A.S. Face 1474: Aysha

Face 1474 Face 1474 A

My Name is Aysha
I am 27 years old.
This is my story…

It started when I was 11 years old and some boys playing football hit the football so hardly on my back which made me fall on the ground and since then I am suffering from a severe backache.
Years  passed by and my backache never reduced.
I never had any tests done and I never visited any doctor for my treatment.
I would treat myself by massaging my back which would bring instant relief.
I worked as a teacher and a tutor at home and I would often suffer through severe backache and stiffness,I could never sit without a pillow behind my back.
I always needed something behind my back so that I would be comfortable.
As a working female everything was really tough for me.
Trying to come home and clean the house and take care of everything is quite a daunting task when you’ve already accomplished so much.  You just want to sit down.The more you hold off the worse things get around the house but the more you force yourself to do it the worse you get.

It started a few months ago when I carried a really heavy bag on the way to the airport since I was travelling and I was unaware of the consequences that my back wont be able to support that kind of weight.

I started visiting my physiotherapist for relieving my back ache but after going back and forth to physiotherapist which was really of no use I went to visit the Spine Specialist and my tests confirmed my fears.

I was diagnosed about 7 months ago that I am suffering from Ankylosing Spondilitis.
I broke down knowing that this pain would never go no matter how hard I try to over come it.

Since then I can’t stand for more than 1 hour my back starts aching. At night I often wakeup with a severe pain and it remains the for the whole night.
I have severe stiffness on all over my back I can’t move.My sleep is usually not sound and I can be woken up at any given moment with a shooting twinge here or a muscle spasm there.
If I try to sit straight I get tired really quickly.
The moment I start walking my back starts hurting really badly and my doctor advised me to walk at least 2km daily.
I can’t do anything without bending and most of the household chores are the ones where I am supposed to bend. The doctor asked me not to bend as it affects my back.
Even when I travel in a car I need something behind my back or else my back hurts really bad.
Sometimes it’s so embarrassing when I visit my friends and I can’t sit straight. I just refuse to visit anyone anymore.

Is anyone going through the same?

I fight it everyday and I will continue to fight it as long as I can…

India, Asia

4 Responses to “A.S. Face 1474: Aysha”

  1. Dear Aysha,
    I have lived with AS for over 20+ years and spent much of my life like you in constant pain, not being able to sit or sleep as you described. I too, could not travel in a car or a plane or go out with friends. I was put on a biologic drug call Remicade which helped to a certain degree. One year ago, I started a strict Gluten Free Diet and I am fininally living life again. My doctor doesn’t know why this has been so dramatic in reducing my pain, but, it has changed my life. I still have some degree of pain everyday, but, this diet has helped me be able to enjoy doing things I have not done in many, many years. I hope you get better. I believe you will.

  2. I’ve had it diagnosed since 1976. Ask the doctor for a nonsteroidal med, a biologic (I take Enbrel), and a short course of physical therapy to learn sitting exercises and back exercises. I use a heating pad daily. When you can, try walking or swimming. the more active you are the better. I have taken a pillow with me to my church, if you need to take it with you to visit friends, do so. They will understand. My best to you.

  3. ((hugs))

  4. Aysha try this:

    From my experience (16 years & counting) this disease has 5 major elements.

    Adrenal (reduce your cortisol levels and support your bodies adrenal/thryoid glands so that you can avoid adrenal fatigue)

    Metabolic (exercise daily – bikes are the best as they don’t challenge bones)

    GI tract – over production of Klebsiella bacteria (diet & healing your gut of perforations due to medications)

    Mold (clean up your home & avoid spaces where HVAC systems have mold spores – a sign of reactivity to mold is a short temper, sudden onset fatigue, and very red – conjunctivitis in the eyes overall. This is different from the red eye and heat that builds up from Iritis – which forms in a sun-ray pattern around the iris, blurs vision, photophobia, and tingly – spicey heat and then physical heat in the eye affected.)

    & Stress (learn to manage everything better – family, money, etc – get some good psychology information online & meditate in a quiet space.)

    These all affect the immune system & can kick into high gear – that’s your inflammation. When inflammation goes down, so does your pain, yes? SO we want your pain, any swelling anywhere, we want your emotional well-being improved and you to be in a naturally ‘happy place’. That’s the goal.

    What feels like emotional issues may actually be simply due to inflammation – which can be very confusing. So be patient and carefully learn about your body’s chemistry. Remember ice for inflammation, heat only for strained tendons – but inflammation needs to be cooled down.

