Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group My Symptoms - Can Anyone Offer Advice?

I'm new here so please go easy with me. I just want a 2nd opinion from you guys as I spent 3 to 4 hours browsing your posts yesterday and I think this is an excellent group of people to get a "2nd opinion" from.

I've had a bad back for about 2 months now. Previous history? Back's been fine apart from the odd obvious muscle-pull (once or twice in my life, 39 years old now) that is recovered-from in 2 to 3 days.

Symptoms: started off as a dull ache in what I would describe as my "tail" - not right at the end, but in the mornings if I clenched my buttocks (as you do), I could feel some discomfort there - not in the coccyx but well....somewhere slap bang in the middle of my saddle area - deep in the buttocks. Not pain, nothing sharp. Just a kind of "oh, something's not quite right". No buttock pain, no thigh pain, no hip pain. This sensation tends to subside soon after waking. Then a few weeks later, lower back ache. This is relatively new - on and off. Stiffness in the morning - sometimes, sometimes not.

Been to the doctors twice. First one took an x-ray and I was surprised to see I had mild scoliosis - although it's a barely perceptable curve. First doctor actually put the pain down to scoliosis, said not to worry and told me to do certain exercises.

Lower back pain got worse so I went to the same hospital, but saw a different doctor. By this time, I'd already done my "cyberchondriac" duties and was aware of AS, but didn't tell the doctor, as I wanted to hear his opinion without me steering the conversation at all. He actually said "without seeing your x-ray, I'd put AS as a possibility - with more tests needed - but on seeing your x-ray, and examining your movements, I think AS is very very unlikely as your SI joints look good, as do your spine vertebrae, and you have good movement". He diagonsed some kind of micro-trauma to my SI joint caused by bad posture. This is a possibility as I do slouch a lot and work in front of a computer 12 hours a day, certainly not in an erect, "proper" way. I also cycled 3 or 4 times a week for an hour each time up and down hills. I would do these stints without warming up (or down) and I would experience some "sensation" in my lower back after each ride (kind of a dull ache) that would subside an hour or two later.

Symptoms in more detail:-

- night/morning sacral-region "dull ache" - at night it can make it uncomfortable to lie in certain positions, although strangely this comes and goes (last night, I was completely pain free for example)

- stiff back, which comes and goes. Almost always it's lower back. Sitting with a cushion at work does alleviate the ache

- twitching right eyelid. I've had this for about as long as the symptoms described above. No pain, no irritability (other than that the twitching itself is slightly irritating). Researching this, most likely cause seems to be stress.

- minor acid reflux (mainly burping, slightly bloated feeling), although lately this coincides with my anti-inflammatory pills which CAN cause this side-effect. I have a history of acid reflux, so it's not so unusual for me to be experiencing this. I know this can be associated with back troubles without it being AS too.

- tightness in my rib cage. Comes and goes. I don't know if it's part of the acid reflux as I feel bloated when I have it.

No other symptoms to speak of. Neck, knees, cervix region, feet, hands, elbows, hips - no problem.

On the level of pain, my lower back is the worst area - it's just irritating, far stronger than the sacral "ache" which is still feeling very minor (and tends to come and go).

My main question: what were your early symptoms of AS? I know some of you here don't even have an AS diagnosis (and I may not even have AS), but I'm interested in the early days symptoms of members here (whether diagnosed or not with AS).

Hi Al39,
wow you just described me in my 20s. Mine started the same way. Pain in my lower "tail" area, the coccyx or whatever that lil bone on the end of your tailbone/spine is. And the right eye twitching.

The right eye twitching turned into what the doctors kept thinking was "pink eye" or some sort of eye infection for the next 10 years. It was actually uveititis/iritis(sp?) sorry bad flare morning Late 30s to early 40's is when most men get dx'd too, not sure what the stats are on us women not many that I have found. Not sure if you are male or fem by your screen name so sorry but you fit the age range.

I do have full blown AS diagnosis after 20 years of thinking I was nuts and a hypochondriac. Has your doctor done a blood test on you for the HLA-B27 gene marker? That is the real test.

tightness in you ribcage is also a known symptom, the acid reflux could be as you said the anti-inflammatory pills or just plain old acid reflux.

Some of the other early symptoms that I had were fatigue, a general feeling of flu like symptoms, body aches and the iritis. The back of my eye would swell from the inside due to the body thought there was an infection or my eye was the enemy or something and try to kill it. Hurts like heck. It wasn't until my hands had swollen up like balloons one day before the docs thought hey this might be an auto-immune thing. I had a sed rate out of this world but was serum negative for RA.

