Help! :(

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Diagnosed with AS at the age of 17 (23 now) normally I get by okay with just my muscle relaxers and naproxen and codiene etc. However just over a week ago I woke up with the most excruciating pain behind my shoulder blades, I can't drive, do my job (I'm a nanny) or stop crying! It's wearing me down as I'm not sleeping or getting any relief and my doctor won't give me any tablets other than tramadol.

Just need some help and advice on what others have done to try help some f the pain?

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  • Posted

    Hi Robyn, I'm sorry to hear you aren't doing well.

    In my 20s I had a lot of activity in my spine between my shoulder blades. I mainly took ibuprofen with occasional pain meds, but the pain meds didn't help more than ibuprofen. They worked rarely and didn't help to relieve the inflammation- the root of the pain.

    I used moist heat and ice. A hot shower with high pressure on the area felt wonderful. Acupuncture provided pain relief and was great for relieving fatigue. Also, I recommend physical therapy with someone knowledgeable of AS. As my disease progressed in my 30s, I moved to stronger NSAIDs. Please stay active!

    I made adjustments in my routines. I couldn't raise my arms above my shoulders for a few years. I learned new ways to move around the pain. I rearranged my kitchen shelves, etc, (ex heavier items were stored at torso height, which wasn't painful.. And I made adjustments when my babies came....

    My first baby had colic, pacing was tough to do for very long. We had success with rocking chairs and lots of singing. As they grew and an urgent need to be held came, we learned it worked best for me to sit first. They would climb on my lap and I would soothe them.

    The adjustments with the little kids didn't happen 100% of the time, but saved me a tremendous amount of pain.

    I hope this help, let me know if you have questions.

    Kathleen

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  • Posted

    Hi Robyn, do you have a Rheumatologist, if so give the secretary or helpline a call and they will try and help you. It may be that you now need biologics. I started them in February and they have transformed my life. I still have pain where damage is done, it I am much less stiff and my quality of care has improved. If your not under a Rheumy then I would be asking GP for referral. I have an electric heat pad which helps and I use s TENs occasionally.

    Hope things settle soon for you 😏

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  • Posted

    Hi Robyn, I have advanced AS and can't tolerate any traditional medication anymore. I look back over the years and know that my worst flareups were related to my gut and digestion. I am taking a table spoon full of psyllium husk with 3 tablespoons of apple cidar vinigar twice a day. The apple cidar vinigar is for healthy gut bacteria and the psyllium is to keep me regular. This is just one part of my approach, but the crucial thing is not to let youself get even slightly constipated, I have worked this out the hard way. I know if you keep an on top of this one point it will help a lot.

    Best Wishes

    Scott

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  • Posted

    Hi Robyn, I have found that Tramadol is not so effective after taking it for a long time...maybe change your pain meds to Morphine patches or controlled relief tablets ( one a day )..You don't need to change the Tramadol forever but just for a while to test it's effectiveness. Diazepam is great for muscle spasms...5 m.g. at night for a few weeks...then reduce to 2 m.g. Up it again during flare ups. When these flares occur you are bound to feel depressed and tired...it's the bodies reaction to extreme pain...rest and more rest. Don't feel bad about resting...it's part of the treatment for an acute flare up. As you feel better do a little excersize...stretching ( even though it's scary to stretch ) do it gently....first your arms and then your legs just to get the circulation going again...then use your fingers..imagine a finger puppet show or a spider...little by little your fingers will send a message to other parts...and get them going too...Toes...spread them a little and then rest...do it ten times gently. Heat pads are great, I have a wheat filled one which is heated in the microwave...and applied to sore spots...( my microwave broke so I'm without one at present sad ) I would only recommend massage of the muscles not near bones please...it will make the condition much worse...so be careful. Hot shower before bed can help too. Invest in a TENS machine...but be careful to adjust the controlls to low at first. My daughter put mine on for me but forgot to turn it down...and I nearly hit the roof. I do hope that some of these ideas will help you but everyone is different...so test it all out to find the right solution for you....Good Luck and hugs too....Gloria

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  • Posted

    Thank you for all your replies. I'm finding sleeping with a hot water bottle strapped to my back is giving me a bit more movement in the mornings but still struggling. It's wearing me down!

    Could anyone please give me more information on biologics? I'm waiting for a appointment with my Rheumy.

    Robyn smile

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