can you remember..........

Kickas.org

Hi all,

I've been thinking since Brett's post mentioning mystery pains early on..........
My son is having a lot of pain in a couple of areas and of course, there seems to be a logical explanation of why it "could" be hurting. That phrase mystery pain reminded me that early on my pain didn't act the same as now.
In my very early 20's I just had sporadic burning of one shoulder. A stop me cold kind of fire that lasted about 30 seconds and then was gone.
Later some IBS problems, very occasional. The back problems and arthritic symptoms didn't show up til my SI joint was fused, the inflammation was getting bad and I had lost a good deal of flexibilty..

So I keep asking him, does it hurt more when you rest and he says no, but I'm remembering my AS symptoms weren't recognizable in the beginning.

Does anyone remember what the warning signs were? He's 24 and I'd like his blood tested but the gene test doesn't really tell you anything anyway. I don't have it. I'd like him not to have to wait for a diagnosis, but even more I'd like him not to have this at all.

Thanks.....................

peace,
linda

Linda,

Early warning signs are:

Onset of pain before the age of 35 years.
Association with early morning stiffness of the spine.
Improvement with movement.
Subtle/slow (aka "insidious") onset.
Duration of symptoms longer than three months before seeking medical attention.

My pain began in my SI and was unmistakable - there was something VERY wrong. A search on http://www.nih.gov should tell you a bit more about the diagnostic criteria.

Hope this helps

********
Kristin

Hi Linda,

My AS started out as constant knee pain when I was about 12 or 13, I had no other signs until the severe SI pain that started when I was 23 and it hasn't let up since (that's 6 years now).

I only just found this out. Apparently (according to my PT) the most common sign of AS in children is constant knee pain in the front when bending. Has he or did he have knee pain?

Hope this helps you.

Kiril

Don't forget to do your stretches!

This is very interesting. I have had a lot of trouble with my right knee. It was not the first sign, but one of the first. Very good addition, Kiril!!!

********
Kristin

Thanks for your input,Miss K!

I didn't have any of those symtoms til I was in my 40's......
We are all different, aren't we?

linda

Hi Kiril,
Interesting.....actually, he says he has knee pain on the sides of his knees and his calves are tight. He's thinking it's more muscular than skeletal, but he's complaining so much of different kinds of pain lately that my worrying motherly little ears perk up?

Thanks for your response...

peace,

linda

Yeap I guess that would have been my first sign. My Dad started taking me to the doctor when I was 13 for my knees. Our family doc treated me for a year or two for tendonitis and who knows what else. I finally stopped going since I thought all the meds were messing up my stomach. It wasn't the meds but a good old fashioned case of IBS or whatever that stuff is.

Tammy

Hey there Linda!

Early on for me it was the burning shoulder blade pain.....a couple of years before the dx. Then whammo......the classic si joint pain which was like nothing I had ever experienced before. Not anything like a pulled muscle in the back. As it has progressed I have noticed the mobility and having to move around to feel less stiff.

I pray that it is not the case with your son........but if he does have AS he will be fortunate to have a loving mother who knows firsthand about this disease. How long has he been experiencing symptoms?

Toodles!
Angie

I know this won't sound reassuring, but my early symptoms were not the typical AS symptoms. I had a more generalized mid-back pain that was constant, day and night. Slowly over the years it creept donw to my sacrum and pelvis, and is now going into my hips, sit bones and knees. The fatigue was a very slow progression.

I'll be praying for Brett

Daniel

Keep on keepin on Kicking some AS

Hey Linda,

I was in my early twenties when I really first knew something was wrong. I had severe pain in my legs and hips. I don't even remember it starting, but seemed as all at once I could hardly walk for the pain.

David

Tammy,

Isn't that strange? I never had knee problems, but we sure are all different, it seems.
Now my knees hurt but that's because OS has started!

linda

Hi Buggie!

