Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What does a flare feel like?

a flare of mine may include some combination of the following:

AM calf cramps
hot flashes / flushes
mouth sores
blepharitis
weird skin rashes
gastritis
constipation or diarrhea or the first followed by the second
increased tendonitis, take your pick on the joints involved
increased SI inflammation though the flector patch is helping with that
increased pain along either the cervical or thoracic spine
increased upper back / neck pain and spasms
sciatica
easier to tear a tendon or ligament during a flare, i've done a few doozies
increase with trouble sleeping

have you ever been tested for celiac disease (gluten intolerance)? sounds like you might also have this going on as well.

my SI joint was like that. for the first several years, it would be very cyclic and i could deal with it, but the last few years it became almost constant. we tried the SI belt, we tried the exercises, we tried being put back into alignment. the last two things helped, but not nearly enough. nsaids and cox2 inhibitors helped but i can't take them due to gastritis and edema. cortisone injections help a lot, but i don't want to be getting them every 6 months, so i started wearing a flector patch over my SI / lower spine 24/7 changing it every 12 hours, since april, so far so good, fingers crossed. my SI hasn't been this good for 10 years. don't know for how long this is a viable option, but for now i'm just going to see it as a gift, even if its a temporary gift.

i was tested for celiac several years ago. It was shortly after I had cut back on my carbs. It came back negative and I was not sure if it was correct, because i had cut down so much on my carbs. I wondered if this had ifluenced the results

Anyway, since then I havegenerally avoided wheat and cereal, but not fully because i have eaten ryvetta and some other products that have contained gluten. As I lower my starch intake, hopefully to zero, that will be all the gluten gone

I will mention this again at the hospital. But honestly I am ot so good at getting the treatment i need. The hospital are convinced that this Fibromyalgia is psychological. I get this where ever i go. I have seen loads of people over the years and they all have treated me badly. the only one that was kind and considerate was a very wise therapist. Ironically, she told me she did not believe fibromyalgia is psychological

Anyway, I will tell my doctor how I have flares and how they seem to originate in the sacriolic joint. I have told other doctors about this in the past but at the time I did not know i had physical damage there. Again it has always been assumed that this pain like the other pains i report to them , all come out of my head

Anyway, one thing i am certain of, always have been that this illness is physical. So if i can get some solid information from the tests i am asking for this will be a bonus to me. I have no desire at all to remain to long with the rhumatology department. Once I actually know what is wrong with me, I will do everything i can to deal with this via the alternative therapy route

These items that you mention in your last post. I have no idea what they are but I will look them up and see if they might be of help to me

One thing I do not understand is how this sacriolic joint is triggering the IBS, and confused thinking. Is it nerve impulses?

Love Joanne

Feels like ALL of what everyone else has said, including your own self! B...dy orrible... (Am in the middle of minor one at the moment. Sigh.) Get thee to a GOOD rheumy. Pronto. MRI Saggital STIR imaging - X-Rays won't cut it as they can't pick up the full extent of damage, especially in early stages. Otherwise, Nuclear Bone Scan - which highlites inflammation etc. But that means radiation exposure, so better MRI S.S. NOT standard MRI, OK?

HLA-B27 aint considered a real marker: some AS don't have and not all positive for marker have AS. Can only be of 'loose' interest!

Check out the *various protocols: European; BASDF; American. Put in search here, and, go to Spondy Association websites. Also, download Pain Map from KA, fill in with coloured sticks/markers; red, violet etc etc depending on severity of pain at pain points. Useful tool for rheumy - though don't be surprised IF never seen a pain map in their life!

Try an find a good rheumy who 'knows' AS... Don't want to be stuffed up/around by some clonker.

Welcome to KA family. Sorry to learn you 'know' the spondy beast...

Molly C (France)
Keeping on Keeping on (only way to cope, innit? HaHa.)

Have we any explanation of what a flare is? Is the the bacteria going rampant through our body? Has it got into the brain? Is it because we have eaten carbs and the immune system is attackig the body? Or is it something else?

Love Joanne

the only weak connection i ever found was hormonal, though now that i'm in menopause, don't know, maybe things are still cycling somehow?

I live with constant SI, hip joint, lumbar and cervical pain because I neglected my body for forty years until AS finally felled me. Emotional uproar, stressing over things, cold weather, wet weather, a long car ride or general aviation flight can all set me off.

As to the mechanisms of a flare? I have no idea.

I've heard some people on here say, and I wholeheartedly agree, that AS scares the poop out of ER doctors and GPs. Almost all of them are in the business to fix people; GP and ER folks want to do it quickly. They love a shot or a pill or a twist or a splint and they've fixed you, have a nice day...somewhere else. Next!

They can't fix us, they know it, and it frustrates and scares them. That more than anything else causes the notation of "psychogenic pain".

A competent rheumy or chronic pain doc is much more likely to listen and get it right.

Good luck. You're in the right place to find folks who understand.

John

One thing that I have found is to keep a journal of all your AS/IBS symptoms. How much pain are you in, where(the pain map works good for this), how long do you have morning stiffness. I would write down if I was awake in the middle of the night because of the pain. I just used my word processor on the computer. Take this journal to your Rheumy and GI docs. It was my journal that helped my Rheumy decide to put me on Humira and end my suffering.
Donna

Bruised ribs, tightness of chest, pressure along spine, pain down legs, intense pain in lower back. It is usually worst in the morning. During my bad flares I cannot go up and down stairs. During my worst flare ever I needed to use a wheelchair. In a nut shell: a lot more pain then usual.