Thread: Anybody??? Ankylosing Spondylitis?

Sound like spongy ankles to me....and yes I have those too! New tentative diagnosis from my Rhuemitizm Doc. 50 years of what they said was JRA...but looks like they were wrong. Any one else out there??? Tell me about it, and the meds you have tried.

I have no idea what that is but it sure does sound made up! (not that it is, just fun medical speak)

I know...it sounds ridiculous! Like a comedy skit...how am I supposed to tell any body what I have with a straight face!!?? Why couldnt they have come up with a name that doesnt sound like an alien take over of the countryside?

I have no idea what it is, but I'm with you..."Johnson's Syndrome" or the like would be a much better name!

Here's the UK's National Health Service info:
Ankylosing-spondylitis - Introduction

Diagnosis, treatment and who does what is probably different in the US healthcare system.

I have had this for 25 years. One learns to live with it. For me winter is the time of year I hate as it flares up then. I generally control it with non-steroidal anti-inflammatory drugs. It is frustrating when in flare up stage, as my hips and lower spine lose flexibility and any hip movements cause pain (generally after a dance session). I also get pinching sensations in the right side of my ribcage. that hurts!..g.: Roll on summer and warmth (for me - as the problem decreases significantly)


Here is a bit of info on the disease:

Ankylosing spondylitis (AS) is a condition that mainly affects the spine. The joints of the neck, back and pelvis become inflamed, causing pain and stiffness. The sacroiliac joints are commonly affected in AS. These joints connect the base of your spine (sacrum) to your pelvis. Other joints, such as the hips and shoulders, can also be involved. AS can also affect other parts of the body, such as the eyes, skin, bowel and lungs. The symptoms of AS usually begin between the ages of 15 and 45 years.
What are the symptoms?

most common symptoms:
* pain and stiffness in the back, buttocks or neck
* symptoms worse after rest (for example, in the early morning) and relieved with exercise
* stiffness & pain after exercise (but don't stop exercising - practice caution)
* pain in tendons (which connect muscles to bones) and ligaments (which connect bones to each other), often felt as pain at the front of the chest, back of the heel or underneath the foot.

Types of treatment usually used:
physiotherapy exercises (such as hydrotherapy or exercises in water), to keep the spine flexible and improve posture, Accupuncture helps some people ( I find this useful when it gets out of control).

medicines, such as:
analgesics (pain relievers, such as paracetamol), non-steroidal anti-inflammatory drugs, corticosteroid medicines or injection, anti-rheumatic meds.

That was interestig, thanks. It didnt mention the treatment my doc has started me on, which is sulfazine ...but it interesting to see that UK goes right to injectables.

Ahhhh, I can see why this might be mistaken for RA! Makes me wonder if this is my issue instead of arthritis. Thanks for sharing!

I get the most relief with prednizone...I just love that drug, but my doc doesnt.

They say that 24% of Nordic heritage types carry the gene for it. In women it usually manifests in the large joints and the hands.

Perhaps the same suggested cause of pain in arthritic individuals can help relieve inflammation:

Avoiding nightshade vegetables...

"No foods have been definitively shown to cause or exacerbate arthritis in most individuals.

Not givin up my taters!! or my babaganoosh!!!! no...a thosand times no!

Been there, done the hospital bit, bought the t-shirt.

I had symptoms as early as 7th grade. Diagnosed in college after I couldn't get out of bed one day. Week or two in two hospitals, months of steroids.

Mostly all better now, 20+ years later. Steriods were to reduce the initial inflamation, my counts were almost off the scale. Was on Predisone for a while. Gained weight (only time in my life) and got bad back acne. After prednisone I was on Indomethicin (Indocin) for a loooooong time until I realized there were cheaper alternatives that didn't have the side effects. Side effects were "no alcohol" and extreme afternoon drowsiness. Lot's of people have stomach reactions, but my stomach is pretty strong and I had no problems.

I switched to generic Naprosyn, and have no problems. In theory I take 2/day. In reality I take it whenever I remember or I have a flareup. Generic naprosyn costs me less for a year+ supply than indocin would cost for a day.