They've just been for the last year or so. He's been having neck pain, but he just started working as a paralegal....hunching over papers all day. His legs were bothering him when he was working as a runner for a lawyers office last year and as a salesman at a local dept. store. Always blamed it on wearing dress shoes a lot, tight hamstrings, neckstrain. He says his knees make a lot of noise and his neck is kind of noisy too. I didn't think too much about it, til I read Brett's post last night. Before that he had a couple of jobs that were hard on the back too............

Might be nothing, but it just seems like he's complaining a lot for a 24 year old. Worry worry worry........I'm so good at that.

I think my meds or holiday stress is getting to me!!!
I spent an hour waiting for friends for lunch today at the WRONG RESTAURANT

linda

Hi Linda...

Great question...

My tailbone started burning at age 25...that went on for 12 years before my AS came to "light".....

I am going through the same thing with my son Danny....but like Tammy..his knees are painful and the doc recently said he as fluid on them....I too am worried..but ..he was tested for the gene and it was negative...but he is having lots of knee and low back pain..

I'm right in there with you in the worry department...oh and by the way....the burning shoulders?...I have always had that

Deb

and they slept snug in their beds

Dan,
You're right ....you are not reassuring, but knowledge is power. Besides, I'm probably worrying for nothing[or so I hope]

Thanks for your input, Happy Holidays!

linda

Hey David,
He's not showing severe anything so I hope it's a good sign.
AS creeped up on me too, but when I flared the rheumy said at my age I probably wouldn't see a remission.
Of course, every doctor says that ...........at my age thing

linda

Hi Linda,
My knees in my teens for me......my brother was his shoulder in his 20's.

Of course....docs had logical explainations for both of us at the time.

Who knew?

Cheers,
Steph

[\image]C:\WINDOWS\DESKTOP\My Briefcase\reindeer4_wreathswing_md_wht.gif[image]

Hey Deb!

I guess we can't help ourselves......worrying comes easy. So many of us are negative for the gene but are fused so how can you not?

Love Becca's picture by the way!!

linda

Throwing rocks in the ocean one day and felt great. Went down to the beach the next day and threw rocks in the ocean and fell down with the pain in the SI joint. I had about 3 weeks of pain one day and no pain the next and after the 3 weeks were up, it was pain, year after year.

Mom always told me something bad could happen if I kept on throwing rocks all the time. Moms are always right.

George

Breb Assyl

Oh, yeah, "at your age," etc. When AS first hit it was, "You're too young to have these kind of problems." Now it's,"At your age everyone has back problems." Or as a good friend of mine in an unthinking moment said after I had described my back problems to her (after I blew the disc last year) with the calcium deposits, narrowed disc space, stenosis, "Oh, yeah, that's what my mom has." Her mom is 85.

Cheryl

Sugar Magnolia wishes everyone a Merry Christmas. Woof!

Hi Steph,

In the drs defense, it must be hard to think of every ailment and diagnose, and we all have such different symptoms. How is your brother doing? Did yoou two ever get into one of those sibling studies?
I have 4 siblings that all have back problems [I never thought I did] and no AS. Too weird.

Can't wait to see your Christmas sig!

linda

Hi George,

Wow. that was fast. I got shoulder pains just one day, but they never stayed. A quick glimpse of pain to come.

I'll let you in on a secret George if you keep it to yourself................
Moms know very little, we're just good at acting like we know it all.

peace to you and your family for the holiday,
linda

Hi Cheryl,

Even my dentist said that to me!!! LOL AT your age, you shouldn't get any cavities, just keep those gums healthy! Abou the only place I don't hear that is at the vet!!! lol

I know what you mean about not getting any understanding It is just too hard to comprehend, I guess. After all, doesn't everybody have a little arthritis at 'their age'. Even in my arthritis water class, I heard someone say, :The pain was so bad, I just had to take a Celebrex" ONE CELEBREX!!!?????
Oh well, it's good to be unique.....I guess.

