Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First symptoms

Hello,

I'm curious what the first symptoms were for everyone? I'm 26yrs old, and about 6wks ago i started having low back pain. Sometimes I feel like it goes into the tailbone area; when I do feel it in the tailbone, I hear lots of popping noises and it's hard to get up from sitting, but once I take ibuprofen 800mg, that goes away. Also I have left hip pain and left buttock pain. Sometimes the butt pain hurts more than my back. Pain in left thigh. My massage therapist said both my quad muscles and hamstring muscles are very tight on that thigh, but my right thigh is fine. She massaged them for me and sent me home with biofreeze. I have to sleep on my side with a pillow in between my knees or else i'm very stiff in the mornings. I can also no longer sleep on my stomach since it feels like my spine curves inward more than normal which causes discomfort. It feels like a heavy weight on my lower back when I lay on my stomach.
I've been to physical therapy and my therapist has me doing a lot of hip flexion exercises and suspects my pelvis is weak. (which has me so confused because I was exercising regularly prior to this.) He also felt a "wing" on a vertebrae in my very lower back which has tension in it. I think he called it tension, anyways.
My primary care doctor refused to give me an xray until 6 weeks of misery, so I've been trying to figure this out on my own- going to chiropractors, physical therapy, and massage therapist.

I do have microscopic colitis which is why I'm slightly suspicious of the AS diagnosis and I don't recall hurting anything.

Any insight is appreciated!

Hi stg. My first AS symptoms were exactly 3 weeks to the day after my appendix operation (it was bursting as they were operating so some infection kicked in the AS) and I had a massive flare in my left hip where I could hardly walk. It was a Friday night and I was working as a waiter and I could barely get back and forth from the kitchen to the dining room.

WELCOME, stg1788:

My own first symptoms were excruciating sciatica. First one leg, then the other and then it became more severe, affecting legs, butt, then classic lumbago, coccydynia, widespread sacroiliitis, costochondritis and the myriad symptoms increased after taking NSAIDs, which lowered the pain levels but did not stop progression of permanent skeletal damage, and certainly even accelerated this.

Typically in men, AS begins in lower extremities/back, and AS will not usually show up on X-ray in the earliest stages.

This is a primary cause of AS:


Your antigen status might be slightly helpful, but not definitive unless positive. From Your description, it is highly indicative of AS--not neurological or cancerous and eminently treatable (self-management).

HEALTH,
John

Hindsight is 20/20:

Now I realize that the chronic constipation starting way back before I even started school (I remember lots of prune juice way way back) was almost certainly the start of it all.

I've read multiple times that spondyloarthropathies start in the gut (even if one doesn't have diarrhea or constipation symptoms there will be inflammation in there, most often the ileum). My rheumy and I believe that's how mine started.

I learned how to deal with the constipation through diet and occasionally meds.

When I was in my late 20s, I started having a bit of gastritis, but it went away. Then at 29, I had a year of undigested food / diarrhea but no pain, so when my doctors didn't see any parasites in my stools, they chalked it up to "IBS" and told me not to worry about it.

A year later, when I was 30, the severe gastritis (had me doubled over in pain) hit me hard, and the undigested food / diarrhea was back bad again. This lasted really severely for a year, and to a lesser degree for three years. Finally got that under control with prilosec and mylanta for my stomach and a "low residue diet" (like someone with crohns would use) for this time period.

Then when I was 35, the severe tendon problems started in my wrist. Lots of PT and a cortisone shot and learning how not to overuse my hands. A month later my neck and upper back got really really bad (its been up and down since) and a few years later, the SI joint started flaring big time...OK in between but really bad flares.

I was finally diagnosed 12 years after the joint stuff started (age 47).

I also had mild psoriasis all along; not really sure when that started as I always thought it was just dry skin until my dermatologist told me "no, that's psoriasis".

And my dry eye symptoms (pretty bad at times) started at least back when the gastritis and not digesting my food started; I always assumed it was eye allergies; I know better now.

Over the years, since the joint stuff started, I've had a few episodes of erythema nodosum (during bad flares) and enthesitis in so so many joints (feet and wrists along with neck and SI probably my worst joints, but rotator cuffs, IT and TFL bands, hamstring tendon entheses, knees, etc too)

I've been diagnosed with spondyloarthropathy. Here in the U.S. that was enough to get humira...BEST "DRUG" EVER!

