Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is it always arthritis ?

Does anybody know what percentage of sacrioliac joint problems diagnosed are actually a form of reactive arthritis?

I know it is possible that this sacrioliac problem i have is not AS, but on average, does anybody know what the likelihood is?

And also can flares like I describe occur when it is not arthritis?

Love Joanne

Hi Joanne,
This is something I don't know the answer to because I don't know the odds between one condition and the other, but I found a couple of informative links that briefly cover other problems that can cause sacroiliac joint pain.

http://www.medicinenet.com/sacroiliac_joint_pain/article.htm
http://www.medicinenet.com/buttock_pain/symptoms.htm

Here are some tips for "Sacroiliac Joint Dysfunction" pain.
http://www.lower-back-pain-answers.com/sacroiliac-joint-dysfunction.html

From what little I understand about spondyloarthropathies in general, is that they all have the potential to cause back pain, and quite possibly, sacroiliac joint pain too.

Hi Joanne,

Given that you have one leg longer than the other, it is possible that this may be the cause of sacroiliac pain. The following quote comes from one of the links that James provided above:

Any condition that alters the normal walking pattern places increased stress on the SI joints. This could include a leg length discrepancy (one leg longer than the other), or pain in the hip, knee, ankle, or foot. Patients with severe pain in the lower extremity often develop problems with either the lower back (lumbar spine) or SI joints. In most cases if the underlying problem is treated, the associated lumbar spine or SI joint dysfunction will also improve.

Has anyone looked at treating that condition for you? And, do you know what the cause of the leg length difference is? Have you had it your whole life?

Hi Wendy

I do not know for certain what is causing the leg length discrepancy, I do think there could be a possibility I was born with it. The strange thing to me is that the shorter leg is on the left, the side that is not too bad. The bad side is my right sacriolic joint and this is the longer leg. When I limp it is the longer leg that is affected. so the shorter leg is the leg that carries me if that makes sense

It is the flares i do not understand. I know they are definately triggered by eating starch. This I am absolutely certain off. And when ever a flare is triggered my IBS is triggered simultaniously.

A flare feels like somebody is inside me punching me to the point that they want to knock me out. Although this goes on all over the place it is always the sacrioliac joint that takes the biggest bashing

the other thing that crossed my mind, but this really is conjecture, could the right side sacrioliac joint have already fused and is that why it is not as painful. I ask this because when i was younger I had more pain in my lower back than I have now and I am cetai that the left side was involved

I know it may seem strange that I can not remember. But up until I cut down on my carb intake I was constantly in pain all over. I did know the pain radiated from the right side of my pelvis, I told my doctor this over and over. But I remember when i was younger still lying on the floor and putting my hands under my pelvis with my fingers spread. The pain then was on both sides and if anything I think it was worse on the left side.

Can another condition besides AS or RA cause flares from the sacrioliac joint? could Sacrioliac Joint Dysfunction cause this? I am thinking maybe nobody can answer this.

do you know what my anxiety is.................. If I am wrog and I make myself look like a idiot again...................... but if i had to bet everything I own on this, I would bet I have it......... None of my Fibrofriends have the flares being troggered form the sacriolic joit as a symptom. And now my Fibro symptoms have died down the sacrioliac joint stands out a mile over all other pain and tenderness. It is not terribly painful now but it like nags and nags, so I cannot ignore it, it that makes sense

Love Joanne

No. Sacroiliac joint pain is more often caused by Sacroiliac Joint Dysfunction then by Ankylosing Spondylitis. Sacroiliac joint dysfunction is a common cause of the type of pain you describe and is certainly more likely to be your problem given your physiotherapist's assessment of your SI joint.



Ankylosing Spondylitis is a chronic progressive disease that involves pain, stiffness, loss of motion and possible fusion of the sacroiliac joint. If your SI joint is hyper-mobile or out of alignment 20 years after symptoms began, by definition, it can not possibly be Ankylosing Spondylitis. The diagnosis of Ankylosing Spondylitis requires radiographic evidence of sacroiliitis along with other clinical signs and symptoms. The diagnostic criteria for this disease does not contain any reference to any sort of reaction to eating starch or carbohydrates.

Absent Sacroiliitis, patients may be diagnosed with Undifferentiated Spondylitis or another Spondyloarthropathy if they exhibit other signs or symptoms of the disease. Again, patient's reaction to ingesting starch or carbs is NOT part of the diagnostic criteria.