Mine is based in my sacroiliac, like mentioned above. It's more common in men, but there are women in my family that have it. It's genetic, and there is a marker that can be tested for, though I don't recall what it is offhand.

I seem to have a mild case. It will never get better, but doesn't seem to get worse. It doesn't keep me from doing much, but I don't really want to run a marathon either. Lift & twist aggravates it. It is a deterioration of the joint lining, so the pain is something like two raw bones rubbing against each other. Think of a knife stuck into your thigh, and that's about right. In very extreme cases it can cause spinal curvature and force you to be hunched over. I'm not.

Hydrotherapy can help, when I was in the hospital I had hydro 3 or 4 times a day. Thus began my love of hot tubs. But you probably won't be able to write one off as a medical expense.

If people ask, I tell them "I have ankylosing spondylitis in my sacroiliac joints. That's the joint where your spine connects to your pelvis, not your hip joints though it makes walking painful sometimes. It's a form of arthritis and basically a deterioration of the linings between the vertebrate. It put me in the hospital for 2 weeks and I was on steriods and hydrotherapy but now it's controlled with cheap OTC meds. Compared to all the things that can go wrong with you, it's not too bad." I can rattle that off pretty quick, and it usually throws people for a loop and they don't ask anything else.

I cannot correlate flareups to any weather, month, altitude, food, temperature or *anything* other than physical activities. If I walk a lot, I'll feel it. If I run a lot, I'll feel it sooner. If I help someone move, I'll feel it. If I sit outside in a thunderstorm while eating french fries and contemplating Arizona, I'll get hit by lightning and die of cholesterol long before I'll feel any arthritis effects.

Feel free to ask if you have any questions.

-Jon

Originally Posted by anala

I get the most relief with prednizone...I just love that drug, but my doc doesnt.

For good reason. Prednisone is a steroid, and while it is great at reducing inflamation it does so at great cost. I wouldn't go back on it unless there were no alternatives and I could no longer walk.

Here's a couple more articles:
Ankylosing spondylitis - MayoClinic.com

[ame=http://en.wikipedia.org/wiki/Ankylosing_spondylitis]Ankylosing spondylitis - Wikipedia, the free encyclopedia[/ame]

The genetic marker is HLA-B27.

I eat lots of peppers/hot sauce. I have no correlation between that and flareups.

If I sit outside in a thunderstorm while eating french fries and contemplating Arizona, I'll get hit by lightning and die of cholesterol long before I'll feel any arthritis effects.

I love you!

From your profile:

I'm that guy you wish your troupe had hanging around to do all the stuff that needs to be done while not being some drooling groupie.

No, wait...I adore you!!!!

Aha!!! The better name than the alien run amok....

Bechterew syndrome

I've only seen severe cases in ICU so I really can't speak for the masses who have it.. hopefully dance and excersize will help you out in the long run :) HUGS!!

ps.. Mick Mars (of Motley Crew) has it. just a fun fact!

Originally Posted by Azhia

Perhaps the same suggested cause of pain in arthritic individuals can help relieve inflammation:

Avoiding nightshade vegetables...

Oh that's just evil, that list includes most of the main ingredients of salsa...

Not to mention the breakfast of champions...potatoes!

Originally Posted by anala

Not to mention the breakfast of champions...potatoes!

Breakfast, lunch, and dinner, baybee! I love me some potato soup! And fries, and hash browns, and tater tots (dipped in salsa!)...

Ok..I am so pathetic...a cashe of cold boiled potatoes in the fridge, eaten like apples - with salt and pepper.

Originally Posted by anala

Ok..I am so pathetic...a cashe of cold boiled potatoes in the fridge, eaten like apples - with salt and pepper.

You win!

I opened this up thinking it was a Greek performer! ..l;,

Sorry to see that it is something some of you are in pain from.

In honor of all the potato lovers, I pass on this recipe:

The Pioneer Woman Cooks - Ree Drummond

Fotia..thats funny!!!