Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello, I'm new here, and my story..... (very long)

When I was 18 I tried to join the Army. I almost made it through basic, but then all of a sudden I was struck with a horrible pain in my left hip that made it difficult for me to even walk, let alone do all the stuff needed to pass basic training. The doctors couldn't find anything wrong with me, and assumed I was faking it in an attempt to get out. I was given a choice of staying in and being put in a gimp unit while I recovered and then jump back in to finish training, or get out. I was broken, physically and emotionally, so I chose to get out. I've always thought of myself as a failure, and the fact that my husband is in the military is a constant reminder. I eventually stopped thinking about it, but it's something that pops in my thoughts every now and then.

Not long after, I started getting wicked muscle spasms all across my back. Sometimes it would be my upper back, sometimes under my shoulder blades, sometimes my sides, just everywhere. I started seeing a chiropractor, but that did nothing. Every now and then I would have another episode with one or the other hip, and it would be so bad I couldn't walk. My DH made me go to the ER, and the doctor determined the pain was in my sacroiliac joints, not my hip. She then told me I was just stressed out and I would feel better if I would find ways to relax. That became the standard answer among the slew of doctors I've seen over the years. "You're stressed, take some anti anxiety meds and see a therapist, you'll feel better."

After a while I gave up and just learned to live with it. I have 5 children ages 7,6,3,2, and 6 months. The pain never got worse with any of my pregnancies, it was like it had always been. The only difference was my episodes kept getting worse. I've been in pain day and night for the last 9 years, so my daily pain and stiffness is just something that's always there and doesn't bother me much since I'm so used to it.

For the past year or so I haven't been able to sleep in my bed because I toss and turn all night because the pain wakes me up, and I wake up in the morning more tired than the night before. I can't even remember the last time I had a full uninterrupted 8 hours of sleep. I stay up late every night because I dread the thought of tossing and turning all night. For me it's not sleeping, it's several hours of being tortured. My husband finally made me make another appointment with a new doctor after my last episode. I was in agony and couldn't move for three days and he had to stay home from work to take care of me and the kids. I was so desperate that I grabbed a bottle of percocet my husband had recently been given for his vasectomy that he never took. One pill did nothing. Two pills made me relax, but I was still in a lot of pain. Three pills were the magic number. So the next day I was walking around in a drug induced fog, but I was pain-free.

I went to the doctors appointment that I made, and spilled my guts to him. My whole history and how doctors have never taken me seriously and told me it was all in my head. He seemed real concerned and ordered blood tests and x-rays. I came back for a follow up the next week. He read the results of the x-rays and basically stated that my sacroiliac joints were jacked up. I don't remember exactly what he said, but he mentioned narrowing, calcification, and bone spurs. He also went over my blood tests and was so shocked that he had me come over and look at them for myself. He said the test that measures inflammation is 0-10 in a healthy person. Mine was a 48. He said I definitely have some type of arthritis, now we just need to figure out which one it is. I haven't officially been diagnosed, but my doctor is pretty sure I have AS. I have a referral to see a rheumatologist, and I need to schedule an MRI and more blood work.

So that's my story

Hi Scarlet,

Welcome to KA - glad you found us, but sorry you had to!

Now, at least you can have some answers, and of course you will discover that every answer just raises a whole host of new questions! You have come to the right place to ask them though, as the collective knowledge and experience in this Think Tank is massive!

Having 5 little kids must keep you on your toes - can't imagine how tired you must feel if you don't get good sleep either...

Hi Scarlet

I am not yet diagnosed

I have been promised that my HLA gene test is back tomorrow

My GP believes I have AS, I do too, but I am keeping an open mind because I do have a few symptoms that could be associated with Reactive Arthritis

Anyway, I am lucky that it seems I have no fusion, but I do have horrendous problems with my gut and sacroiliac joints

I am lucky again because the Low Starch Diet works for me, but I have had to make some modifications to it because of my problmes with Candida, now sugar, low fructose etc.

I am over all happy right now. One reason being finding this site, which I cannot even begin to tell you how much this has helped me. But especially because the diet works for me. I am terrible with medications, constant fibbromyalgia trouble if I take any of them, so every single day I thank God for the diet and for all the people that have helped me on my way

Love Joanne

Welcome to the KA board! glad you have a referral to a rheumy. Make the appointment asap because new patient appointments are usually schedule a couple of months in advance.

