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Tips for Daily Living with Ankylosing Spondylitis

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ashley26121
ashley26121

I'm 23 years old and just got diagnosed with AS in March of this year. It took years to reach this diagnosis and is taking a long time for my medication to be approved by Public Health. I was just wondering if anyone has any tips for managing daily pain. I commute for 2 hours each day and have an office job, so any tips on how to cope with daily pain would be appreciated! 

0 likes, 15 replies

15 Replies

  • sudhir16170
    sudhir16170 ashley26121

    Posted

    My child you read the book " How not to die from diseases' by Dr Gregor and follow the diet recommended by him for two weeks. If you experience any improvement, then continue.

    • ashley26121
      ashley26121 sudhir16170

      Posted

      Thank you for your response! I will definitely check out that book. I've been trying to switch to an anti-inflammatory diet so this will be a great resource.

  • garyjm3617
    garyjm3617 ashley26121

    Posted

    Ashley hope meds approved. For pain some 35 yrs ago was Indocin, and opiates. They both did harm my body and used correctly. Was on Humira now waiting approval for cosendtx. Now do stretching and try keep good posture. Exercises by a Good physical therapist showed me how cope from meds. Currently, take Tylenol only. Wish there was magic pill, don't know any. Good luck. Took me about 2 months get good benefit from biologic drug.

    • ashley26121
      ashley26121 garyjm3617

      Posted

      I was told to take naproxen before and that caused major pain to my stomach so now I've been told to take Advil 5 times a day. I'm waiting for approval for Cosentyx too! Stretching does give temporary relief so I will definitely keep doing that.

      Thank you for your response and good luck to you too!

    • ted07101
      ted07101 garyjm3617

      Posted

      Magic pill good idea I use Enbrel since 2012 it works fast HUMIRA I try nothing , the rest are long lasting immunosuppressant , Remicade last about a month they use it in the vain Enbrel I inject subcountious myself every two weeks , Little sulphazaline plus some Celebrex amd the job is done , etanacept Enbrel 50 have work on me , just have a brake and re start keep close relation with your reumatologist, if anyone found a magic pill please tell us regards juices helps 
    • garyjm3617
      garyjm3617 ted07101

      Posted

      Ted was on Remicade, simponi, enbrel then Humira. Enbrel didn't work, Humira did but Dr stopped due to melanoma. In waiting on ins approval for Costenyx. 4 out 3420 got melanoma in phase 3. New drug got more risks. But little choice. Juice does help plus anything antiflammatorg& antioxidant. We keep on rollin. Good luck

    • garyjm3617
      garyjm3617 ashley26121

      Posted

      Ashley be careful with Advil and other Nsaids. My gastro Dr told me that's what damaged my small bowel. I have strictures and the like. Had multiple small bowel obstructions and perforations. Then surgeries cause scar tissue, more issues. U mentioned Costenyx, Dr said I could get new shingles vac. Not live vac. Be careful with pain meds. Hope your Costenyx arrives soon.

    • ted07101
      ted07101 garyjm3617

      Posted

      My iPhone crash easy is like the immune we have possible have AS to , we need to try everything what ever works for this back disorders all connected to the nervous system in the spine all body connected as one remember that keep up the good work 
    • ted07101
      ted07101 garyjm3617

      Posted

      Why all those TNF blockers no work on you ? ENBREL HUMIRA Etc And now you wait on another ,? What is your doctor say ,? HUMIRA is monoclone antibody blocker take time to work many use remicade , longer you suppress the immune longer take to go out considered if you need medical assistance or infection , I use ENBREL per two weeks I Get infection in teeth I stop , what exactly you have ?HLAB27 plus inflammation in your blood ? To try all the TNF how the body feels ? How about if that no work what is the next ? What is your rheumatologist tell you that you have ? Exactly , Celebrex voltaren May Help temporary as you say with all new drugs exist a risk ,just seriously ask your reumatologist what exact you have , what is your blood type some medications work different on some as we all are different, and some do have different side effects , use wisdom and caution in this medications because we suffer we want cure on the spot , this are serious immunosuppressants , and all work in some similar way or little different, again follow up with your doctor with caution regards 
    • garyjm3617
      garyjm3617 ted07101

      Posted

      For me biologics work then they don't. On Remicade for years, simponi few months, enbrel year and Humira for 4 yrs. Humira working to a degree but as mentioned developed melanoma. My rheumatologist had me stop. Cosentyx he tells me targets IL 17 which closely aligned to AS. Its new time will tell. Thanks

    • ted07101
      ted07101 garyjm3617

      Posted

      The drug companies make Philadelphia expirement I think with us as the medical profession keep learning as long is no suppress the immune to long infections is easy to get with those medications if we are in the 80 s they give us predisolone that is what they have then now the powerful TNF blockers the block the receptors in the TNF so the immune no attack it’s on

      My reumatologist ask me for that I say I have no idea with Enbrel after injection I feel red itching on the site of the injection 2014 i operated for thyroid cancer they give 5 years to stop 

    • garyjm3617
      garyjm3617 ted07101

      Posted

      The drugs have moved from Indocin as drug of choice for AS to TNF blocker Remicade and the rest. Thyroid cancer a eye opener. The great experiment continues. Take care
  • ted07101
    ted07101 ashley26121

    Posted

    Lovely disorder we cannot Complain do we ? We have something to remember our Ancestors, is in the blood , the white cells  very Complex disorder , the HLAB27, gene , attack about 23 to 24 so I was 1984 when I get it , something trigger this to start , unknown to many  , in the 80s was the predisolone , dangerous drug in long term now says are the TNF BLOCKERS with caution , the immune attack the back cause fusion plus the joints can attack anything , we need to learn to leave with it , can be come under control wish you well 
  • ashleigh28711
    ashleigh28711 ashley26121

    Posted

    Ice and heat are my saving graces.  Ice helps with the pain.  I also use a prescription topical anti-inflammatory called Voltaren.  Ask your doctor for it.  Some essential oils by duTerra helps alleviate pain as well.  Are you driving to and from work?  They have seat cushions that help for sitting for long periods.  My father actually uses a baby’s boppy pillow to sit on.  I like it bc it helps cushion your hips.

    Learn to incorporate stretching into your daily life. It helps to move even though that’s the last thing you feel like doing.  I stretch while sitting, when standing in line, etc.  you just gotta find ones that are quick and easy to do. 

    My doctors pushed for my meds.  I’m not sure abt your insurance company but your doctor really has to be an advocate for you bc they are the ones to persuade your insurance company.  It should not take long bc your doctor can expedite the process.  It’s taken me less than a week for approvals after initially being denied. 

    There’s a lot of strategies out there. You just have to find what works best for you.

    • ashley26121
      ashley26121 ashleigh28711

      Posted

      Hi Ashleigh,

      Thank you for your helpful tips. I have found that ice definitely helps with the inflammation so I use it on my back after work. I find heat really helps relax the ache in my knees and feet.

      For sure stretching is super important. Some days are harder than others but I try to do some stretches each morning and when I'm sitting at work

      Unfortunately my workplace is further from my house than I would like so I have to take the train and subway where the seats are pretty bad.

      I also find that going for walks at my lunch break really helps to reduce some pain and stiffness I get from sitting at my desk.

      My doctor has been submitting appeals but I have not been approved for the meds she wants me to try yet. I'm glad your doctor was able to move the process along for you! I hope the medication helps!

      Thanks for your post!

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