Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How do you explain AS

Since getting the AS moniker, I've had a bit of a problem explaining it to friends and family.

I've read the medical sites which list the problems of AS and it seems like a gigantic white wash. No explanation of the crushing fatigue or stress and pain that can occur while just laying down/standing up. What is listed is so sterile and minor sounding until you get to the parts of a fused spine-which ironically causes less pain

I've tried to explain it as an autoimmune disease which affects the joints but then I get people thinking it's not arthritis. Or they use the fact that I can have "good" days to mean I don't have permanent damage like OA does.

It's good to have a diagnosis but it's still hard to explain it to those around me.

Pezami,
Here is some help. I give this out to family and friends:

http://www.spondylitis.org/about/complications.aspx
http://www.spondylitis.org/press/news/566-fatigue-and-as.aspx

When I have to give a quick explanation, I tell them it's a cousin of RA. Here's an article explaining similarities and differences.

http://rawarrior.com/ankylosing-spondylitis-rheumatoid-arthritis/

Although it's a few years old, there are some very good comments at the end of the article.

I've been dx'ed with undiff spondy, but this is what I tell people:

I have bone spurs in my neck that cause nerve compression and muscle spasms in my neck and upper back, but I have doctors that help manage that. I have inflammation in my SI joint that also causes muscle spasms in my lower back though the flector patches that I wear help make that better. Both of these make sitting a real challenge and the latter makes standing a challenge. I have inflammation in the entheses (where the tendons and ligaments attach to the bone) and when it was really bad, I tore a number of tendons and ligaments quite badly, but the low dose naltrexone has made that a lot better. I have gastritis and inflammation in my ileum (end of the small intestine), but its much better since going off of dairy and starting probiotics. I have psoriasis, but just a little bit. When I flare I also get dry eyes, mouth sores, and sometimes a weird "autoimmune rash" on my legs that is really itchy. And when I flare, all I want to do is sleep, kind of like when I'm sick with a head cold or the flu.

Then depending on who it is, I may elaborate.

I find telling the details of what I experience is the best way for me to explain MY inflammatory arthritis.

I don't focus on what the future could bring because I figure my present is enough to deal with.

And I don't focus on textbook definitions because I figure people mostly want to know what I experience when they ask me.

This is what I have found to be the easiest as well.. that AS is similar to RA, but more rare. An autoimmune disease in which body attacks itself.

Very different from OA (old age arthritis).

Tim

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

the spoon theory explains it sooo well

Wow Trudi, thank you so much for sharing the spoon theory!...I had heard some of the others and they are all helpful but I really like the visual image of having so many spoons!...I could see do this exercise for some of my close friends and family.

Thanks again.
Laurel

My husband even knows now about the Spoons story and he'll say something like, "but I can easily stop by the store because that way you can save spoons..." And other people will be like, HUH?? What is he talking about, spoons??
LOL

I just read the "spoon theory" and it's fantastic. thank you so much. It does explain the limitations that often occur without using medical terms.

My spoons seem to be flexibility, mobility, pain, and fatigue. So, I think people would be able to understand that instead of inflammation, fusion, enteritis, peripheral joint pain, etc.

i had to explain it to my boys the other day. gave em each spoons and talked them thru it. they have been not doing well with helping at all. this really gave them a visual of what my days are like and why some things really set me off (like things on the FLOOR!). some things just use up too many spoons and some days I'd really like to use my spoons on things I enjoy too, not just cleanin up after them!