Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Just received news

will let others address the bigger questions but will address some of the smaller ones:

1. constipation: i have found that i need to eat 2-3 times more fiber than is recommended, and for me, needs to be in the form of fruits and veggies. but even then still can have some issues. for both constipation and diarrhea, have found psyllium to work wonders. it just kind of balances you out. firms up the soft stuff, loosens the hard stuff. and its non-addicting. my gastroenterologist is a big champion of the stuff, thinks everybody should use it. i buy the plain psyllium (konsyl brand; no sugars, no flavorings) and mix it with herbal tea and drink it down fast. or mix it with applesauce and chase it with a full cup of tea or water.

2. your arm: i've pulled my bicep tendon. i pull / tear / inflame a lot of tendons. don't know if its a AS, spodylitis, or other inflammatory arthritis thing. but that's what i get. wonder if that's what you have done?

3. upper back: i have active trigger points in my upper back. that's probably what makes my upper back hurt the most. they hurt all by themselves. they cause muscle spasms which hurt in a different way. now if only they knew why i have those issues? is it the arthritis in my thoracic spine and cervical spine / neck? is it something i did to my rhomboid area of my back 11 years ago? a lot of people here have upper back / thoracic / neck pain.

4. lower back, butt, leg pain. when my SI is inflamed, causes muscle spasms in my lower back and/or butt. depending on which part is inflamed, which muscles are spasming, can get sciatic nerve pain down leg.

5. dry eyes: could be a number of things. going to an eye doctor probably your best bet. i was concerned my eye discomfort was something serious, for me its a "simple" case of blepharitis, inflammation of the eye ducts, leads to dry eyes for me, which leads to itchiness, scratchiness, discomfort. but it could be more serious for you, but an eye doc could help.

6. low WBC? not sure. mine is always on the high side (borderline high). the docs think that could indicate an autoimmune disease. so not familiar with low WBC.

7. changing careers: that's a tough one for a lot of us. but maybe if they get you on the right meds, you'll feel better and won't have to consider this any more.

mostly though, just wanted to say welcome.

Hello Cryssfriend

So nice to meet you. I got diagnosed about the same age as you.
It's a relief to know what is causing you such extreme and scary symptoms but the diagnoses is enough to scare you witless again!

If you are thinking of going down the diet line I would strongly endorse the NSD. It is important to cut out all starch - but pasta is the worst offender known to man.

Hope you keep us posted (no pun intended) with what and how you are doing.

You know Tink, something you just wrote above made me wonder why Italians aren't the worst hit by far with AS. In fact, if we look at starchy foods and the countries they originated from or look at cultures whose diets includes tons of starch, we should see dramatic increases in AS cases.

From what I understand, the Irish and Polish and Italian populations do not show increased prevalence for AS. Isn't rice also considered starchy? Yet Asian countries aren't suffering from AS as this might suggest.

As I understand it, it is predominantly industrialized nations that note higher AS rates. Whether this is due to the quality of medical care in other countries or not doesn't really seem to rate high in my mind. Having once been an archaeologist, I have some understanding of human migration patterns and I can assure you that there is no such thing as a pure bloodline. Certain genetic markers may be more or less predominant in particular areas but the degree of intermarriage and many other forms of involuntary reproduction that have helped shape the human animal into our present form would mean that a culture with high intake of starchy foods would have to have a higher number of AS cases.

I don't think this pans out in reality though. Of course, these industrialized nations often have rather starchy foods available to them, the same is true of so many other cultures.

My guess is that has more to do with something particular to northern and western industrialized nations.

I believe in the "unknown elemental factor" and I would also add physical trauma to that list of triggers. I am certainly no expert and lack the experience and education to go around telling people they are right or wrong about just about anything. I most certainly would never take my medical advice from someone who declared themself an expert.

Now I want to look at global responses to AS and compare that data to cultural diets. I'll bet dollars to donuts that it doesn't pan out.

