A.S. Face 0691: Debra

I don’t know where to begin. Lets just say that I have had headaches since I was 12 and at 15 contracted encephalitis. At 21 had a spontaneous pneumo thorax (lung collapsed after I sprinted with my 12 year old brother) It could have been within a year or so of that that I noticed that if i stood talking to my nieghbour for too long and my spine felt like it was compressed and after these occasions i would sit and my lower back would cramp as I relaxed, then I would be okay. Continued to have low back back especially after sleeping,for many years and was told I had a curved spine and because of my pregnancies (have 5 kids all grown now) that the pain was from wear and tear.

Immigrated from South Africa to Australia in1992 and was divorced a couple of years later. Went to school to study for personal Care attendant so that I could work in aged care. In approx 2000 I started to also get what I call *broom stick handle pain) this was in my upper back where it felt like i had a broom stick in between my vertebra. This pain was worse depending on how long I was in bed. Usually though a hot shower and an hour or so later I felt better. At this time I was working night shift in an Aged Care facility and being a single mom, didn’t sleep so well during the day. Then I had a new pain. This was absolutely excruciating.On one side deep in my buttock. I could not weight bear at all. Even lifting my leg ever so slightly to take a step was agony. My daughter who was 16 at the time had to walk slowly behind me pushing my foot on the effected side so that the foot slid along the ground so that i could hobble very slowly, every step had tears running down my face. In a few days it was ok and life continued. The lumbar and thoracic pain was daily but i could manage, I did finally go to a Doc again in 2003 because the pain was worse and lasting longer after waking. He said one leg was slightly shorter than the other, took down my history and sent me off for blood tests.

The result was that I had a gene that pre disposed me for a back disease. I didnt get the name of the disease because the doctor got a phone call and had to go off on an emergency. Looking back now I am amazed that I didnt follow up on that. Maybe I was in denial because I was going to the states to get married to an American.  Left for the states in 2003 and within a couple years the marriage fell apart and I was once again a single mom with two children (the other three were chose to stay in Australia, one with her dad and the other two were 23 and 26 and on their own).  I still of course had pain daily in upper and lower back with flare ups of the hip buttock pain which was always severe and debilitating, but I returned to work to support myself and my girls after doing a course in Aged care (CNA as it is called in America)

This was an 8 week course 4 days a week 8 hours a day.  From sitting so many hours on a hard chair I suffered two massive agonising flare ups.  Ended up at the ER.  Because I had no insurance they did no tests and just filled me with pain meds that almost killed me and caused severe headaches and vomiting.  The muscel spasms are indescribable.  My older  daughter had to drive me and dress me for 3 weeks on average each time.

More massive flares followed over the next few years, one after painting a bedroom and one after moving house.  The rest of the time i was in daily pain but managed, with fllare ups in what I have since learned is sacroiliitis. Horribly painful. Finally I decided to move back to Australia which took two years of saving to pay for the fares home for the three of us.  I knew something was terribly wrong  but every time I googled my symptoms nothing matched exactly what I was going through.  Finally I told my daughter about the gene the doctor had mentioned in Australia years ago and told her to do a search describing my pain and add (caused by gene).  Within minutes she squealed *Oh my gosh mommy I think I know what you have). I read the article and they could have been describing me!  I read about the heel pain which I remembered I had during my last two pregnancies but which disappeared after the birth, and I remembered how painful my pubic bone was as if it was shifting.Heel pain has returned by the way, lasts for days then I might not get in again for many weeks and so on.

Then I thought of my son who had also had bad back pain and immediately e mailed him in Australia and told him to get tested for the HLA-B27 gene.  I couldnt as I couldnt afford it.  Bingo he had it too and was diagnosed with AS and has been on Humira now for three years.  Arrived back in Australia in 2009 and within two months was working back in Aged Care.  I rented a room in a private house as we had returned with nothing but our clothes.  First two years back  I continued the same way but with worsening pain now in entire spine from my neck (which is the cause of my headaches since childhood) to my sacro and terrible pain in my hips.

A year later I finally went to GP with my suspicions, was told I had degenerative disc disease.  I went to see another doctor and broke down sobbing saying I cannot go on like this and demanded he refer me to a rheumatologist.  Told my story, had a physical exam went for x rays and blood tests and what do you know I am HLB-27 positive and RH neg (that part of course I had known for years) and had lost the normal kyphosis of thoracic spine and flattening of lumbar spine.  EVERY disc has lipping and I have sclerosis of lumbar blah blah blah.  For the last year i have struggled more and more at work as it is very physical working in a Nursing Home.  I told my boss as soon as I got the formal diagnosis and  even showed her my x ray results and asked if I could drop two shifts and work the 7am to 1pm shifts instead of till 3 and she was fine with that, However as our Residents became more dependent the work load increased dramatically and with pushing large lifting machines around and dealing with physically resistive and some violent residents I finally had the flare up directly sent to me from hell.

