Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Pain confusion..

Just wondering if this happens to anyone else here. I find it nearly impossible to properly describe my pain! I just started going to a pain clinic here. During my consult, he asked the usual 1000 questions about my pain and history. I just find it extremely difficult to articulate this stuff to my docs. There are no straight forward answers here. For instance, he was asking where my worst pain is. I answered that my lower back. Then we went on to talk about my leg and thoracic pains. Sometimes that pain is way worse than the LBP. Last month I could hardly walk because of sciatica.

I finally said that my other pains, such as mid-back, knees, hips, varies and comes and goes. My lower back pain is there 24/7 to some degree everyday. One thing is that I think when one has chronic pain, we adapt our lifestyles around it and learn what not to do. Am i making any sense LOL.

I guess I just feel crazy when these docs are trying to ask me pointed questions, and my answers seem unclear.

I had my 1st round of ESI in my back. I have been pretty sore since I had it done Friday. Right before he did it, he said these dont do much for AS type pain. Yeah, now ya tell me!

Jamie

hi,
what's ESI?
Yes, this pain can be hard to describe because it migrates around a lot. When I am in a flare-up, I find the best way to desribe it is to say that I feel like I was thrown off the second story of a building. But maybe that's just me...
abilena

I was asked at work to describe my pain, and the only way I could get this over to colleges was to say . "Imagine your very very worst sprained ankle, when you've went right over on it and you want to be sick," well that’s how the joints in my spine feel 24/7. Most of my pain feels exceptionally deep seated like its right in the very ball joints of my hips and shoulders, and it's this "pure bone pain" that makes me vomit.
I had a diagrammatic chart sent to me by the hospital to grade the pain before the consult. What you were meant to do was put an X in the circle on that part of you body that hurts, well I thought that’s a bit simplistic, apart from the fact that it doesn't allow to differentiate the pain. So I graded it out of 10 as well, so shoulders and neck 10, hips and lower lumber(15haha) 10, knees and ankles 8, and wrists 5. Quite often my husband will ask if I want a shoulder and back rub, but the truth is that I can't bear anyone even touching the area as the surrounding tissue is so inflamed. I've noticed even brushing by objects I'm aware of the pain and that the whole area has become hyper-sensitized. Now if we could only design decent pain relief that would actually penetrate the bone, that would be fantastic.


LadyKitty

When I am down and, oh my soul, so weary
When troubles come and my heart burdened be
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

Hi,
You described the pain the way I did about a hundred times to the rhuemies. It's just hard to describe it. They will look at you like your crazy. Specially when there is no swelling in your xray or physical body. Mine didn't even show up in the blood work. I spend 15 years trying to describe the pain. Not until the growth in my spine started showing that they figure it was AS. Best of Luck.
Dan

It's funny, the medical profession is constantly asking us to quantify our pain ... which simply cannot be done as pain is so incredibly subjective. Probably that's why they asked you about a 1,000 questions about your pain at the clinic!

There's a very cool book called "Pain, the Fifth Vital Sign" by a woman named Marni Jackson. It has another title as well, but I can't remember what it is. Anyway, she's a journalist who decided to look at pain from the reality point of view, instead of the scientific. She has some very good viewpoints.

Hugs,

Kat



"A life lived in fear is a life half lived." - Strictly Ballroom

Hi
I had a referral to a pain clinic months and months ago, well i finally got an appointment (hang on i am still in shock!) for 18th January!!
I am not lookin forward to describin the pain etc either. My mind goes blank when i dont want it to! And like has been said u do learn to adapt and learn to work round the pain, therefore its not easy to describe what effect it has on your life sometimes (especially when my head goes!)
Thanks for the warnin bout the 1000 questions, think i have to get ready for it week before the appointment!
Hope it works out for u with pain clinic.
Take care
Heather

I tell my dr. all of the time that I can't describe my pain and I can't rate it. I think when you have had pain all of your life and it never lets up there is just no way to describe it. I know exactly what you mean.
Joyce

Hey Jamie,

I find at times my pain is hard to describe when the doctors ask me questions. Sometimes I just tell them after they ask the first question about my pain is I will say all of what I have to say about the pain and then you can ask me questions based on what I said. This approach seems to get me and the doctor on the same page and avoids the doctor looking at me like I am totally crazy when I try to answer each question they ask. Even then there is a few areas where the pains are hard to describe, like my shin where I get weird feeling that feels as it is inside the bone. I tell the doctors it feels as if something is crawling inside the bone at the mid-shin. I guess the saying is true there is somethings word can not describe.

Brent




Sandy