Hang in there. It can take a long time for diagnosis, but eventually it all makes sense. For me, finding the right rheumatologist was the key. So many told me I didn't have an inflammatory disease or a rheumatological disease. Now that I know what I have, its all so obvious. Finding a doctor to see that made all the difference for me.

Sounds all too familiar. Prior to my dx of microscopic colitis, I also had chronic constipation when I was in high school. Awful feeling. After that I started getting sick to my stomach with nausea and vomiting. I eliminated a lot of foods, except for gluten. My markers on the gluten test were very high but my celiac disease test was negative. Eliminating gluten helped calm everything down. The next year or so I started having diarrhea and terrible stomach pains to where I would loose my sight for a brief moment. Lost a good amount of weight and went in for a colonoscopy. My GI doc reassured that I was most likely fine, just IBS. He ended up calling me the next day to tell me I had microscopic colitis. I've noticed that I can control it fairly well with hormone therapy. Too much fluctuation of hormones causes flares.
But ever since all this new pain started, my stomach has pretty much been on it's best behavior. A little too quiet if you ask me.

I stumbled across AS because it says it can affect just one side. And it seems all my issues are on my left! I did have left knee issues too in the beginning (pain and difficulty bending the knee) but that seems to have diminished.

Dr appointment on Thursday and I am hoping that I can have an xray FINALLY to shed some light on what's going on in there! I was very tempted to skip the primary care doctor and go straight to rheumatology but I think they'd probably think I was a crazy person.

Looking back, Initially I have a dull ache develop at the base of my spine for a year or so. It wasn't enough to cause problems, just thought it was a bad back. Until I got a bad dose of food poisoning and then my first massive flare with it. Every time I put my foot to the floor to walk it felt like something was biting me. It was agony and I hobbled like a 100 year old. Took a further 3-4 months to be diagnosed with AS. Also had constipation struggles over the years.

yeh, asymmetric...and moves around. Left neck, right SI more than left SI but it moves back and forth, left dq tendon, left ulnar wrist in past, then right ulnar wrist more recently, left hamstring tendon worse than right, right IT and TFL band attachment at the trochanter, left heel, tendon-ligament on top of right foot, left bicep tendon, right rotator cuff, etc...not at the same time, LOL, but over time.

Nothing ever showed for me in X-ray. The radiologist never wrote much in my MRI reports and then doctors chalked it up to "getting older". The CT scan of the SI did describe the degeneration going on, but my rheumy at that time tried to convince me it was just osteoarthritis...but osteo isn't going to flare without use. I even had a bone scan done and I could see the inflammation in the pictures, but the worst inflammation of the time was on my sternum...the picture was brightest where the pain was the greatest...it was so obvious that they took multiple pictures of the area and commented that they'd never seen anything like that before....and yet the report didn't even mention it. why? because it was such an abnormal thing?

So it took the right doctor to see through all of this and help me out.

Hello there,

My first symptoms were SI pain in my left leg, did not realize it was AS and just lived with it. It went away after 2-3 months and I attributed it to a bad bed in summer school at the university dorms.

Came back 3 years later in right SI and then low back shortly after.. this time AS stayed.

Regards,

Tim

Hello There. Firstly there appears to be a difference in the joint involvement depending on whether you are male or female. I am female I have had some involvement since 20's but wasn't enough to think it was anything else other than a sore back. Approx 12 years ago I got campylobacter and was hospitalised for 6 days also had CFS. Within a few days of discharge my rib cage was so sore and stiff I had problems breathing also my left hip was affected and I needed a walking stick to walk with it. My spine was sore between the shoulder blades. This subsided and I was left with pain in the spine but not as bad. Rheumy diagnosed AS. My CRP is always above 30. My hips have been the worst issue for me and achilles. Recently my lower back and hamstrings have been an issue. My xray shows fracture and a disk movement forward of 11mm and some degeneration so its time for meds. My suggestion to you would be get the tests done and see a Rhuemy for advise. Good luck.

at 14 yrs old my knee started hurting, but quickly moved to the heels of both feet. every step was painful, It even hurt to lay on my back in bed because of my heels touching the bed.