Having 5 children under 8 would make it hard enough to avoid sleep deprivation without pain and inflammation getting in the way. Sleep deprivation always makes me feel worse and it becomes a vicious cycle.

This is a great place to feel understand and vent when things are going badly.

Hello Scarlet83 - Welcome to KA and, like Louise's term the KA 'Think Tank' (good one Louise). OK, Welcome, sad for the reason that led your footsteps here, but good you found us.

For one, sounds like you have a decent proactive GP - that is the *first 'big step', having a GP who is batting on yr side. Well done. Now hope that you find an equally good rheumy... Your profile does not state where you are based in this wide world, but we often speak of excellent rheumies so keep an eye open for 'good' references, and likewise of course for the dumb-clucks! But, as said, with yr GP then the rheumy he recommends should be the goods - but always be prepared for taking a second opinion. As, far too many of us here have found, we have had to go the second - through to the 10th consultant before finding the right one, one who 'knows AS' is prepared to 'listen' to 'us' and to be willing to work on a one-to-one basis, treating us as intelligent as opposed to the 'thou shalt do' and 'it's all in your head' brigade etc etc...

Sounds like yu have a pretty bad time of it with stressful pain. Horrible and, trying at the same time to coping with a busy family life. Well done you, but am so glad that you have at last brought all this to the attention of yr GP.

Hope yu can sort out the rest of dealing with this AS monster. You might like to check out the KA diet forum and also the alternative forum. Could find some interesting forward planning there. But, also to be aware of the present anti-TNF drugs. There is a very big scene out there, leave no stone unturned and then you will be in a position to drive your own way forward in dealng with the *monster.

Good to meet you - keep us advised and take care.

Molly C (France)
Keeping on Keeping on (as we all do...!)

Hi Scarlet...welcome!

Your story is very similar to mine, except my brother was diagnosed with AS (who incidentally has 5 kids as well...of course he didn't bore them lol), and in telling him my symptoms, he prompted me to see a rheumy...and then a second one recommended to me from someone on here, and voila My Mom has it too. I've had a better go of it since moving to Alberta as the weather in Nova Scotia is damp, and it's much dryer out here.
Good luck..and don't give up. Hopefully some relief is on the way for you!

Cheeers,

Steph

Welcome to KA, Scarlet. One of the best things that you can do is to start a pain/stiffness journal. List in it when, where and how much pain and stiffness you feel. If you wake up in pain, make a note of it. If a NSAID make it better, note that, too. Bring the journal with you when you see any doctors. This will help them with the Dx. Somewhere on this forum is a pain map. It helps to print it off and then color in where you have pain with colored pencils. Include the pain map with your journal.

I am sorry you need to come here, but you will find that the people here are very helpful.

Donna

welcome!

so sorry you've been through the "you just need to relax" merry go round so much, but now with a doctor advocating for you, hoping this is just the turn of events you need to a quick dx and treatment plan!

Hi Scarlet, welcome to kickas. We look forward to hearing more from you. Hang around and get to know the gang. You will find lots of information, support and experience to help you along the way. Your story is very familiar to many here. I have had AS for over 40 years the first 25 years I went undiagnosed.
Cindy

Hi Scarlet, and welcome to KA.

Your story sounds familiar to me, too. I went almost 20 years without a diagnosis, except it was ME telling me that if I could just relax and let go of the stress the pain in my back would go away. It was amazing to me that the more emotional baggage I got rid of the more pain I seemed to be in!!!

Luckily, I was hit by a car at Christmas 2000 and laid up for six weeks. I say 'luckily' because I'm relatively certain that this put me into the flare that eventually resulted in me being diagnosed in October 2001. I'm so glad you finally found a doctor who listened and took you seriously. Please push for the rheumy referral ASAP so you can start treating this monster.

Also, you might check out the low starch diet. It doesn't work for everyone, but it seems that starch makes things worse for enough people that it's worth a good try. Also, make sure you stretch and do range of motion exercises every day, as this will help a great deal.

And keep asking questions. The folk here have experienced pretty much everything AS has to offer at some point or other. There's always someone happy to answer questions and offer experience.

Hugs,