Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New and Need Help with Diagnosis

A doctor will usually measure you chest expansion when you inhale, also a sobe test, that measures your lower back flexibility. A lot of my upper back and ribs seem to come from my rhomboid muscles that are located deep within the body between the shoulder blades attach to the spine. Sometimes misdiagnosed as plurasy.
The reason I was mentioning trauma, or how your body interperates trauma. There usually appears to me that there is somthing that links up. just my 2 cents... When I was a baby I was blue, nearly died of double lung pneumonia.
Keep talking this out, you definitely have friends here that can help you at least make sense of what you are feeling.

Heading to the doc tomorrow and am bringing your notes. I'm not the type to hold back, so am just gonna put it out there as a possibility. I've been suffering for too long to wait. THANK YOU!

Hi and welcome to KA.

I hope your appointment goes well. As to your confusion over the questions, it's understandable.

Pain at night generally means while sleeping. However, it could also be asking about how you feel after a day of work.

At rest generally means while sitting or lying down. So, if you had a desk job or were watching a movie at the cinema and had to sit for a few hours at a time, how would you feel after a while of this. For example, many of us need to sit in a seat beside the aisle at the cinema so that we can stand up and relieve the pain in our lower backs.

Movement can be any kind of movement, not just exercise. You mentioned that when you first wake up, you're really stiff and there's pain until about an hour goes by, yes? It eases because you're moving around. If you're sitting in a chair for a long time, or in a car for a long time, you might be stiff and in pain when you stand up, but if you can walk a little, it eases.

One of the things that is characteristic of AS (rather than other types of arthritis) is that we generally feel better after exercise or walking or just moving our bodies a bit. Lying down and sitting for any length of time can be very painful for us.

Please, when you discuss this with the specialist, explain the autism aspect and how you might need help filling in questinaires to ensure you are understanding them correctly. The questions are vague because there is no actual right answer. We all experience this in our own ways and what is correct for one person won't be the same for another. But that does make it a little confusing if your brain sees things and understands things slightly differently.

I hope that helps.

Warm hugs,

The only people I know with SI joint problems not due to trauma are new mothers and people with spondyloarthropathies. I had a rheumatologist who tried to convince me that my SI joint degeneration was osteoarthritis, but I have that in my knees and know the difference.

The rib thing still sounds like spondy. I do get the front rib pain some, but for me, its more in the back.

For sure, laying or sitting too long bothers my SI joint and neck, but when I'm in a flare, then using that body part hurts too. When my SI joint is really inflamed, I can't walk, I can't sit, I can't do anything. So the question about does exercise help is not a straightforward one for me either. Yes, in general, exercise helps me, but only when I'm not in a flare. Then not moving is better for me.

I'm not incredibly stiff when I wake in the morning. If I wiggle my fingers and toes and stretch, that's about all it takes. But I definitely have an inflammatory arthritis.

Sausage digits, that's basically swelling of the joints. I've never had that, ever. My joints do fill a bit with fluid: my PTs, chiro, physiastrists could all feel it, and taught me what it feels like. But nothing visible. But my SI joint, ribs are "lose" when they are fluid filled, and can become a bit misaligned / subluxation.

I tore lots of tendons and ligaments over the years…..low dose naltrexone put a stop to that.

Its really putting everything together and just answering the questions honestly. The answers don't have to be yes or no, black or white.

Recently my rheumy asked me if my SI joint or neck was worse and my reply was, "it depends on which one is worse at that time." I refused to pick one because I really couldn't. The day I saw him, my neck was flaring big time. But he knows at others times that my SI joint flares bad enough I can't walk. So we don't always have to answer the question, the way we think they want us to answer the question. Just be honest. Just tell your story.

Since it took me 12 years to get diagnosed and thus treated, I tried lots of other things along the way. Now I'm on Humira and its the best thing so far. But it was a long trip to get here.

Initially I figured I just had a lot of bad luck with my body. Now I know better.

Thanks for all the kind input.

I presented my notes to the doc with my, thus far, two theories behind this particular pain. She is not used to having patients like me and instead of dismissing me (like the other have,) she has been doing homework between our visits. She seemed suddenly well-educated on the role of diet and health and when I said I couldn't remember the name of the bug in the LI of AS folks, she knew it. Little things, but considering their actual training, a big thing.

So, she agreed that we should start looking at inflammatory markers. She ordered some new blood tests (don't know which ones they are yet; I get stressed when there and my brain stops working,) and x-rays. This time, the x-rays were specific to my rib cage pain and SI joint problems.

Time will tell.

The little I have seen of this forum, I already see that it is a real place for real people. Kudos. I forget, though, are our comments public? I run a support group for adults on the spectrum, but I keep it private, so I am used to just venting without thinking.

PS. She also spared me the indignity of vague questions and, instead, read what I wrote. The only question she asked was for me to tell the story of my SI joint tears.

sounds like a good doctor.

inflammatory blood markers. if they come back positive, that is useful. But if they come back negative or as mine do, borderline, that doesn't necessarily mean anything. I've never gone for blood work in a terrible flare, so maybe that's why my blood markers didn't show much. But did go in a moderate flare and just borderline blood markers then. the spondys often don't show up in the blood, "seronegative". One theory I read that made sense, the entheses, where much of our inflammation is, is an avascular structure, meaning the blood doesn't flow there, thus the inflammatory markers don't show up in the blood.

yes, our comments are public, except in some of the more hidden parts of the forum. look at the forum logged out to see what you can still see, that will tell you what the public can see.

but too, remember, nothing in print is ever truly private.

Bloodwork came back. On a side note, and because Sue mentioned it, I was having a particularly low-pain day when they took my blood. The only levels that were elevated was white blood cell count. But this is interesting: My vitamin D levels were "undetectable." I'll be going on prescription Vitamin D for the next two weeks. I saw that someone in this forum had low D levels, too. Crossing my fingers.

X-rays came out fine. Which is good, but it makes me wonder if my kidneys/adrenals are behind the back pain ... which is, oddly, what I suspected at the beginning. So, we still don't know.

If I could afford an MD who went to The Functional Medicine Academy ... I would have found out last year about my vitamin D levels. They test for nutrition imbalances, first. Ah well. Such is life.

At the moment, my low back pain is giving me a break, but yowza not the left rib cage. I'm not on any pain meds as I don't like them, but I might have to resort to the OTC arthritis pain formula today.

Vitamin D is worth investigating... I recall 2 individuals here that began increasing due to very low levels and saw improvement over all the years I have been posting.

Best to you,

Tim

Thanks, Tim.

I forgot to mention: The only reason my vitamin D levels were even tested is because I told the doc about what a person in this forum had discovered about themselves

My white blood cell counts were always on the high side of normal or just over the limit of normal.

My rheumy says that's pretty normal for someone with autoimmune or auto inflammatory disease.

I used to get the comment from doctors, "were you sick when you got your blood work done?" and always the answer was "no." then they'd say, "well you must have some low level infection that your body is trying to fend off." but now I see, that should have been a clue for them, but it wasn't. And I didn't realize it was until more recently.

If they measured the different kinds of white blood cells, see if this info makes sense:

http://www.nlm.nih.gov/medlineplus/ency/article/003657.htm