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Posted By: Pezami How do you explain AS - 05/14/13 12:14 AM
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 smile

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.
Posted By: Pea Re: How do you explain AS - 05/14/13 01:49 AM
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
Posted By: Nonnie Re: How do you explain AS - 05/14/13 06:51 AM
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.
Posted By: Sue22 Re: How do you explain AS - 05/14/13 09:36 AM
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.
Posted By: Dotyisle Re: How do you explain AS - 05/14/13 08:07 PM
Originally Posted By: Nonnie
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.


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
Posted By: trudi Re: How do you explain AS - 05/14/13 11:43 PM
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

the spoon theory explains it sooo well
Posted By: Laurel64 Re: How do you explain AS - 05/15/13 12:20 AM
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
Posted By: naj Re: How do you explain AS - 05/15/13 12:30 AM
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
Posted By: Pezami Re: How do you explain AS - 05/15/13 12:49 AM
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.
Posted By: trudi Re: How do you explain AS - 05/15/13 01:15 AM
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!
Posted By: SUPNut Re: How do you explain AS - 05/15/13 07:51 AM
The spoon story is awesome, thank you so much for sharing Trudi!!
Posted By: Possi Re: How do you explain AS - 05/15/13 02:24 PM
I used the "Spoon Theory" years ago so my family could understand my Lupus fatigue. I had totally forgotten about it. Thanks for sharing.
Posted By: aussiegirl Re: How do you explain AS - 05/15/13 09:41 PM
The spoon theory is excellent. That is one of my favorites.
Unfortunately some of my family is a bit daft and they still couldn't get it so this is what I say to them just so they have a tiny bit of idea what AS is like.

I ask them if they have ever had the flu. All so far have said yes.
I then lead them with question to spark their memory of how bad they felt when they had the flu. I find it helps if people can relate it to their own experience at least in some small way.
So I say things like, remember how tired you were with the flu? When you felt so exhusted you didn't want to get out of bed, well that it what it is like every day with AS.
Do you remember how your whole body hurt? That deep bone ache and nothing you did made you feel better? Well that is what AS pain feels like every day.

Now remember when you had the flu and picture all the places you where hurting. You know with the flu it will hurt for a week or 2 and then you will get better.
Now picture those areas that hurt and imagine that everywhere that hurts means that permanent damage is being done. That is what happens when you have AS.

I know this is in no way a perfect explanation but it does help to give those that are a little slower than others some way of relating to just how bad it can feel to have AS
Posted By: Sue22 Re: How do you explain AS - 05/15/13 10:05 PM
Trish,

I love it! clap

I think that is a perfect way to explain how you feel to others. 1cup

Like you, I think its really important to find some common ground and then go from there; something that others can relate to.

Thanks for that! cheerleader
Posted By: rumble Re: How do you explain AS - 05/17/13 06:01 AM
What others have said is good. I go with the 'cousin to RA' explanation, pointing out that instead of the joint linings that RA typically affects, PsA tends to affect the tendon/ligament attachments on various bones and that it causes a lot of pain in places like heels, legs, spine, hands, feet (for me). Tell them that my various meds are to beat my immune system back enough that it won't attack me so violently, but that leaves me a little more susceptible to illness.

Tailor the explanation to the person's age and understanding....hopefully.
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