Have a wonderful and almost pain free holiday [you lucky little Christmas goose]

Also, happy holidays to Sugar............

Abbey still can't stop her bouncing head, but she still trying LOL

linda

I had bad knee pain when I was a child. My hands and jaw always hurt too. The Doc then said it was juvinile Arthritis, I can't remember a day without some kind of pain. When I was a teen and in my twenties my knees would swell to twice the size, I ran 7 or more miles a day so attributed it to poor streaching. After my son was born, 30's my hands and back seemed to hurt endlessly I figured it was the bartending(8 years by then) had a car acc. and knees just gave out had to have debri cleaned from right one. Foud more arthritis. by the time my last baby came I had back and knee pain daily.Still a mystry to MDs. In my forties I got a disentary type illness and was in hosp for a few weeks took almost a year to diagnose AS after that. I was so glad to have a diagnoses I cried. I was told It was in my head by most of the so called MD's I saw untill then. Just make sure your son gets every ache and pain checked out and don't let anyone discourage him, if they ingnore him find another doc, after all they work for us. Rose

Linda : I remember my first indication of something majorly wrong.I was19 and my left hip started hurting so bad I could not walk or even get comfortable lying down.I did have an unexplained several month run of diareaha at 17 which leads me to believe there is something to our leaky gut theory friends here at kickas.The family internest probed around a bit and then sent me to an orthopaedist who said it was inflammation of the hip joint synnovial lining.He gave me a sample of naproxen which was made by a company nearby that I eventually went to work for.Naproxen was useless.I gobbled Ascriptin which is aspirin with Maalox althrough my early 20's.I ran on the beach when I went to Cal Poly if the hip gave any indication it was going to start in on me.If I could force my self to run a mileor two it would help like magic.
I started getting low back pain at about 27 and my dad who was 67 simultaneusly were dx for AS by the same gp.After open heart surgery at 36 all hell broke loose.My neck,and right wrist in extension fused quicklyand within a year or two the lower back and left wrist also.My knees kept filling with fluid until I got into a line of work where I did not have to stand up all day.The situation is still miserable at 48.My right shoulder to neck area gets to the point on many afternoons that I shuffle my feet to avoid jiggling this area .My 7 year old gets the short end of the stick because I can't handle playing ball with him or even sitting with him wiggling while he trys to read to me. Going to see a neurosurgeon on 1/2/02 about this particular agravation .I guess I should be greatful I did not get iritis...yet.. Thanks God !Well at least for this site.Good post Linda!
Kev

A secret back to you. Fathers are the same way and we never admit it.

George

Breb Assyl

hi linda...

gee. i hope he gets better soon and doesn't come down with this disease.

from what i remember, i was in college with really bad si pain (i didnt' know it was called that) and i'm embarrassed to type this---- it hurt like the dickens to sit on the toilet and it hurt to walk. the pain hopped from one hip to another (depending on what day it was), so i never could really explain it to the college doctor why it hurt to walk, it just did. just that sometimes it hurt on the left side of my butt, then two days it hurt on the right side.

i was diagnosed with a slipped disc and had traction for several years. that didn't work at all.

don't remember any gi problems or eye problems early on. they popped up ten years later.

after complaining for several years of not getting better, this doctor gave me a bone scan. it confirmed inflammation in both si joints and the clinic sent me to a rheumatologist so i could finally get the right kinds of meds, etc.

good luck, linda. i hope all goes well with your son.

leslie

Constant back aches starting about age 27, which I blamed on totting a heavy toddler, then when I was 28 I was teaching yoga and froze in a position, my back went into spasms. Then IBS started about the same time. I didn't put all this together at the time, it came and went. Then when I was in my early 30s I began to run fevers and ached all over, and my left ankle kept swelling and my back always hurt. Was DXed with RA about a year after this, and AS just last year.

Cheryl

Sugar Magnolia wishes everyone a Merry Christmas. Woof!