You are very lucky to actually have found a doctor who is not only aware of AS but is willing to do more tests. Even if he did say it is unlikely I would go back and ask if they did the HLA-B27 blood test and if not could they just to put your mind at ease and rule out what could be there.

Or talk to your regular doc tell him/her what the ER doctor said and request it. Ask family members if any of them had any weird type "Arthritis" and if it runs in the family. AS usually does. After my Diagnosis I had fam contact me saying "you know Aunt so&so had some weird form of arthritis and so did Aunt so&so both on dad's side. About 4 of them popped out of the woodwork. So check with older family members. If so this strengthens your request for the blood work to be done.

I hope you don't have it. This is not fun I would share with someone I hated. Hope you are lucky and it is just bad posture and the need for some corrections on that and some other form of back related exercises.
Funny I am not on here much but popped on today bcuz I woke up feeling like he!! and said hmmm let me see whats on KickAS
Hope to see a post from you real soon saying NO AS!!!!:)
good luck hun
Christina

well, mine came on much different than most peoples. and currently i'm dx'ed with undiff spondy.

anyway, at age 30, horrible gastritis. the year prior i had IBS, then this gastritis thing hit me from a little gas after lunch on monday to doubled over in pain in the doctors office before the end of the week. the first year was horrible pain almost all the time. i mostly just wanted to curl up in a ball on the couch it hurt so bad. got it under control more or less in three years.

then at age 35, i truly messed up my left dq tendon and left upper back (rhomboid area) 2 weeks apart from one another. that must have been my first flare. and it was dramatic. took 4-5 years to get things under control with excellent PT and physiatry (physical / rehab medicine).

then at age 37, i had my first SI flare. i was walking along, felt a tightness, bent over to release it, and went into full blown muscle spasms. was on my way to PT and figured if anyone could help me, it would be she. but she couldn't. the full blown spasms eased up in about 18 hours. then it was just very weak and sore for the next month. needed to use a walker to get around the first week or two. PT got it under control somewhat, but it really took years and finally a cortisone shot to settle it for a year til the next flare. about 1-2 times a year my SI flares like that, but i know how to get it back under control faster now.

since then i've flared through the years. each flare is unique and bad in its own way. whether its my SI joint or neck or feet or a torn tendon or ligament. usually its a combination of things with GI symptoms thrown in for good measure. and sometimes dry eyes and / or skin rash decides to join in the fun.

prior to that first flare, i played tennis, biked, ran, swam, etc etc, and never tore or even so much as pulled anything.

so for me, it wasn't just a little back pain first that got progressively worse. rather for me it was like "wham!" all of a sudden.

the only tell tale sign early on? i used to get searing neck pain when i'd do desk work for an extended period of time. though my neck is worse now (C2/C3 osteophytes), my posture / chair is better.

one of the biggest saviors for me has been my swopper chair (its a stool with a foam topper on a spring with lots of motion). its very good for strengthening my lower back muscles and lets me be in good posture. i couldn't function without it. it cost a lot of money, but worth every penny. used work money to buy the one at work, but my own money to buy a second one for home. the kind of chair we sit in can make a world of difference. car seats really matter for me too.

and a good bed makes a huge difference. i have a pretty firm one, but soft at the same time. sleep on my back with pillows under my knees. and a soft feather pillow to cradle my neck.

i figured early one, as did my PTs and physiatrist, whether it was inflammatory or mechanical, a lot of the treatments are the same. the big difference being anti- inflammatory meds. but even with those i still do things that one would do regardless of the cause.