Worked on the Friday, struggled through the shift.  Woke Sat after the usual tossing and turning in agony.  It took several minutes to get out of bed and I could not stand upright at all.  Whole of my thoracic and lumbar spine was on fire.  Couldnt work Sun and went to GP Monday who gave me panadiene forte and prednisone.  Made no difference to the pain.  To cut a long saga to a novellete, my pain was so severe and crippling that I became completely helpless.  I thank God my eldest daughter who lives with me was here,  For the next two weeks she had to help me out of bed and hold onto me while I spasamed so severely that my legs buckled, then assist me to shuffle agonisingly slowly, to the bathroom several times a day, dress me, make my meals, sleep on my floor in my bedroom so that when I needed to move she could help. I could not lie down or walk or sit or move at all in bed without her assistance.  She held me while I cried and was brave enough to hide her fear when I said that I cant stand this anymore and sobbed in her arms.  When i could move enough to get to my rheumy and was able to lie down to be x ray and then have a bone scan and more blood work up the decision was made to put me on Simponi as obviously I couldn’t even work and certainly had and still have (this has happened in the last 7 weeks)no quality of life.  He prescribed valium for the spasms and that worked after only a few doses and Amitryptoline (sp) Mobic which I was already on daily, Tramadol (which I had to stop because it sent my liver function up).  slowly improved over the last two weeks and then for the last week I got a nasty bout of kietzes syndrome with a very tender lump on my sternum.

Took Celebrex instead of Mobic last night and today that is a lot better.  My Rheumy applied to Aussie Government for me to be accepted for Simponi and of course as my AS is very active and sacro almost completely fused it has only taken 2 weeks to be approved which I found out yesterday.  First injection should start in one to two weeks.  So please fellow AS warriors pray that it is my wonder drug.  As of right now, I have my every day pain and stiffness which I can deal with.  Thanks for reading and I apologise for the length.  I haven’t covered everything to do with my pains but that’s the important stuff.

I have been off work now for seven week or closer to eight and have 2 dollars in the bank.  Hoping my Sickness benefits from Social Security kick in next week, which isn’t enough to pay bills but at least I will be able to eat.  Rheumy says if Simponi doesn’t improve things then I will have to go on disability.  I certainly don’t think I can return to my job anyway as not only is it too hard physically even for my colleagues who are disease free, but I believe my employer sees me now as a liability. At this moment though even with all this going on, I know there are many AS sufferers who are worse off so to those and all of us out there fighting this awful enemy, I send gentle hugs and know that you are not alone.

Forgot to mention also that I seem to have developed asthma during the last few months with shortness of breath and wheezing.  I cannot lie flat on my back at all (so all x rays and stuff are hell) because it feels like my chest is being crushed.  Chest X ray results fine thank goodness.

My name is Debra and I have AS



6 Responses to “A.S. Face 0691: Debra”

  1. Dear Debra,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. You’re an amazing lady Debra. I can tell right now that you’re gonna hang in there until the Simponi kicks in. I can see that you’re gonna hang on until you get through this bump in the road. I can see this, cause I read your story. You have “powered” through so much, that I have no doubt you’ll conquer this too. It’s who you are. The bright spot is you’re getting treatment. You know things are only going to get better. A freind of mine is a registered nurse, whose “osteo arthritis” resulted in both knee being replaced. She “powered” through the painfull work days cause she feared there would be no other job for her. Well, she finally got a desk job that put her years of experience to work…and LOVES her new job. When some doors are closed Debra, others will open. I know you’ll be patient enough to wait for the next door to open…until then, be at peace.

    • Derek thank you for your kind words. They made me cry a little because you struck a cord in me when you used the word *powered through*. During one of my ripping searing hot spasms during this latest flare, I managed to ease my way tiny tiny movements at a time to get off my bed. My daughter had placed a chair with the back about a foot from my bed so that when I was ready to stand after sitting up from my sleep position, I could grab the back of my chair when the spasm hit so that i didnt fall. Of course as I slowly stood up it hit and my legs collapsed, I gritted my teeth and held on with a death grip on that chair and yelled like a weight lifter and just stood up through the agony. Ihad tears pouring down my face but darn it, that time I WON!

      • Bravo Debra! I have no doubt you’ll win again and again. But be patient…I have no doubt your Rhuemmy will get on top of your flares and stuff em back in their bottle and screw the lid on tight…but it may take awhile. It could be next week…or it could be three months…so have faith, hope, and patience. Our worst fears never come to pass. And I think it’s wonderfull your daughter gets the opportunity to help another person. It’s a gift that will last her a lifetime.

  3. Hi Debra,
    I too am on Simponi. I love the effects. Not feeling great, a whole lot better that is for sure.
    Good luck. Thanks for sharing.

  4. WOW! Anywhere you haven’t lived?! What a story! So glad u are getting the help u need!

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