Chris

Comment: 'Cultural diets and AS - compare data'.

Go right along with you there Chris. Have often wondered on that very score. Italians and pasta being a numero uno specific!

You know, think that would make a very interesting world-wide study. Would take quite a bit of setting up, but with a well drawn up data base...hmmmmm. Anyone?

Hey Cryssfriend! I have found that a firm mattress works for me especially if you add an eggshell pad to it. A soft mattress is bad news! I like to keep a pillow under my knees. I also fare much better on my back. It keeps the spine straight. I would also recommend sleeping without a pillow on your back to keep your posture throughout the night. AS can be tough at night since you stiffen up without moving. I would watch out for iritis. I would recommend getting regular eye exams from an opthalmologist as well. Iritis causes red and painful eyes and makes them very sensitive to light. If you notice this it is an emergency and I would get to an eye doctor or ER immediately.

Craig

Hi Chris

That's a very interesting point. I may need to consult the oracle of all knowledge on this one....

A quick surf on the Net revealed to me that no official studies have been done on percentage of population of Italy with AS???

I would be inclined to agree with you (I only typed this earlier actually on the UK AS patients urgently needed post) - I think it is a combination of elements that triggers AS and diet could be just one element to this big mystery of a disease.

My reference to pasta being the worst starch for AS pain is from Prof. Ebringer's research. I don't think anyones research of AS cases by population is extensive enough to prove any theories of diet one way or another. I can only say that my pain is directly linked to what I eat - but it can be a combination of factors that trigger a flare up. Including as you say - physical trauma.

This is a very interesting topic to discuss isn't it?

Tink - Don't think there a 'real' percentage has been done. NASS says (if I read it right) that 2% of Brit population have AS. That would make many *thousands of Spondies! (Will go back and verify that, but seems high?)

But 'what' a terrific research that would be. Would need *exact figures, not estimations.

Would have to break it down into SA; SpA; PsA; etc etc. From 'actual DX. That would be one section, then, another section, under those headings, but suspect? Hmmmmmm. Dunno on that one quite. But a huge concerted world-widfe effort. OK. Dream on <LOL>

Take care you guys -

I certainly think so Tink. A discussion of this sort is one of the things that make this place unique and so important. Who else could I talk to about such things? My doctor? Even if he was willing to spend the time, I certainly couldn't afford it...lol

Also, I find your approach to looking at diet as one part of a bigger problem to be refreshing. Diet is so important and there are many other diseases clearly affected by the foods we eat, or don't.

Take care,

Chris

I would love to see that world-wide study done

I wouldn't expect to find a big hot-spot of AS in Italy however...

I have read, and had an Italian-american friend agree, that other parts of the world tend to overestimate the amount of pasta that Italians actually eat.

A typical Southern Italy meal would have a little pasta with lots of vegetables and meat, as opposed to the American idea of Italian food which is the other way around (lots of pasta with a little other stuff mixed in). Supposedly Northern Italy food features other stuff like polenta more than pasta.

Sigh... need to stop talking about Itallian food. I miss lasagne!!

good to see this here. was going to make a similar statement. think it may be a western hemisphere bias thinking that italian food = pasta. i'm always disappointed going to most italian restaurants in the united states, so little variety, mostly "pasta", as compared to what i'm more familiar with. my stepfather is sicilian and we grew up eating lots of bean dishes, lots of seafood dishes, all kinds of vegetables, and yes, some pasta. and from watching the food network and having a subscription to a cooking magazine out of italy, feel like my experience growing up may not be atypical. i've too had a number of surprises over the last few years in regards to italian cooking, kind of assumed that what i grew up with was "typical", but was surprised how big "grilled red meat" was in the tuscany region or just how much variety is in "the silver spoon" (the #1 cookbook in italy) that i got as a christmas present last year. its always interesting to me our impressions, always curious what gives us these impressions, and wonder how much truth there is in these impressions? suspect its our own experiences that contribute to our impressions, accurate or not.