Rose,
It is so weird....I must really have a mild case compared to a lot of people here. A late one that's for sure. I had no pain and never a back ache growing up. My parents were big on chiros and my siblings were always complaining about sore backs. They still have backaches, I have AS. Oh well...........
the one pain I did have when I was in high school was very weak ankles.....could have been a sign? who knows?

Hope you have a pain free holiday.......

[[[hugs]]]
linda

Hi Kev,

Isn't it amazing that you went through all that and never got diagnosed? Did you grow up in a small town with no rheumies.................never mind, I don't know how old you are but I'm guessing we never went to specialists in those days unless we were dying.

How amazing that your Dad was diagnosed at 67! What kind of pain was he in all those years? My second cousin had AS and was totally bent at the waist. I never saw him upright. He was old when I was young, so I never saw the progression.
Sign your Dad up, we'd love to meet him!

Talk to you soon,

Happy holidays!

linda

George,

I haven't told a soul about your chocolate stash and I won't breath a word about this either.

[[[hugs]]

linda

ps. I hear you're sending that cold Canadian air down here..........snow storm predicted for tonight. No more Christmas shopping in sweaters

leslie,

He doesn't seem to be like a lot of others here, so I hope I'm worrying for nothing. Are you feeling better? You sounded better last time we talked.
Hope your holiday is wonderful. It will certainly be warmer

Never had eye problems either except now they are VERY VERY VERY dry.

aloha, my friend,

linda

Cheryl,
Hindsight is 20/20. We could all diagnose now that we've been through it. Yoga huh? I was taking a class at the Y and really pulled something in my neck. That was miserable for a few weeks. I can stretch in the water and walk a treadmill ..... what a woose

Love your Christmas sigs!!!

Happy Holidays!!

[[[hugs]]]
linda

No, you're talking about the cold air where Ray and Jeanna and Dan and Steph and Mars and John and etc live. The west coast of BC is much more moderate. We are the California of Canada.

George

Breb Assyl

Linda,

Hindsight is 20/20. Early signs for me?? Low back pain. Had it for 3 years. Mom finally did take me to the dr. He said, sounds like arthritis, but she's only 15, so it can't be that, and besides everybody has low back pain, live with it, maybe get some more exercise. My mom thought anything the doctor said was gospel, so I lived with it, and snuck a few tylenol now and then. And if Mom saw me holding my back, she would say, you just need exercise. I worked hard, a small family farm, carried a lot of water and feed, could pluck a chicken like nobody's business, rode bicycle for miles when I had the chance. I don't think I was out of shape. I was so relieved when I didn't have to take PE anymore in school, some of the exercises made my back pain a lot worse. Stress brought on my first iritis attack, 5 years ago. Then after a bit of research, I found that everything pointed to AS. The low back pain, the morning stiffness. I'm not worried much about my children, but they will not go through what I did. I have a daughter who is complaining now and then of back pain, I'll probably take her to my PCP sometime. I don't want her insides cooked up by x-rays, besides nothing will be shown on an x-ray at this early stage. My x-rays at 40 yrs of age, didn't show a whole lot either. And as for waiting for a diagnosis, what can be done anyway? I have a diagnosis now, for what good it's done me. The doctors I've seen now haven't done any more for me than that idiot years ago. I think I have rambled long enough.

