Ankylosing Spondylitis Support Group

Ankylosing Spondylitis (AS) is a chronic form of arthritis--it is an inflammatory disease that causes joints, cartilage or other fibrous tissue (such as ligaments and tendons) to turn into bone. Ankylosing spondylitis is part of the group of rheumatic diseases. The disease is characterized by progressive stiffness, tenderness, and pain in joints. Pain can be episodic and...

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Muscles & Bones
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What to expect

CChris
CChris
Hello group! My name is CChris and I am a 27 year old undergoing tests to confirm AS.

I just received the diagnosis for Common Variable Immunodeficiency Disease last week. Then, this Monday (the 18th I believe) I was told by a rheumatologist that it looks very probable that I have AS. It's interesting, because I kept complaining about my hip and walking, that it kept me up at night and the only thing that would help was yoga and deep stretching.

The weirdest thing happened: the doctor started pressing on my sacrum and lower spine and my body started shaking! She said I probably wasn't even aware about the pain in my back.

Ever since Monday, I have been in the worst pain ever. I had problems walking up hills before, but I kept thinking it was stamina and my hip, but now I am overwhelmed with the rest of my sacrum and back. I am starting anti-inflammatory things.

I read that cutting starch and meat products out of the diet helps. Have you found this to be true?

How long before the anti-inflammatories work?

I am going for a genetic blood test, and am getting an MRI and Xray of my back. Do you recommend anything in the meantime? (so that I can be pro-active about this?) Do most people only get flare-ups or is this going to affect my daily life now?

Thank you for supporting my MANY questions, and nice to meet all of you.

Regards,
CChris
deleted_user
deleted_user
Hello and welcome Cchris, to this very silent group!
First of all: sorry to meet you here. I guess there are nicer reasons to meet people. I'm not an expert when it comes to medication, since I can't take the "classical" treatment because of another health problem. So no wise words about all that. SInce anti-inflammatories and biologicals are out for me, I try to find alternatives. I started acupuncture two years ago and yes- it helps to keep the flares at bay. My doctor advised me to cut dairy out. I did, and yes again. (I've always been a vegetarian, so meat is not the problem) But I reckon that we are all different and react differently, so it's up to you to try and wait for a reaction.
AS comes usually in flare ups, yes. Though I have to admit the pain is constantly there 24/24, 7/7. Not always bad, but always noticeable. But again: We are all different, so you might be spared that. And that is my main advice: whatever you are told or read about the disease- forget it fast. Nothing is for sure. It might be bad, it might be not so bad. Simply don't concentrate too much on it and take it on a day- to- day basis. If you have more questions- there is a pm box open for you, and you are welcome to use it. I wish you well!!!
CChris
CChris
Thanks so much Calibanshour!

I am happy that you say it's variable and to forget the horrible literature out there. I am hoping to just pull through and get back to a full life very soon. Ya. I have turned veggie, cut out gluten and most starches and gone lactose free as well. Do you work out through the pain then?

And yes, this is quite the silent group....

But I am so happy you responded and i will be sure to contact you if i have any more questions!

All the best,
CChris
deleted_user
deleted_user
Well, usually I "sit" the flares out, since there is nothing much I can do. I take painkillers when it get's really nasty. But frankly- the just cut a bit the edges. As soon as this flare is gone, I'll take care of my back muscles. I cut some wood yesterday and that's a tricky thing. When I work the chainsaw more than 10 minutes I'm hardly able to get up again. I hope that's just the aftermath of a 2 and a half months onslaught. Are you HLA B27 positiv?
I reckon we should forget of any kind of literature when it comes to diseases. Well- it's important to be informed, of course. But I have some difficulties with over- informed patients. They often seem to be professionally ill, if you get the meaning. And as I said before: Our case is not necessarily going to be the worst. I take it on a day by day basis. But of course there are side effects. Like the disability of constant work, for example. That worries me a lot. It's scary, really.
I hope you'll have a delightful day!:)
curvedliz
curvedliz
Welcome to the group! 26 years old and seeing a Neurosurgeon about a recent MRI on Monday. Can't say for sure it's AS yet but if I've learned anything, it's to truck on like nothing's slowing you down but be kind to your schedule; make room for off-time, me-time, I'm-exhausted-and-need-an-extra-6-hours-of-sleep time, and hot soaks in the tub. I used to be a very busy person and I'm learning to trim down my schedule even more, since my scheduled flare-ups are behaving erratically.

I thought I had to exercise through the pain, funny reading otherwise because my body agrees with Callbanshour! I have two big energetic dogs and I enjoy romping outside for a good walk/jog with them every day but I really pay for it.
deleted_user
deleted_user
I'm still looking for a VERY wealthy 146 year old widow to marry. It's the erratic schedule of the flare ups that really run havoc into professional life. It's the economical side-effect that causes extra stress. And extra stress is the surest way to provoke another flare. Apart from humidity it is "negative" stress that triggers the bugger. At least that is my experience. And imposing "negative" stress is awfully difficult to avoid. But avoided it should be. In that I think curvedliz' yoga effort is the right thing. If it does not keep the disease itself at bay- at lest it will help with the stress-management. Or so I hope. But I think there are still more ways to be found to keep the problem at bay. I'm still searching for them. (Apart from very old and wealthy widows, of course)
lindav02
lindav02
Hi Chris, my triggers are also stress and overdoing it which is very easy for me to do since I am a single mother now. I can sympathize with all of you who say if I go and run the dog too long or overdo it on the treadmill, I sure pay for it!
I take alot of herbs and vitamins daily. Mostly glucosamine chondoritin for the cartilage, grape seed extract which acts as an antiinflammatory. I recently added oil of oregano, two drops in water each morning to help the digestive symptoms, it is also ant inflammatory. Also added creatine and glutamine, I am losing muscle mass too quickly. Doctors won't give me pain meds these day, I can't afford them but I have taken Cymbalta in the past. It worked wonders. I also do acupuncture periodically and it helps tremendously with fatigue and flare-ups. Hypnosis and meditation keep my stress levels to a manageable levels.
But my diet is first and foremost the best way I keep the inflammation down. I drink black tea now... i used to hate it, don't eat some gluten, wheat or fried foods and keep dairy to a minimum. I also don't eat much fiber at all. It tends to cause things that are similar to world war 2 in my stomach. Not good. So meats, fish, chicken and certain veggies,rice and potatoes. That's what I eat most days. Hope this is helpful.