Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newly Diagnosed and feeling lost

Hello everyone. My name is Tracey, and I am a 31 year old married mother of 2 young children(5(b)&6(g)). I have been suffering with lower back pain since I am about 16/17, and was turned away from a dr at 22 because he took one look at my tattoos and said he wasn't giving me pain medicine, even though i never asked for any and cried for him to help find what was wrong. Fast forward to 2009 after having my son and being left with a terrible "sciatic pain", my husband finally convinced me to see a chiropractor. He ended up sending me to a spine specialist after aggravating my condition. After an MRI that showed progressive deterioration and no fluid in my SI joint, i was off to my first rheumatologist. He was an elderly man that seemed a little too eager for me. After blood work testing HLBA27 positive and a physical exam, he diagnosed me with a "chronic illness" called AS. He told me he was sorry, and he would start me on meds right away. I could not grasp why he was sorry and I needed meds! After 3 failed attempts at anti-inflammatories that each landed me in the ER because I am highly allergic to sulfa, he said he would start me on Humira. Needless to say, I ran out of that office and never looked back.... Injections after 2 office visits? I could not convince myself that this was the truth and it was happening to me. Rheumatologist #2 was the exact opposite... Said i had no such disease and had me thinking I was losing my mind and there was really nothing wrong with me. Had no insurance for 2 years and when i finally went back to him, i realized I was crazy.... For staying with this dr!
In August I found a rheumatologist who seems like he is on the right track... He examined me and sent me for an updated MRI, but told me he has never seem such random symptoms in a person and believed i did not physically prove AS. I received a call one week after my MRI saying that i had AS and fibromyalgia and i need to see the dr immediately. I couldn't help but think to myself, "do i make another run for it?!" But I didn't, because I can not afford to continue living the way i do.
Here I am today fighting with my own mind, thinking disease is just an ugly word... It's not really that bad right?! I am in a never ending battle with pain and fatigue, random symptoms, medicines that have terrible effects on me, and the loneliest feeling in the world. This daily battle and the realization of my diagnosis is finally starting to become a reality to me, and I can not find a way to get a hold of it. My husband is a wonderful support, and my beautiful children are truly the reason I get up everyday and function the way I do. I just can't seem to get my head around this... One day I feel fine so I don't think or worry about, but the next day when I limp because my hip hurts so bad, I battle with myself on how to deal. I am lost and have never felt more alone in my life! I suppose in all these years of pain I thought when I finally got answers, it would be a huge relief... It is not but the exact opposite.... Now what?!?

I have recently tried celebrex and it diid nothing for the pain and I started to look sunburned from it, so I stopped it and am waiting to hear back from my rheumatologist.

Hello Tracey,

Welcome to Kickas, you found great site for support and also learning about AS.

Many here have had that lost feeling at one time or another. I had first symptoms at 21 in college... left me but came back for good at 25. I was tossed around for a year getting my diagnosis, I am a fortunate one that it only took 1 year, but my case is very classic "old school" AS.

There are many treatment options, azulfadine worked well for me at first, but not available to you if allergic to sulfur. There are many new TNF meds... but others that members here have success with. There are members here that also have success with dietary changes.

Learn all you can so you can make the best decisions for yourself and working with your rheumy.

Better days are ahead... take one day at a time and keep coming back here if you have questions.

Tim

Hi Tracey. I went for several years feeling terrible, physically and emotionally, before I got a diagnosis in 2002. When I got the diagnosis I was stunned, especially when the rheumy referred to AS as a "degenerative disease there was no cure for." I suppose that like you I just wanted everything to be alright- but it obviously wasn't. The "good news" with AS and related conditions is that, despite conventional medicine's label of "degenerative with no cure," many people have found treatment combinations that work wonders for them. I empathize with your lonely feeling, but if I might make a 2-cents suggestion: Don't run from the problem. That won't work. The way out is often THROUGH the problem. It's awesome you are supported by your family. Not everyone is, so make use of that. This disease cluster is complicated, so it can take a long time to figure out how to beat it, but with perseverance I believe that you, I, and others can win. Best wishes for you.

And a word on Celebrex plus any other NSAIDS, a lot of research indicates they make the disease process worse. I would stay away from them except maybe for occasional acute pain relief.

too bad you ran away that first time.

hopefully you won't this time.

i've been on humira for a year and a half now, best thing that ever happened to me.

not sure why you'd run away from someone trying to help you?

i wish someone had tried to help me for the 12 years i went to several rheumies; thankfully someone finally did and i was so thankful for their help.

you are blessed to have doctors trying to help you.

I am not aware of any medical research that indicates that NSAIDs make the disease process worse in AS. There are a few personal stories that are repeatedly posted to this and other sites that make that claim. However, these ancedotal stories have no basis in scientific fact - they are simply the opinion of a few individual patients. Can you provide links to peer reviewed medical research on this topic?

Tracey,
Have you tried the NSD diet? For some it has brought enormous relief in symptoms. Like you I have run from biologics and TNF inhibitors. I am too afraid to shut down my immune system.

Going gluten free as well as no starch, grains, dairy, refined sugar or soy has made a big difference for me. There is also the Autoimmune Paleo diet that alot have had success with as well.

I am currently working with a Naturopath to treat SIBO, small intestinal bacterial overgrowth as well as candida which csn definitely aggravate symptoms.

Another avenue you may want to explore is low dose antibiotics. The Road Back Foundation is a wonderful supportive group for this.
http://www.roadback.org/forum/index.php

Thank you all for your testimonies and guidance. I truly appreciate the help. The past few months i have had such bad stomach issues that i can not even eat starches anymore, and i have been dairy free for a fee years as well, bc my stomach suddenly can not handle it. I will be lookinng into all suggestions. The reason I ran was because I was a 25 year old mom of 2 babies and the thought of injections was very scary to me and they still worry me. My next step in these forums is getting the information I need first hand from people taking Humira. Thank You all for your kind words and helpfulness.

Hi Tracey- sorry you are hitting the reality of having AS. I tried NSAIDs first after my diagnosis and my tummy couldn't tolerate them as well. I am sure it was a blessing in disguise because NSAIDs can progress the disease. But sometimes you gotta do what you gotta do to function so by all means take them if you have to, to be a Mom. I started biologics after NSAIDs ruined my gut. I didn't tolerate the biologics made from non human but do fine with no preservatives and human made biologics. Sometimes, it a trial and error with meds and diet until you find a combo that helps. Your emotions will be better once you start to feel better on medication so don't worry. AS can be hard but you can win the war with some work so keep on fighting.

Shari

This story sounds SO familiar to me, Tracey. I did just about the same thing.

I got my diagnosis just before spending a couple years without health insurance, myself. This, in combination with just trying to ignore the diagnosis altogether, resulted in a few years of AS fusion that I can't get back.

These days, though, I'm trying to get back on track and knowing that there are other people going through the same process makes things a lot easier.

I just wrote something on my blog about dealing with chronic pain and was surprised, while I was researching it, to discover that social support groups can play a massive role in limiting the pain you feel.

You can read it here:
http://www.everydaybattle.com/psychological-effects-chronic-pain/

Don't ever let the pain get the best of you, and always remember that you're never alone in your suffering!

Hi I'm glad you found this forum! You'll find support here.