Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is this normal for people with AS ?

I was recently diagnosed with AS. Couple of days ago I was applying pain relief therapy on my lower back, as I started going up the spine there are areas that hurt when you touch them. No pain in my lower back, then as I go up it hurts when I touch it, then no pain, then it hurts again. Could this be, because of the disease ?

My rheumatologist said that only the sacrum is affected so far, and the disease is in beginning stage, but why do I have pain all over the spine?

Hi, MarkyT:

AS is a systemic disease; it could eventually even get to Your eyes and beyond. It affects every tissue in our bodies.

The point Your physician was making is that the visible damage is confined to Your SIJ--the permanent damage takes time, pain, and inflammation is the process that results in the damage.

A competent rheumatologist should be able to tell You how to PREVENT further damage, but the pain You are experiencing in Your spine is the activity of AS that will eventually lead to "poker spine" or "bamboo spine" and even pseudoarthropies if You are as unlucky as myself.

This pain in Your spine means that Your treatments are not effective, and eventually the damage will be revealed by X-ray: "Lipping," "squaring," then on to osteophytes and syndesmophytes.

There is much more that You can (and should-) do on Your own than anyone else, including the best physicians, to affect the eventual disease outcome. If You 'learn to live' with the pain, You will eventually need to learn to live with the damage--and spinal degredation that could require multiple surgeries. Better to learn to defeat AS--and do this early enough to save You much anguish!

HEALTH,
John

You'll have varying levels of inflammation in many parts of your body.

The sacrum in your case may be the most affected at this point, but as AS (and other inflammatory conditions) is systemic, you'll have inflammation "percolating" in various other sections, especially (typically) all along the spine.

I used to have major "trigger points" along my spine. My SI joint and neck were/are the worst areas, but if I sat against a couch, or somehow applied pressure to my left shoulder blade, I would develop excruciating pain in the upper back as well.

Read up on "enthesitis", the hallmark of AS.
You have entheses points all along you spine, rib cage, (the SI joint is one major enthesis), etc., so the possibilities for "sore" spots that will hurt when pressed/manipulated are almost endless

When my inflammatory symptoms were at their worst, a physio suggested we try IMS (intra muscular stimulation - deep needling) and this aggravated the enthesitis so badly it almost put me in the ER.

So I'd say what you are experiencing is definitely part of the disease, and to reduce it would mean to lower the systemic (over all) inflammation levels (drugs, diet, whatever works for you).

every time I pop in here this guy is frightening the living daylights out of someone.

DS why do you ALWAYS give the people here the WORSE CASE SCENARIO? most of the folk here came for a little reassurance and HELPFUL advice not to be scared witless by your OTT prognosis

I think its probably fairly normal. You can have inflammation at any point of the spine. It may not be damaged enough to show up on MRI or xray, but I know I definitely have points on my spine that are really sore and other points that are OK.

So, it is normal, I'm starting sulfasalazine on Monday. He said that only the sacrum is affected so thats why I was wondering, why do I have pain in my spine and especially in the middle. It looks like I might be underestimating the disease. I sleep with no pillow now, and usually lay on my stomach for 30 minutes, twice daily, I heard it's good for keeping the spine straight. Hope we all put AS into remission....it's worst that I thought. Thanks for your help guys!

Sorry, John:

My intent is to tell what I have personally been through, which SHOULD frighten people away from the path I took; the old story does not change. I counsel not to allow the inflammation to continue--to not just adjust and put up with it, and I am right.

Now I have overcome the AS, which still wanted to rob me of my eyesight and more so--yes please do tell us YOUR story.

HEALTH,
John

Marky, sounds very familiar to me. I have experienced that the doctors and specilaists I have seen over the years know much less about this disease than those I have met who live with it. Sounds like you are catching it much sooner than I was able too, so you very likely be able to head off a lot if the possible damage it can do, as you know what you are dealing with.

I wish I had known I had AS 15 years ago and had read John's message at the time. Even 8 years ago would have been great, when I started to get points on my spine that were sore to the touch, felt deeply bruised, for no reason, damnit, I saw so many doctors and chiropractors back then, (and had become used to limping also do to low back pain with fits of sciatica) and no had a clue I had a real disease eating away and fusing my spine. I just adapted and tuned it out, popping NSAIDS, unaware of the permanent damage being done.

Thanks so much for the reality check Dragonslayer, and helping to create awareness for the reality of this disease, and the alternatives to overcome it. I wish someone had shared the reality of AS with me years ago so I knew what I was dealing with. Just thankful I at least know now!!

Got to agree with saltire on this one;

I haven't been on this forum in a very long time because I found that in nearly every single post this type of thing was being posted.
AS is a hugely variable disease and while it can be very severe and debilitating in some, others may have a relatively easy course with it.

I found that these forums, which should really have been helping me live with the condition actually just made me scared of what could happen in the future, made me afraid to take NSAIDs (despite their efficacy) and convinced me to replace it with a diet that is in need of more study before anyone can really brand it effective.

MarkyT - The sacrum is the place inflammation tends to show up first (specifically the sacroilliac joint), but as AS affects the entire spine, you may find these areas uncomfortable too, its just a bit early to see on scans.
Just after diagnosis it can be very difficult because all of this is all very new but I would try to be optimistic, take your meds if you feel you need them, see your rheumatologist at least every year and talk to them about any trouble you're having and above all remain active and do your physio; it really makes a difference.

All the best

Andy