A.S. Face 0538: Michael

I am 57 years young & have been suffering with AS (Ankylosing Spondylitis) and Iritis over 30 years . I have had severe stages where it gotten so bad I was bed ridden because of the pain and stiffness in neck, hips, back, arms, knees, ankles & rib cage (chest) which keeps my ribs from expanding as I inhale, thus making it difficult for me to take a deep breath. My Ankylosing Spondylitis and Iritis has affected me in so many ways that I cannot put words to it. It affects my physical and emotional well being on a daily basis. I can no longer take long walks, look up at the sky, play any sports, run, stand, or sit to long without feeling pain from my hips, back and my neck. My back is now fused and my neck can only move partially up and down. I have suffered many bouts of iritis so severe they had to inject steroids into to my eyes to get my pupil back to where it is supposed to be.

My quality of life: I do not sleep very well my body aches or I feel pins and needles in my thighs and legs.

I have loss of appetite and general overall discomfort

I cannot sleep on my side as I cannot breathe very well as my rib cage does not expand as normal and it is uncomfortable. The back pain and stiffness prevents me from moving around comfortably and getting a good night’s sleep.

I can only take my meds at night as they make me too drowsy, I have learned to live with the pain by limiting the amount of pain meds during the day and take my pain meds at night so I can sleep.

I am physically unable to work any longer due to my overall medical condition -which prevent me from performing day to day functions.

I am always tired due to aching and fatigue. Getting dressed some days is a challenge due to the aching and stiffness in the mornings which can last 2-6 hours

I can no longer take bathes due to the curve in my spine which prevents me from lying down on a flat surface, so I take showers only.

I am always stiff, sore or in pain and cannot move very fast making standing or walking difficultI always try and hold onto something when I walk, I should use a cane but I refuse to do so and will work through the pain.  Also if I misstep I get a shockwave of pain that shoots up from my feet to the top of my head.

I cannot lift something to heavy if I do I pay for it later. Sometimes even lifting a simple thing as a cup of coffee can cause pain in my wrist enough to drop it.

I get bouts of depression which I try to suppress (I feel why me all the time as well as feeling useless to my children)

I can’t concentrate and forget things. My doctor has been very patient with me and has had me on a lot of different drugs for sleeping, depression.

My doctors have now prescribed Simponi and i had to get TB test which has tested positive for latent TB and have 9 monthly visits to a hospital in Kingston for blood tests. I take isoniazid and vitamin b6 daily for that .

My AS Symptoms:

Inflammation of eyes, Feel like I have the flu for 1-2 hours after waking in the morning. the more I sleep, the worse I feel My lower back and neck have fused in multiple areas. lost 4 inches in height in the past 5-10 years due to spinal curvature and deterioration severe pain and numbness, pins and needles in lower back, thighs arms and hips pain and inflammation in elbows, knees, neck continual pain in hips increased “burning” pain and numbness in lower back and hips with prolonged walking or standing Neurological symptoms such as memory loss and concentration Fatigue. Require more rest Deep pain in buttocks (“sit bone”) brain fog comes and goes Knee pain daily (am-pm)(severe some days) Rib pain (especially when first laying down or moving certain ways) Shoulder blade pain   Migraines. headaches Frequent Night Sweats, trouble sleeping and staying awake sometimes blurred vision can’t sneeze (chest pain)           weight loss

Remember that positive thinking is the first and best medicine you can take.

Best regards to all,

Michael

Canada


5 Responses to “A.S. Face 0538: Michael”

  1. Thank you for telling your story.
    I too am on Simponi, it helps me quite a bit. I hope and pray it will for you.
    Jacquie

  2. Michael: Welcome to the group. Thank you for sharing–it certainly sounds as if you are having a time of it. I will be takijng Enbrel very soon, and hope it works, as I hope that Simponi will work for you! Regards, Stephania/Face #445

  3. Dear Michael,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  4. Dearest Micheal,
    Welcome to Faces. There are so many of us who understand just what you are going though. I honestly think that just knowinig there are others who fell like you and suffer like you helps us mentally. We are not alone, we are not exagerating our pain, we are not just suffering minor back pain that will go away.
    There is nothing worse then when we are in pain someone makes a dumb comment like.. ”Back pain.. ya ya, we all suffer with back pain now and then, take an asprin you’ll feel better in a few days.. or .. ” well if you would stand straighter you wouldnt have back pain.. you have bad posture, stand straighter. I usually say .. HUH ??? and lose my hump? I love being bent over and looking like the hunched back of Notre Dame.
    we are here for you Micheal. greeting from Germany

  5. Thank you for sharing your story, I to have dealt with severe bouts of iritis and it is difficult for people to understand how much it can effect someone. I hope your pain is relieved soon with your new medication.
    Alex S.

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