Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group thoughts from 4am - I've had AS a Long time

As I was laying in bed at 4something am last night, awake from pain again i got to thinking about when I started having trouble with sleeping. It was my teens. I have had a pillow for between my knees since i can remember, and have been accused of being the Princess & the Pea most of my life.

and My eyes. so sensitive to light, I never thought anything of it but its really quite rediculous that no one else needs to wear sunglasses and a wide brim hat INSIDE the bldg.

and my stamina, i always felt maybe i was lazy that i got tired of house cleaning and had to sit to recoup.

and i suddenly started feeling better about myself. Because i had been fighting this diesease for along time withtout knowing it. and thats quite something.

Anyone else ever stop to think how long they have had symptoms even before they started asking for help from DRs?

Yep. Ditto. We arena tough lot.

Yep, I would have never guessed I had something like AS, I just thought that everyone felt the same. It was much later that I started asking my Dr. about it.

Yes, ditto.
So many things (well, all of it really) make sense now.

Lower back pain as a teen. Periods of horribly stiff neck since 20s, Eyes more sensitive to light since 30s, sports stamina dwindling, low energy, lots of very bad colds, chest infections, cold sores flaring like never before.

10 months on an adjusted diet = no colds, cold sores, energy level steadily improving, less brain fog, and most of all, much less back pain.

I too had the same thoughts last days. I had morning sore since 15, always had the feeling that I didn't sleep enough, that I was lazy etc. Thinking now that the monster started at 15 , after a knee episode, and i was diagnosed at 23 it's some time fighting an unequal battle. If I had know from the start i would take a lot of different choices. But i think that this was my fate and most importantly is to take the good choices from now on.
Take care.
Manny

I remember NOT feeling stiff in the mornings and having NO PAIN when I was a teenager until the Monster starting biting me when I was 19 yo...I was diagnosed as having inflammatory back pain (Scheuermann's Disease) and reassured that it would "burn itself out" by 25 yo at the latest. Of course it never did, but stayed with me and GREW... I just "put up and shut up" and as a result, have had suboptimal management for an awfully l-o-n-g time!

I have often thought over the years (like when I was say 25 yo, then 30 yo, then 35 yo...)that it's amazing to think that when I look at say a 50 yo walking along the street: they may have woken with NO stiffness and may be walking along with NO aches and pains.... never thought what I was feeling was normal, just amazed that others twice my age felt half my age! LOL

Now I have less pain and stiffness (and pain meds) than I have had for a LONG time - thanks to the NSD - but to counter that I have 30 years of mechanical damage that gets in the way - so I'm crumbling slowly, but the force that is driving it - the INFLAMMATION - is considerably less these days - for THAT I am thankful...

when i think back, i was playing tennis through grad school, even while doing post docs in my late 20s and early 30s. now the thoughts of playing tennis makes me shudder as to what it would do to the tendons in my wrists, shoulders, etc. my wrists hurt when i do normal every day activities. tore a ligament in my wrist and tore my rotator cuff doing very trivial things. for me, the tendon problems came on rather suddenly when i hit 35.

similarly, the SI joint inflammation started very suddenly oct 2000. i was 37 at the time. the first flare was as dramatic as my most recent. i didn't know what had hit me. thankfully i was on the way to the PTs office to be treated for my upper back neck issues that had started 2 years prior, and the PT knew instantly what it was. thank goodness i had her from the start of this! no way could i have gone it alone!

on the other hand, i do remember the searing pain in my neck when working for a long time on the computer, back in grad school even. not sure about my early 20s as an undergrad? thought that was just a normal side effect to long hours doing desk work. so maybe that was an early sign? now that i have correct posture, i don't get that searing pain anymore, not since i started having real problems and became obsessed with good posture in good chairs.

It is very hard for me to remember a time that I would wake without pain. I first had tendon and joint issue at age 10.
From then on it was one injury after another. Yet myself and my parents and doctors put this down to working on the farm and being very active with sport. It wasn't untill my late teens to early 20's when the worst of my back problems began that I stopped to think something more may be going on.
Even then at age 29 I was shocked but at the same time a little relieved to find I had AS.

AS explained all the problems I had as a child and the weeks spent in hospital every year with reactive croup.
I now say to people that although winning the lottery would be great, I would give it all up for just one day with no pain.

A lot of the time I try NOT to think about symptoms I had as a kid. I have told doctors that I had back pain from at least the age of 16, but really I think it was long before that. Discomfort sleeping (used to have to lie on my back with knees up) from probably age 10 or earlier. Knees that used to stiffen up from probably age 8. Shoulder problems from about age 11 or 12 (difficulty holding my violin up). Light sensitive eyes from probably age 11 or 12. Cramping ankle pain (tendon) again from early teens. Sore ribs from teenage years. Buttock pain (pelvic bones) and difficulty sitting on hard seats from at least age 12. My mum got her arthriticky stuff happening by the time she was 13 and was really lucky to have a doc who recognised that it wasn't just "growing pains". I managed to put up with my stuff thinking it was just what you lived with (having come from a family or arthritis sufferers) and didn't bother going to doctors with. Now I'm not prepared to put up with it any longer (and especially as it has disabled me quite severely in the last 5 years) but its hard to get taken seriously at 55 with no documented history of previous problems.

I was fairly normal as a kid but could never run as fast or as long as the other kids could. Could never get up water skiing. Kind of injured easily in Cheerleading.

Then I was just normal in my early twenties. Running non stop going to college and work, then full time work, then taking care of my babies and serving in my church and community and running my own small business. Then the monster hit. It took a couple of years for people to stop calling me......"could you babysit my kids.....chair a committee.....help here.....help there...."

It was a huge blow to my ego to learn to say 'NO' because that is who I defined myself as, "a helper." Now I'm in a position where people have to help me all day long. I suppose a lesson I've learned is to be more humble. I used to think I could do it all. Many people have commented that I actually made them feel bad about themselves because they felt like they couldn't keep up. I never would have dreamed that. Humility is a good thing. "something" good has to come out of this, right?