Hugs,

Cindy

Hi, Cindy,

I'm not sure I agree with you, I think today there is a lot more out there to control the damage than when we were young, one of my major problems is the amount of mechanical damage I have from years of inflammation, resulting in DDD, a ruptured disc last January and 2 more ready to let loose, and a very bad ankle that was ruined from the inflammation. The new DMARDs have performed very well for some people - - look at Lori's Eric, 12 years old and in remission, hopefully it will help prevent him having to have his hips replaced at an early age or fusing. Arava, as I've said, is working for me, and hopefully also will prevent further fusing and further damage to my ankle joint and my fingers. The major problem isn't what's out there, it's what's between the ears of the average rheumy, this thing calls for a lot more aggressive treatment and better pain relief than most rheumies are ready to spring for, and also calls for an open mind. Last but not least, in the early stages of AS diet may be very beneficial, the time to start modifying a diet plan is before a lot of damage is done, even the LSD if your kids aren't able or willing to be so strict as to cut out all starches altogether. The LSD is easy to follow and offers a lot of choices in foods, lean meats, fruits, veggies, sweet potatoes, etc. I have rice occasionally, I love rice, and yes, pizza every once in a while, but mostly try to stick to this diet. It's also a heart healthy diet, good for life.

Cheryl

Sugar Magnolia wishes everyone a Merry Christmas. Woof!

I don't think there are any answers for me. The NSAID's and DMARD's I have tried have been a total failure. I have been allergic to everything I've tried, if the side effects didn't get to me first. Finances don't allow me to try anything else. What is there besides bigger pain pills?? I have always ate a healthy diet and stayed active. Maybe that's what has held off the fusing for so long. Things just changed that's all. I had 40 good years, maybe I should just be thankful for that and quit hoping for a future. Don't think it's gonna happen for me. I just live from day to day, and if the pain will let me, I try to spend my energy on my kids. Hopefully that is enough. Yesterday, I got the bill from the Cleveland Clinic, and it looks like I just spent a lot of money I didn't have on nothing. All I'm interested in now is pain relief. I'm getting used to the wheelchair, and life will go on. I didn't like stacking hay bales anyway. Hate to sound so down, but I have to quit chasing butterfies, and get back to reality.

Hugs,

Cindy

Hey Linda -

I have, for as long as I can remember, had musculo-skeletal issues. At the time we just passed it off on the activity of the day (horseback riding, ethnic dancing), but now I wonder if there was something more to it way back then. In fact, I remember tremendous right hip pain in grade 7 (1986). Actually went to school in a wheelchair because the pain was so bad. Of course, my 12 year old mind doesnt recall if the explanation we were given at the time was satisfactory or not.

Speaking from more recent times. I have definitely had symptoms since 1996, but was diagnosed in 2000.

I dont know what to suggest for your son - but I do wonder for myself, what might the difference in outcome be if I has known at the very least 4 years before (and at the very most 14!!! years before). Would I have less drug resistance. Would something less toxic than MTX or prednisone cut through the pain for me? *sigh* Don't like playing the hindsight game very much, because I have a feeling of what my answer might be.

My best wishes for you and your son. Definitely not an easy decision for any Mom to have to think about.

Love,
Jeanna

Happy Holidays!

Mine started in my hips, and before I knew it my pelvic girdle and SI were fused together, this after my doc said I was slightly positive when HLA B27 was tested! I was sort of lucky, I was on comp for a groin injury when I was 26 and had an Asian therapist tell me to have that blood work done cuz she didn't like the way I walked. Bless her trained eye, and yes I did find another doc and now have a great med team. I've got AS cousin Crohns as well.....

Doug

wanna lift?

Hi, Doug, just wanted to say welcome to KickAS! Love your car

Cheryl

Sugar Magnolia wishes everyone a Merry Christmas. Woof!

Thanx Cheryl, luv your dog...looks like my younger guy Buster the boxer!

Doug

wanna lift?

That's Sugar Magnolia, she's a southern gal. The real Sugar is here in my office, by me feet as usual. She's a gorgeous girl, a borzoi hound. We have another huge black and white handsome fellow named Logan but he's shy and doesn't come to the forum much.

Cheryl

Sugar Magnolia wishes everyone a Merry Christmas. Woof!

No, I was thinking more of your kids, if they start developing symptoms maybe ealier intervention than what we got (what intervention? A pat on the head and a referral to a shrink if we were lucky

) To maybe prevent some of the damage caused by the years of inflammation.

Cheryl

Sugar Magnolia wishes everyone a Merry Christmas. Woof!