Friday, April 22, 2016

Me and My Spondylitis

There are two types of spinal pain: inflammatory and mechanical.
Mechanical pain comes from moving
Inflammatory pain comes from not moving.

Spondylitis is inflammation of the spine.

Spondylitis is also known spondyloarthritis.
It is not rheumatoid arthritis or osteoarthritis.

Spondyloarthritis (say that three times fast) encompasses several types of spinal arthritis.
There is undifferentiated, juevenile, psoriatic arthritis, reactive arthritis, enteropathic arthritis, and ankylosing spondylitis.
Spodylitis.org has a lot of great information if you'd like to read more.


 Right now my rheumatologist has given mean unconfirmed diagnosis of ankylosing spodylitis.
I have the symptoms, but my X-rays do not show evidence right now. I also have some family history.


Some doctors will diagnose before radiographic evidence and some wait until it shows on MRI or X-ray.
They will do that to start more radical treatment before damage actually occurs.

My eye doctor has it written down that I do as a cause for my iritis.
Iritis is inflammation in your eye and it can make you nauseous and hurts pretty bad.

Ankylosing means stiffness or fusion. Not all people fuse.
Historically, AS has been considered more of a man's disease. It can affect anyone at any age. Even kids.

Before I ever went to the rheumatologist, I was looking up something and I stumbled upon ankylosing spondylitis and I thought it sounded like me.
Low back pain,  heel pain, shoulder pain, soreness by ankles, eye pain.
I didn't do anything about it though.

Later on I went to see my gastroenterologist and when I mentioned low back pain, he told me I needed to see a rheumatologist.
I went back to my doctor and told her that. She did an X-ray and checked my range of motion in neck and gave me a referral.
She thought maybe fibromyalgia. I didn't think so.





The doctor has it in his personal notes, but my chart doesn't mention it.
It kind of drives me nuts. My sister asks if I got a diagnosis yet and I have to say no, but he is treating me for it.
Or, I sort of have a diagnosis. That part is confusing to me

I know I am not the only one.
Some people have to wait years to get it confirmed.
I've even read on a forum a woman saying her doctor has never actually ever written it on her chart.


And then, there is that little part of me that says maybe he is wrong.
But, I remember the Schober's Test that showed loss of mobility and the degeneration of discs in lumbar and cervical spine.
The Schober's Test is to test for ankylosing spondylitis
Most older people have degeneration in their discs as part of the aging process, but the rheumy believes that is just the start of AS


This was made by a lady in one of my AS groups.

It's something that is not going to get better. Most likely, I will get a lot worse.
But, for now I get along OK.

5 comments:

  1. ugg, health crap. There are always things that can be done to help manage and even maybe stop it, one just has to be willing. After a year of them never coming up with a clear diagnosis for me I just said f it and tried everything going, found what worked and what didn't and then just stuck to what worked, some strange, some not. So there is ways, not saying one can ever fix it, but ways to mitigate most things.

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    1. Pat, some people have a lot of luck with diet. Others don't. Some people are on so many pain pills, I don't know how they aren't dead. I don't plan to go down that road. Lots of people like biologics. That is also a no go for me. Exercise helps and also the fact that I don't smoke. I do eat healthy and that is good too.

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  2. It would just be "nice" if they confirmed the diagnosis; not that the treatment would probably be any different.

    betty

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    Replies
    1. Betty, it would be. The treatment would be about the same. Writing it on a chart would probably make a difference if I ever needed/wanted to use biologics. Those are really expensive and insurance doesn't just let anyone use them.

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  3. This is horrible and not just the diagnosis but the dr's not putting it in the charts or even not wanting to recognize it. It reminds me of my disease called Ehlers-Danlos where dr's don't want to say it is and there is no test for it. They also there in fibromyalgia...the best is to try to have a positive attitude.

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Thanks for commenting.