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Joined: Mar 2013
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Spring Offline OP
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Hi all,

I have flareups a few times a year that makes it extremely uncomfortable to sleep (u know the kind where you wake up at 4am and toss and turn in agony for days until it passes). by chance, i found this mat (spoonk is the biggest brand, but there's lots out there)-it's the size of a doormat, and has thousands of "rosette needles" made out of plastic. And you lie on top of it for like 5/10/15 mins whatever you can stand without a shirt on. It's supposed to mimic acupuncture. I've had AS pretty bad (as in pain pretty much every day of the year minus a few days) This is the ONLY thing besides vicodin that has helped me get enough relief to fall asleep again! I did a quick search and didn't find it mentioned on this site.

I also get a type of ab/side pain that i can't find anything written on. please share if you have this pain as well. it's like a crushing pain, super sore, and I dread it even more than the SI/back/sternum/rib pain that plagues me most of the time. It's SO bad, the WORST pain I've ever felt. It gets worse if I sit or lie down too much. Does anyone know what this is? I even thought about MS hug-but it doesn't quite add up, and i don't think i have MS.

Anyway, this mat gives me the biggest relief from that without medication. I lie on it face down instead of face up for back pain, just so it presses on my abs below the ribs. just wanted to throw that out there in case anyone experiences the same thing

*before someone rips me out just because i mention a thing you can purchase and i don't post a ton, and accusing me of spamming and advertising-please think about your actions. If you jump on us "newbies" too quickly and harshly, we may never post again and the whole community suffers for lack of involvement. We all lose out. i'm more of a lurker/reader, esp when i have flare ups-I come here to learn. As of now, i have more to learn and not much to share about my successes-YET, since I have only dealt with this for a few years and am still trial-and-error-ing. I have read a lot of posts with a TON of negativity and bashing, and I hesitate to post something I have found to be almost as helpful as vicodin in relieving the pain. However, I will take the risk because for all the desperate AS-peeps out on this site, something that actually works for one person might help some others. and when I was desperate, anything that gave me hope was welcome. end rant.*

Joined: Jul 2001
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Hi Spring.

1. Have you had a doctor find exactly where the pain is happening?
2. Could the pain be more a gastric pain?
3. Does the pain come in waves?
4. How long is each pain "session"?
5. Check out Costochondritis.

I ask about the gastric angle because I had 10/10 pains in the abdomen so I can sort of relate as the pain looks like it is in the neighbourhood.


Timo
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Hi Timo,

Thanks for the response.

1) 9/10 times i go to ANY dr, they have NO idea what's going on. I can't remember, but i'm pretty sure i brought it up to the rheuma. of course he said he didn't know.
It's ridiculous how little they can tell me about pain. Even with my classic AS pain-which looking back was beyond obvious that it was AS...the rheumatologist who ran his OWN clinic with lots of other drs had no idea...(c'mon, classic AS pain patterns, im HLA B27 pos, had a flare up of uveitis in college, i was 27 at the time, etc etc), he was like: it might be seronegative spondyloarthropathy, but I don't know which one. you should keep coming in to get checkups. He gave me steroids that did next to nothing and put me on NSAIDS and hydrocodone, typical rheumy stuff. I haven't been back.
2) I never thought it was gastric, simply because it's in a different place, it's lower and doesn't feel like my stomach at all, I'm almost certain it's coming from my ab muscles. it's hard to describe, but when i had gastric erosion in the past, it was not anywhere near this...it also feels closer to my skin, like right under it. it feels like muscle spasms. it feels almost like charley horses, but in your abs.
3) The pain comes and goes, maybe a 4-5 flareups a year. and when I have a flareup, it gets better after I get up and move around, takes a couple of hrs before it's bearable and I can kinda feel like myself again (usually by the late afternoon).
4) It's hard to say how long it lasts...usually pretty strong pain constantly in the morning during a flareup (with minimal fluctuations in level of pain), and subsides later. Usually to return again the next day. The more I sit or lie down, the worse it gets. That's a HUGE clue, I think...
5) i've read about costochondritis, but without someone really describing what it feels like, i can't compare it to my own issue...have u experienced that before?

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hope your still around and the pain in the side is gone. I get those pains. For a few years I thought it was caused by clips left in me from my gall bladder surgery, but it isn't. I don't know what it is, but just wanted to mention that YES I get those then worry it's my heart and then I think if it were my heart, I'd be dead by now. Have a good day!


"those who were seen dancing were thought to be insane by those who could not hear the music"
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hoping you see more positive than negative posts here smile

can you place a link for that matt, it sounds interesting, and i'm always looking for interesting ideas. some of my most pain relieving things are pretty cheap (like ice packs and my real ease neck and shoulder relaxer).

Can I ask you about that pain?

If its further down, it could be in your intestines? They found my stepfather's crohns on X-ray by him pointing to the location of the pain while they did they X-rays. he had a mass the size of a grapefruit when they found it, all scar tissue from the crohns.

Or if its more superficial, especially if your matt helps, maybe its a trigger point. I have a lot of trigger points and its amazing how much pain can come from a simple trigger point. I had PT who worked on them. I now have a chiro who works on them. and i have an interventionalist who injects the worst ones in my upper back and shoulder area. I'm thinking of seeing if he'll inject the one in the right buttocks.

Just thinking about trigger points because of how you say the matt helps. Triggerpoint therapy is a thing that helps a lot of people.

is it really completely below the ribs? or is it in between the lowest ribs? I get pain in those intercostal muscles sometimes and boy does that hurt.

Maybe if doctors have been unable to figure it out, maybe a manual physical therapist could help you figure it out. a manual PT helped me a lot in the beginning before i could find doctors who could help.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jul 2001
Posts: 3,334
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Posts: 3,334
I have had rib pain and it happens in spurts as the inflammation gets going. The pains were right at the edges of my ribs.
As to my stomach, I had to have some parts glued and another part banded to stop the bleeding but things seem pretty good now.


Timo

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