me !! I really am getting fed up with it all now gd job im on antidepressanrs already !! As for my neck and shoulder pain and stifness he wasnt interested ! Thanks for ure reply have you been diaganosed??
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  • Posted

    So I totally went through everything ur saying.  If I were t do it again I wouldn't have gone to chiro and acupuncture till I was diagnosed. I went to the wrong chiro that didn't know much about AS and really hurt me bad.  When you see your rheumatologist ask him to test you for a gene in your blood call HLA-27. That is the red flag that you have AS.  What is your diet like?
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    • Posted

      Not to bad but suppose we could all do with more fresh fruit and veg . Im hoping to get letter from rheumatologist will come quite quick as ive alresdy been off a month from work . I have had a blood test but dont no what they tested for !! Do u have bad neck and shoulders aswell ??
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  • Posted

    Yes for about 10 years. I can't move my neck anymore all the way. I been on embrel and indomethacin for 4 years or so but stopped taking it 4 months ago. I changed my diet and went to a low starch, gluten free and low dairy and I'm getting amazing results, also 4 pills of omega 3 a day.  4 months so far of zero back pain. My neck is getting better every day. I'm no longer tiredd through out the day.
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    • Posted

      My neck very stiff already but when u try to say about ure neck they only want to know àbout ure back whic is annoying because my neck and shoulders hurt as much as my back to be honest . Just feel like im always moaning lol
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  • Posted

    Back pain is gone. I think my shoulders and neck were hurting for so long because of my back. I'm telling you people with AS can't digest certain foods and our body trying to burn that food I think is was causes the inflammation specially lower back and hips. If you just eat the foods that we digest easier and good bacteria foods yu can lower the swealing on your back and hips and make the pain go away
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    • Posted

      Hi beem taking predisone for 3 days now and back stiffness feels slightly better but still have very painfull neck , pain full l8wer back and buttocks and painful legs does predisone not take away pain or just inflammation ?? Having real problems sleeping now with pain in my sides and hips when I lay on them .
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  • Posted

    My mum also died of m.s at the age of 38 do you think there could be a connection with the pain I am suffering ?
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  • Posted

    Just an update , ive now had another blood test which is normal ! Ive had 2 sessions of accupunture but no better still in a lot of l8w back pain so have now got an appointment with a back specialist so we see what they say, also still awaiting to see rhumotoligist ,. Returned to work yesterday on reduced duties but very sore this morn . So getting there very slowly I think !! Any help appreciated
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  • Posted

    Hi Mandy I no doctor but when I wa diagnosed with my as, I had back pain right leg swelling inner thigh also ankle and neck pain, went to my doctors loads of times finally had a MRI scan that showed my as , am now taking etanercept injections for pain fairly good upto last two weeks cold and damp weather, try for MRI should shine some light on your pain it took me nearly a year for them to take me seriously keep on at them and good luck
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    • Posted

      Hi , I have got my mri scan this eve at bath ruh, went to see a rheumatologist and he ordered a mri scan at bath mineral hospital, so we will see if it shows anything , he did blood tests and I have a slightly raised red blood platelets, not sure what that means . The back not to vad at tge moment it seems to flare up for a while then settle agaìn jyst want some anwsers really not sure if I will find anything out this eve but hope so .
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