Hello AL. I'm new here as well. My AS was diagnosed 3 years ago, but since I was 20 or 21 I would have back pains in the sacral and lower lumbar areas of my back. They would come and i would have a dull ache and stiffness after sitting and upon waking from sleep.Being young never paid it any attention, especially since goin to doctors did not rank high on my list of things to do. Im 50 now and they still dont make the list. Never really had much confidence in Western Medicine. Anyway the pain and stiffness would always come and go. For many years i just chalked it down as partying and havin too much of a good time. My sacral pain was predominenton my right side.....deep under my butt cheek and towards the middle and would radiate up into my lower lumbar.All those years the only "Doctor" that i would go to was Chiropractic or Accupuncture. It wasnt until I was 34 and hurt my back real bad at work that things started getting worse. AS is a slow developing disease....at least in my case. As I said, I am 50 now and have fused vertebrae in my lumbar and my cervical spine. Alot of times when I wake from sleep(which I do not get much of)I am so stiff. The closest i could describe it as is Rigor Mortis....no kiddin, it's bad. When i did work i would have to get up two to two and a half hours before i was suppose to get up just to get some flexibility.As well before I was diagnosed I had gone to see doctors and it seemed all they wanted to do is write a prescription for a narcotic pain pill. I never would have it filled because I refuse to take them, so instead my drug of choice was ibuprophens and BC powders. This is just a tip of the iceberg.....feel free to ask my anything, will be glad to help in any way.

Thanks for your replies people!

Well, it's certainly stressful to get these symptoms and ponder on which direction my life is going to take.

One question I have : if someone doesn't have the HLA-B27 gene marker, does it mean they don't have AS? Do you need to carry this gene to have the potential to be diagnosed? In other words, if I do NOT carry this gene, would it rule out an AS diagnosis?

lillmiss222, how quickly did the iritis come on?

there are certainly people that are HLA-B27 negative that have AS.

here are the stats as i remember them:

95% of people with AS (dx'ed with AS) are HLAB27 positive
but that also means 5% negative

but only 25% of people with undiff spondy are HLAB27 positive

i was dx'ed with undiff spondy because there is no evidence of fusing on the scans. inflammation at the entheses and in my spine (mainly neck and lower spine and SI) and bony arthritic changes in the joints, yes, but not fusion.

i'm HLAB27 negative which would further go along with undiff spondy.

Like Allen said AS is a slow progressive disease. I forgot to mention that too. Sue thank you for coming up with the stats, that is good to know especially for Al39 to get a correct, Positive or negative. So you have the kind that attacks your body where and when it wants to.

Hmmm gotta think back. The eye twitching started in my early 20's felt real weird, also the same time I was having the tail bone pain. The iritis came on about 5 years after the twitching started and went away when the iritis started. When it hit me it was like a freight train, one day I was fine and the next I thought my eye was coming out. I was Rx'd prednisone drops and antibotics for the "pink eye" they thought I had.
But yes about 5 years after the twitching. But I attributed the twitching/fluttering to nerves.

Sue how long did it take you to get a diagnosis if you don't mind me asking being HLAB27 neg.? You must have had an awesome doctor to figure things out! That is wonderful, horrible Dx but wonderful that they caught it.
Christina

That's quite a long time for an eye twitch! I'll have to get more tests done - all my research about eye twitches come up with benign causes (stress, caffeine, eye strain etc) - well I'm hoping my cause ends up benign. So hard to figure this out, but a blood test will give me some clues.

Hello and nice to meet you! Glad you found your way here, but sorry to hear about your back problems. Good for you trying to figure it out.
Regarding your doctor's response to wondering if this could be AS: many doctors and rheumatologists, too, focus on "if there's no damages visible by X rays then there is no AS." What I've learned is that one can have spondylitis but not officially ankylosing spondylitis, if there are enough symptoms present but no fusion visible by x rays. It is a clinical diagnosis.
You may wish to find a rheumatologist who specializes in AS. I believe SAA has a list of specialists in each state, but maybe you need to join to get it? I'm not sure...
I would suggest getting tested for celiac disease, and taking your NSAIDS with prilosec or something that protects your stomach as much as possible, and to take with a full meal. Zyflamend is a natural anti inflammatory if you are interested in that.
My early symptoms: back problems that were diagnosed as mechanical. Foot pain, TMJ, twitches in one eye, too. Fatigue. IBS symptoms, uveitis. Then, at times, I'd feel completely better. Long story but my symptoms got worse and finally I found my way to an AS specialist. I don't have any changes visible by x ray, but I have spondylitis.
I think it is great you are taking charge of your health, and I hope that this is just an opportunity for you to reach the best health ever by taking good care of yourself body mind spirit.
Check it:
http://paleozonenutrition.wordpress.com/...rch-paleo-diet/
Best wishes and please do keep us posted,

yeah it is but as you said it came and went and I attributed it too stress, which at the time I had A LOOOOTTT of lol. And caffeine too lol I am a coffeaholic. Funny you mentioned that.

I hope beyond hope for you too that yours is benign and just back strain and simple stomach troubles. Good luck keep us posted.