Pain every day for the last 5 years had enough

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Hi I have had AS for 10 years now I am 28 now.  I have had both my hips replaced due to this illness and thought after the ops were over I would be pain free. I take humira and methoject but my pain levels are still so bad. I on about 9 codein a day. Just think what the point of taking all these terrible drugs when still in pain everyday. I alway hear people saying there AS is in remission never understood why they get that and mine just bad evey single day of my life had enough fighting it. Is there anyone else with AS who suffers literally every day. 

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  • Posted

    Hi Darren it's horrible innit.last year about this time they changed my injections 4 months for my body to except it could not walk 50 feet unaided.used my stick whilst out and my vanity had always stopped me doing it I take 2 different painkillers daily inject once a week and started on morphine patches..hip constant pain back in bits neck pain which we all know feels like a bloody migraine and right leg pain.i dread to think what I would be like without my pain relief and never want to find out .chin up son keep battling I know it's hard but keep fighting it good luck.

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  • Posted

    I'm so sorry that you are going though all that pain!

    I'm at the beginning of the AS journey, so I cannot say that I suffer every day, but what I went through was  pure hell. And it took so little for me to lose hope. It felt as if there was no way out. 

    I'll share my more than limited experience, hopefully you might find something interesting.

    Right now I'm on prednisone, which is, as far as I understood, a temporary solution to stop/diminish the inflammation. I have no idea what will the long-term therapy be.

    I reacted extremely badly to codein. Headaches, nausea, vomiting, no pain relief, just drowsy. My rheumatologist put me for four days only on Acupan and it has helped tremendously with the pain, but I decided to take it only for 2 1/2 days, because I managed the pain with guided meditations I found on the internet (I know how not-serious this sounds but it helped me!).

    I'm sure that  my pain is nowhere near what your going through, but you should reevaluate your approach with your doctor. Maybe he could put you on something else. 

    As soon as I was diagnosed, I read a lot about the AS and excluded starches from my diet. I have no idea if it's helping since I'm still on prednisone (6th day of 12), but I've read about some positive experiences. 

    Incidentally, years before my diagnosis I have noticed that starches make me bloat, swell and slow me down. The moment I stopped eating them for what ever reason, I would feel so much better. I don't know if there's a link or not.  

    I feel better after moving a bit. The hardest part was to get the inflammation levels to the point where I could move. Cramps in my back were unbearable. 

    Don't give up! Try different approaches. I'd start with the food, if you haven't yet and consult again my doctor. 

     

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  • Posted

    Hi I have it too but with God’s grace under control. You may need to change your biologic . I use remicade infusion and that works wonders. Secondly control both sugar and salt intake. Turmeric curcumin capsules from gnc has helped a lot try it . 
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  • Posted

    Hi Darren 1989 I was told I have a.s. two years ago and pain doesn't seem to go away haven't had any surgeries yet hope I don't have to just wish that people wouldn't take disease as a joke

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  • Posted

    When my doctor first told me I may have AS (still waiting for MRI) the first thing I did was look up natural treatment. My body does not like medication. The last time I took pain meds for two weeks I got chronic gastritis for like 9months! I don't want to go down that road and I'm so scared of the side affects.

    Anyway I have given up gluten and dairy and many of my symptoms went away but it wasn't until i have up starch and citrus too that my gastritis and IBS went away. There is a link between IBS and AS so I think if this diet is helping the IBS then it may also help AS.

    Look up ketogenic diets or low starch/low carb. It's not as hard as people think to follow. The main thing it cutting sugar and flour really.

    I also take supplements. Pro-biotics, aloe Vera, turmeric, omega 3,6,9 with vitamin D.

    I have no idea if it will work or not but it's worth a try. It will take a lot for me to accept a life of long term medication. I'm not ready to deal with that so I'm trying this right now.

    I hope you get some relief soon!

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