A.S. Face 0004 : Susan Skelly

I was diagnosed almost 11 years ago while I was finishing up my last years at university.  The diagnosis came as a shock to me and left me feeling less than stellar, but I now know that I was lucky to have been diagnosed as quickly as I was – it only took about 5 months from the start of severe pain in my lower back and hips for them to figure it out – and that I was able to start treatment so quickly.

Unfortunately, treatment hasn’t gone well.  I am allergic to the majority of medications used to treat the disease (two of them nearly killed me) and am now resigned to mere pain control.

Putting 11 years down is a daunting task, so I’ll take you through a good day, typical day and bad day for me.

Good day:

Wake up with mild stiffness in lower back – hot shower takes care of that.

Go about my day with only a slight reminder that I am sick with something.

I have about 1 or 2 good days a month.

Typical day:

Wake up feeling like my spine and every joint from the nape of my neck to my knees have been battered by a pack of Lilliputians while I was sleeping.

Shower does not help.  Get ready for work and mentally prepare myself to be shoved and mashed as I ride the bus and then Metro train
into work.

By noon I can feel a migraine coming on, and can’t sit still at work because of the pain.  By 3 p.m. the fatigue starts to set in… and when I say fatigue I mean the feeling that you are carrying a 5-storey brick house around and that your legs are in irons.

By the time I get home I can almost forget about having the energy or strength to do anything – from cooking diner to actually spending real quality time with my daughter.

Bad day:

If I don’t wake up in the middle of the night from the pain, I certainly feel it when the alarm goes off.  The pain is enough to make you cry or be sick.  If I actually get up within an hour it will be a miracle.  My spine feels like it is encased in lava, my joints are all screaming, my body is visibly swollen and my skin is sensitive to the touch of even my pajamas.  Walking feels more like I am willingly shattering my joints with a sledge hammer. I likely won’t manage anything other than to lie on the floor writhing in pain for the next 2-7 hours.  These bad days typically drag on into the next and the next, gradually becoming tolerably bad days until they are simply typical again.

I have about 10 of these days a month.

Moscow, Russia

14 Responses to “A.S. Face 0004 : Susan Skelly”

  1. I am so sorry for you Susan I can well remember being like this at your age and finding every day a big struggle difference is I wasn’t diagnosed took 23 years for me. Thank you for your story. xx

  2. Dear Susan,
    We so appreciate you sharing your story with us. The struggles and the length to finding a diagnoses is so unfair to all of us. I hope by doing this site, maybe one day the diagnoses will come sooner. Thank you so much.

  3. I truly feel sorry for your condition. I am very lucky that the medication helps me greatly. I can’t imagine what it would be like just using self will. Best of luck and I pray you can find some relief.

  4. Susan,
    There is no denying your challenges are not easy. I admire you for the strength you have to deal with A.S. with only pain control. You are a very strong person. My hope for you is that something is found that you are not allergic to and that helps. Thank you so much for sharing your story.

  5. I can relate to your story.In particular the fatigue and sensitive skin.You put into words how much fatigue has effected me.Sometimes my wife will touch me gently on my shoulder or where ever,and I will just about jump out of me seat.My muscles are always so tense from protecting from pain,that a small touch makes you jump.She is so afraid to hurt me,it has the adverse effect of loss of intamacy.
    When I read your story,it makes me wish I could help you.But thank you for letting me read your story,and basically telling my that I am not the only one feeling this way
    Thank you

  6. I am so very sorry that you cannot take any of the meds that could help your AS :’-( I wish you more good days than bad and I hope research continues to improve the meds so you will be able to benefit from them as well! Stay strong and know you are not alone. We can all hold each other up.

