Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group please help? question about arthritis AS pain!

All right, Mellie, girl power in its way.

First off, like many of us my pain can be different (spots, intensities) from one day to the next. That said:

Lower back/SI: Dull burn constant - say, a 3 on the Rictor scale. Sciatic nerve sometimes gets into it. Have you ever had to have fluid removed from a joint? I've only had to have this done once, on my left knee the night I was hit by the car. I thought I was either going to throw up or go berserk from the pain of the needle going in and the drag on it as he sucked the fluid up into the needle almost sent me right over the edge. Well, that's pretty constant in my butt (usually the right, as the left SI is already fused) during flares. Can't sit, walk, or lie down with any degree of comfort. Right now, it kind of feels like my right sit bone is sitting on a thick/numb spot, which doesn't bode well.

Thoracics: always a low level burn, but when it flares, it becomes an intense burn, deep down inside my spine. It radiates out from just in behind my sternum (just to give a location on the spine, not to say it hurts in the sternum). When it gets bad, it evolves into a hot knife (and not the fun kind). It goes under my shoulderblades and a lump of pain forms over which my shoulderblade must run every time I move. Sneezing and coughing (not to mention laughing and just plain breathing) become torturous, because every one feels like a sword running through me.

Neck - Occipital/Atlas area: This is also constant. A dull roar in behind my left ear that has a tendency to make me feel like there is pressure on my left eye. It radiates up from my shoulder, where it joins the neck. On a bad day, it feels like my head is going to split open and, also, have you ever eaten a really goopy, wonderful chocolate cake and had that tickly feeling in the back of your throat? I always think of it as my tonsils itching (although they were removed when I was 2). Anyway, on a really bad day, I get that feeling throughout the bad area in my neck/head, only more on the pain side than on the tickly/sweet. My mother (and now I) would describe it as 'exquisite'. Oddly, that word describes it extremely well.

Hope that helps. I'm sure there's alot more I could add to this, but I really don't want to focus on it that much right now. Even with Remicade, trying to evaluate the pain causes it to escalate because I'm focussed on it.

Many hugs,

HI Mellie! I have had AS diagnosis for 12 years and have absolutely no activity in my back except for slight separation in my sacroiliac. I have always been afflicted in my large joints i.e. knees, elbows, ankles etc. I always know a flair is around the corner when my jaw aches. Since taking Enbrel, my pain and swelling have subsided, but i used to always describe that my knees felt like somebody had cut them open with a hatchet and poured battery acid into them--try that description on someone, their expression will be priceless. I noticed above you had mentioned a muscle relaxant---have you ever tried Soma? I call it Coma as I can only take it at night or when I want to make a complete [**BLEEP**] out of myself in public during the day. But when taken at night it really does ease the muscular pain. Warmest, Teresa

Hey, my pain is still existant but not as bad as it used to be, because I take meds, low starch diet, and am active.
My pain has always been very sharp. Mostly sacroiliac joints. I've had doctors, on no pain days push on my sacro joints and the result was a month in bed, every time. Sometimes I get so inflamed in my sacro joints that it presses on nerves that go to my calf. My calf is sometimes numb like its asleep. If I sit on ice on my sacro joint my calf stops aching. I also found that ice to my lower back makes my sacroiliac joints hurt less. 20 minutes on 20 minutes off. Right now my biggest problem is my eyes.
They feel like hard boiled eggs. Still gotta make an appointment tomorrow. My pain has always been sharp at the end of a flare I get a tired dull ache feeling for a few days..That part I can be sleep off usually. Hope this helps.

My two cents worth and at with what is happening with the Americn currency, that's not much. My facial pain and spasms was first diagnosed as Trimengal Neuralgia and as it progressed was changed to a dystonia. It affected one eye and then the other (BEB) and then my lower face (Meige) and my nose (bunny twitches for lack of the real name probably part of Meige), throat and voice problems diagnosed here and at Mayo as Dysphonia a type of Dystonia and now have been told that my extremely painful twisted back is very possibly the exacerbation of the Dystonia into generalized Dystonia. Very painful. I am going to PT and getting some stuff straightened out. Also my ribs are fused and I can barely get any air in my lungs. My air is mainly going in my tummy. They told me last week that I probably have air in my lungs that has been there so long and so stale that you couldn't see through it.

Just a little more input on possibilities of pain that can affect any part of the body and yes, I am positive B-27 and had an AS diagnosis for 30+ years along with JRA for 50 years and Lupus for 30 years and Osteoarthritis and any thing else that is auto-immune (which Osteo isn't).

This cn be totally ignored. May be totally irrelevant but just wanted to mention other things that "can be" and that you really don't want any more than you want this other stuff.

Blessings.
Possi

Hi....
Have been hoping you are having better days.

OK, post about mean people? On "Our" forum? Guide me to it. I want to see if I am there.

Hope you and yours are doing ok.
Have missed talking with you.

Blessings.
Possi