Sacroiliac Joint Dysfunction is a relatively common cause of low back pain. The pain from SIJD can also radiate to the hip, buttock, groin, lateral thigh, knee and occasionally leg and calf. People with SIJD often limp, have leg length differences and increased pain with walking, standing or sitting. They may experience improvement with resting recumbently or changing positions often.
http://www.sidysfunction.com/articles/sacroiliacjointdysfunction1.html

People with SIJD may develop osteoarthritis in their sacroiliac joints. Osteoarthritis is caused by wear and tear, damage, joint misalignment and age. Since you are in your 40's, you may well be developing osteoarthritis there and in other joints as well. Neither SIJD or Osteoarthritis are caused by or controlled by starch or carbohydrate consumption. The reactions that you are observing may be noted because you are looking for them. Your body may also be reacting oddly to occasional ingestion of starch because your typical day-to-day diet is so restricted and limited. If you truly believe that you are experiencing near instantaneous reactions to carbohydrate consumption, you may in fact have coeliac disease. There is a form of "reactive arthritis" that is experienced by some people with coeliac that mimics AS. Fortunately for those patients, the joint pain and stiffness resolves when they remove gluten from their diets.

There are some AS patients who control their symptoms with dietary modifications. Weather or not they are truly controlling their inflammation and disease progression is something that only they and their doctors can know for sure. These patients are in the minority of AS patients worldwide. The doctor/researcher who put forth the LSD/NSD theory has not been able to convince the medical community as a whole that ingestion of starch has any bearing on the disease process. Although others have tried to replicate his work, to date, no studies outside his sphere of influence have shown such a link. He has now retired, and it is my understanding this his clinic is closed. Since he was located in England, you may find a rheumatologist in England or the UK that is familiar with and supportive of his work.

I have started and deleted several responses to your posts over the last few weeks. I am not trying to ignite a diet war or criticize those that have found some relief through the diet. I am open minded enough to have tried the diet (several times and for significant lengths of time). I personally saw no benefit to it in terms of my AS symptoms. I am a firm believer in whatever works for you, do it. However, you seem to have convinced your self that you absolutely have AS even though there are many indications to the contrary. I understand that you are excited to have found an "answer" to your longstanding pain. You are reading and researching feverishly. However, when placed on the general discussion section, your posts about diet, carbs, starch, ketosis and alternatives lend an air of credibility that this theory has not yet earned. You may find better answers on the diet or alternatives sections of the forum.

I wish you the best of luck in discovering the true cause of your pain.

I would just like to say what a very good post you have presented Stormy very well thought out and written.

Kevin

Hi, Joanne:

If I am confused, I like to share that confusion:



No, nobody knows.
Here is a list of people I know about who can suffer from SIJ problems:
Longshoremen until 1930 or so.
Farmers, football players, and rodeo riders.
People in accidents involving the hip and lower spine.
People with ReA including KRA that leads to AS.





About 15%



Probably not.


I know I don't need any caveats, but someone is wondering about it so the above is ONLY my OPINION.

HEALTH,
John

hi joanne,

can't answer your questions specifically but will tell you the reasons that my doctors are saying "working dx of inflammatory arthritis, most likely a seronegative spondyloarthropathy" is because of all my symptoms together which for me include the following though this is my list and not necessarily anybody else's list:

•gastritis
•IBS
•"crohn's-like ulcers" in the small intestine
•osteopenia (fairly significant in my lower spine)
•mouth sores
•blepharitis
•a few very bizarre skin "rashes" (one looked a lot like psoriasis over my SI joint)
•SI problems (no trauma, no babies)
•enthesopathy
•numerous tendonitises
•numerous torn tendons and ligaments
•achilles heel pain
•stiff and sore upon waking, especially the longer i am in bed, the stiffer and sorer i am
•flares
•responds to nsaids (though can't take due to edema and gastritis)
•responds to prednisone

if its just the SI joint, several ways to explain it i think. but if its more of an overall systemic thing, think its the putting together of symptoms that eventually leads to a dx, at least that's the way it seems to be going for me.

hope this helps in some small way.

Thanks Kevin!

hello again,

i had gotten to a point where i felt i could "manage" so many of my symptoms, but the SI joint i just couldn't. the only things that seemed to manage it were nsaids (that i couldn't take due to the side effects), cortisone injections (but didn't relish having that done every 6 months), and ice (24/7 which really isn't practical and wasn't really helping enough anyway). and most recently now discovered that prednisone also helps (though that longterm is also not a good thing due to its side effects).

but right now wearing a flector patch 24/7 and changing it every 12 hours is sort of working. didn't flare on me from april (when i started the patch) til 2 weeks ago (almost 5 months is the longest its been relatively quiet in years, had gotten to a point where it was just permanently a problem).

wondering if while trying to get a dx, could you try to manage it in some way like i am doing. just wondering? or maybe you have found a way to manage it (through diet or other).

though that's not necessarily all that you want. sometimes just being able to manage the symptoms can go a long way in the meantime. though for me sometimes that's more successful than others. and if one knows what one has, then one can treat it more effectively of course. but still, treating the symptoms is better than nothing. just a thought.