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Joined: Jul 2003
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boel Offline OP
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Hello all,

Just curious... trying to figure out new symptoms. I am in so much pain right now, in my upper back, to the point that I just can't stay on my feet for any amount of time at all.

The weird thing is that this particular pain is better with rest (best when laying flat on my back) and worse, WAY worse with activity or even just being upright. (at this point, after being up for even a few minutes or less)

As I am trying to sort our what is happening, I was wondering what the symptoms are when fusing is actively happening. Does it cause pain? Severe pain? The type of pain that gets better with rest?

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That sounds a bit like what I had with an osteoporotic compression fracture. Are you at risk of osteoporosis? Have you lost any height recently?

I think I'd be going off to the doctor to see if I could get an xray of something like that (xray rather than MRI), but maybe you will get different advice from someone who understands the fusion process better.

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Black_Belt_AS_Kicker
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AS pain - during fusion and not - typically feels better with exercise and movement and worse with rest. Osteoarthritis and degenerative conditions generally feel better with rest and worse with activity.

It is not really possible to predict fusion based on symptoms. Some people experience extreme pain while fusing, others don't. The best way to know if you are fusing is an MRI. An X-ray will show evidence of fusion after it has occurred. An MRI will show evidence of the inflammatory process leading to fusion while it is occurring - and can (hopefully) be stopped or slowed with appropriate treatment.

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AS Czar
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Hello, boel:

Most people with AS never know they have it, and often reveal considerable fusion on chance X-ray later in life. There were no symptoms of pain in the process in these persons.

However, so many of us do experience excruciating pains and this is due to inflammation which sometimes leads to fusion. Pain itself cannot be a reliable indicator of fusion: NSAIDs and narcotics can decrease our pain levels but do almost nothing to reduce fusion.

There are some indicators of disease activity in less than 60% of us we indicate this through elevated ESR or CRP. If You are in pain and have elevated inflammatory markers, this is a general way to measure disease activity, so variables like diet and drugs can be evaluated.

The stage before fusion is "fibrosis," and the fusion process typically takes over two years from reduced ROM due to this; with proper dietary control and the right drug regimen, we can turn the clock back about two years, according to Professor Ebringer.

The early morning pains usually relent with exercise or activity, but some pains, especially during fibrosis or active inflammation are worse with movement.

HEALTH,
John

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boel Offline OP
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I finally have an explanation.
After 34 years of living with this, I know what AS feels like, and I have been telling the doctors this is not AS. This pain is so severe I am now unable to be on my feet at all (it sets in after a couple of minutes of being up). It is better sitting and best laying down. NOTHING like AS in other words. In fact, I am damn lucky I have my AS under control which I believe to be due to lifestyle/diet. If not, I would be suicidal by now with no way to out, since I am forced to do the worst possible thing: staying completely inactive.
In any event, my MRI showed multiple benign tumors on the spine, so best guess at this point is that they are causing the pain. I have an appointment to see a neurosurgeon a couple of weeks out, and feeling better knowing that.
It's a tricky thing, dealing with AS and having doctors wanting to treat you for AS, even while you tell them it feels nothing like it. My Rheumatologist, today, even after the MRI findings, and sending me a referral to see a neurosurgeon, said that though she agreed this did not seem like AS, in case nothing else is found, we can try prescribing some medications for AS.
I have spent my life avoiding meds and "treating" this with a diet of organic whole foods, and alternative modalities, with great success. I am not about to change that now, just because it's the only tool they have in their arsenal.
Sorry. Done venting. Going back to being happy for my referral. Thanks for listening.

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boel Offline OP
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Another update on this...
The diagnosis seems ever elusive and changing.
First they said possible compression fracture. Then benign tumors. (hemangiomas)
I still have not seen the neurosurgeon, that's slated for the 27th, but yesterday I saw my Naturopathic doctor, who specializes in pain, and he examined both my x-rays and MRI and told me the tumors are NOT the cause of my pain. They are not even in the part of the spine where my pain is, so I don't know why I was ever told they were the possible cause of the problem.

These tumors on the spine are very, very common. Most likely I have had them a very long time, and generally they just don't cause symptoms. (apparently about 12% of the population have them, yet only 1% of those are symptomatic)

This wonderful doctor gave me a thorough physical examination, unlike the "regular" doctors who just lightly tap along the spine and call it done. He examined me carefully, found the trouble spots of extreme pain and concluded I have an issue with a facet joint. All my symptoms match as well.

I am slated for Prolotherapy and Platelet Rich Plasma therapy, and he tells me the prognosis is quite good, so I am very hopeful.

Here's a page that describes it a bit:
http://oregonregenerativemedicine.com/pr...therapies-fail/

My first treatment is on the 29th.

So the diagnosis has gone from crushed vertebrae, to tumors, and now to facet joint syndrome. I still can't stay upright for more than a couple of minutes, so keep your fingers crossed for me! I can't wait to be back in action again.I sure hope the third time is the charm.


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