    My AS started around the age of 32 (I’m now 49 & perimenopausal) – 9 months after my dad finally died following a very stressful 6 year illness and many years of alcoholism and asthma (yet another rheumatoid disease). So I now know my dad was coping with a lot of pain, emotional pain from his body chemistry being disrupted by both alcohol, and the various corticosteroids he used to manage his asthma. He also had gout – which happens with many alcoholics, but seems to be a family thing as well, because I have that gout at times when my AS provides foot problems & I have troubles being mobile & active enough to reduce inflammation.

    So what to do? For example gout can be controlled by activity (exercise), water and diet – lowering purine rich foods to lower uric acid production in the body – the water helps to get it out of the system, and the exercise gets blood moving and helps to release the painful crystals from extremities – like toes. Plus there is good advice online from various sources – drugs aren’t necessary to get rid of this. I’ve managed at least twice on my own.

    I give you this as an example of how foods, exercise & hydration can affect your body.

    Your AS is highly related to starch intake and the inability to store those starches (and also generally many sugars) – instead your body produces a lot of inflammation in response. All bodies produce inflammation from sugars btw – but yours is different and somehow over-responds to the sugars. It may also become inflamed by consuming yeasts (wine, beer, bread, yeast additives). But for me personally, corn, corn starch, and most corn sugars, oils & chemicals are absolute ‘toxins’ in me. But this is based on a threshold – or slow build up – as my exercise lessens throughout a week – my vulnerability to the inflammation goes up considerably. Prescription drugs that sit in a cornstarch or potato starch carrier will do well in me for a week or so – then strangely I would notice some additional inflammation . . . then it can max-out and I’m in far worse shape than when I first saw my rheumatologist. When I look into the composition of the Rx drugs – sure enough, there’s considerable starch base and so if I take the NSAID or DMARD at night – then lay down to sleep – inevitably I would get a very nasty inflammatory response to the drug. I believe this may be why Biologics work better: they are injected w/o the starch for fast dispersion.

    Solutions: What to eat? Go to KickAS.org and look on the left hand side on the webpage – they have a ‘diet’ published back in 1983 for AS. Follow it.

    Then add these things if you find you want to continue eating starches in low amounts – as like me – you need them for cycling or hiking up mountains & lead an active life style.

    to consume carbs: 300mg Alph lipoic acid & 18 billion (live bacterial count) Acidophillus – usually 3 pills of each, at each meal. You can add a 4th or 5th intake later in the evening if you’ve had a glass of wine or eaten dessert, & definitely if you have Iritis in your eye.

    Be very careful about carbohydrates during Iritis flares (in the eye) and drink plenty of clean water & get exercise and plenty of movement throughout the day – even if you’re just rotating joints. Also make certain you clear your bowels daily to allow excess gram-negative bacteria to leave your lower GI tract.

    Adrenals & Thyroid: being that you’re a woman and you’ve mentioned fatigue try this – trace minerals. 50mg zinc / 200mcg selenium / trace iodine via sea kelp tablets or salt / ashwaghanda – to lower your cortisol levels & to help relieve stress and your sense of fear. We all have it – it happens when the adrenals are over-pushed. (Please be careful not to take more than the prescribed amounts as minerals should only be in trace quantities & NOT with any starches or sugars for ‘non-medicinal ingredients’.)

    If you add 2000-3000mg vitamin C – that’s good because vitamin C tends to oxygenate the blood – and this will help you to be able to move better out of stiffness in the morning. Also – the more you get regular exercise that involves heavy breathing – the better your lung expansion will be and your overall ability to move in the mornings can actually return to a good healthy normal – instead of what you’ve probably been suffering through.

    To heal your stomach, there’s an amino acid called ‘L-Glutmine’ – it will help to alkalinize your stomach & gut so that it can heal after RX drugs and the general acidity your body produces with all this pain you’ve been having.

    I’ve been taking 2000mg, 3x’s a day lately as I’m healing up from attempting 3 various NSAIDS, 2 antibiotics, and an unfortunate experiment with an antacid that proved full of starch & thus, led to further inflammation.

    I wish you the very best – and I hope this helps you with your diet so that you can overcome most of your symptoms without having to go broke on the various Biologics out there. I know that for me they are unaffordable . . . and steroids are too damaging and don’t work – so these dietary and exercise principles I’ve given work. But you have to be diligent and stick to it. Also – perhaps you may find that the swelling you get from your monthly period adds to your pain – I do – and I’m hoping that when my body has finally gone fully into menopause that much of this will be done. But that could just be wishful thinking – I don’t know.

    Take good care of yourself – and find some good folks to chat with – about anything. You’ve well worth the effort, time and conversation.

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