    Jenn Farrell said this on October 10, 2011 at 2:08 am

  7. Susan,

    I am almost crying to see such a beautiful young woman in your picture ravaged by AS. I am from a young man from Australia, and have had AS for about a year and a half but have had Crohn’s Disease for 14 years. I was diagnosed like yourself, very quickly, but over the last 12 months it has turned my life upside down, however, your strength and courage are to be commended. I have started treating the AS naturally as a lot of meds are reactive with my system like yourself. Please google AS and leaky gut syndrome as i believe gut health is the major cause in AS.


    Chris said this on October 10, 2011 at 3:24 am

  8. i feel you pain, thanks for sharing!

    Deb Wilcox said this on October 15, 2011 at 6:19 am

  9. I can relate too, thanks for sharing, it means a lot to me. I hope you find something that works for you. It is so hard to go with out anything. I had AS and arthritis pain for most of my life and have only been on meds for it for the last 12 years or so..I am 47 now. I wish I could have read a story like yours when I was in my teens or even earlier…I am sure someone reading this who is not diagnosed and wondering, will be encouraged to do something about it.

    Diane Scribe Niiganii said this on October 19, 2011 at 3:56 am

  10. You have written the chapters of my book….I can completely relate and I hope that someday soon we will all be pain free. All the best!

    Angela said this on October 21, 2011 at 4:38 pm

  11. Hi Susan,
    I have never heard of this disease until somebody on Facebook mentioned it. I feel for you and some of us don’t realise how lucky we are. I see you are in Russia and wonder if you have tried Scenar Therapy for your pain and perhaps a cure? I have been doing research on this and it was actually invented in Russia and is great for pain relief. I see you have not had success with traditional medicine and I am not a fan of drugs which are just chemicals foreign to the body. Anyway I wish you all the best and hope you can find a cure.

  12. Wishing you exceptional days ahead. Thank you for sharing.

  13. Hello Susan, I just wanted to let you know that I cannot take the regular RA drugs for my RA/AS/Reiters Syndrome either. I have been reading up on all of this for the last 3 years and saw that some places, like Mayo Clinic, have had good results with antibiotics and prednisone. I take the mildest form of prednisone, 4 mg, every other week, and antibiotics every 3 to 8 weeks. When I took the antibiotics the first time, about 1/3 of the pain stopped. The same happened with the prednisone. However, I am 66 years old, and don’t have to worry too much about the long-term effects of steroids…. how long can I live anyway? I have also had good results taking a Kenalog (steroid) shot once every 3 months. Kenalog is designed to cover just about the entire body. You could take those without having too much future consequences of steriods. At least not in the way you would from the pills. I got a big bonus when I started mine, as it got rid of most of my asthma which I have had since birth. I don’t have to lug the nebulizer machine to work or other places all the time. Steroids cure just about everything on the planet including bad breath and hangnails. I had been taking Kenalog and prednisone (for severe bouts) of asthma, for years. But taking it twice a month at your age would cause a lot of side-effects later on. ( I am already bruising and bleeding like crazy from every scratch or bump.) You might talk it over with your doctor. Just a shot and antibiotics (i rotate them…not the same ones each time,) should be ok. But I am not a doctor… so please talk over the long-term effects with him. God bless you dear. When I pray for me, I pray for us all. When I pray for my husband, I pray for all the spouses, and also the children. Hopefully you will live long enough to see the cure in your lifetime.

  14. I have had AS arthritis for nearly 30 years – my mother took me to a clinic in the UK at age 17 – called The Burghwood Clinic – I was put on an elimination diet…. My long journey of ups and downs began, but food and my gut health plays a huge role in my disease. 20 years without wheat, barley, corn and now avoid soy and cows milk. A few stiff ribs and a slightly lumpy back, occasional sore hips but rare flares and can exercise most of the time. My Dad has AS with two hip replaced and a fused rib cage and spine – I am sure I was also heading this way.
    I buy in to the reaction hypothesis – with bacteria and dietry proteins leaking in from the gut causing my flares – all my flares are accompanied by abdominal gripe! When I eat too richly.
    Your bravery is an inspiration. I have also shunned meds.

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