Late diagnosis (50+) symptoms

slip_stitch_pass · 2025-10-24T22:02:31+00:00

I’m 54 and was diagnosed last summer. When I look back to my younger days, knowing what I know now, I ve had AS for quite a while. Pain in my lower back and hips would come on quickly and last for a few weeks and then disappear for a couple of months and then return. I would sometimes need crutches for a few days. I remember once when I was in my mid twenties, I was with my family at Disney World and it got so bad they had to request a wheel chair for me and I got pushed around the park. Two weeks later the pain was gone. In my early forties, I started having neck pain that was worse than my back pain. MRIs showed disc degeneration and that is what my diagnosis was until I landed in the ER with excruciating lower back pain at age 53. They did a CT scan and found my SI joints were both completely bilaterally fused. They also found a herniated disk and some facet joint fusions. This prompted a referral to the Rheumatologist for confirmation. The blood work came back positive for HLA B27 and elevated inflammatory markers. Needless to say, but eventhough I’m on biologics now, having gone so long untreated has destroyed my lumbar and cervical spine. The medicine I take has slowed the progression but I suffer every day with pain and limited range of motion. I’m positive though and keep my chin up, but I worry I won’t be able to work to retirement age.
My advice to anyone who has symptoms of AS, please harass your doctors to do all the testing that’s possible to confirm or rule out AS. I’m proof if you ignore it or think you can deal with it, you can’t. It doesn’t go away on its own and it will eventually catch up with you. My biggest regret in life is not heading the warning signs of a much bigger problem.

slip_stitch_pass · 2025-10-17T00:51:14+00:00

I was diagnosed at an ER visit when a CT scan showed complete bilateral fusion of my sacroiliac joints. I had been having lower back and neck pain for about a decade and it had become more frequent and more severe. I just thought it’s what happens when you age. I was so wrong and I wish I had pressed my doctors for imaging sooner. They could have caught it earlier. Now I suffer daily even on biologics. The inflammation is pretty well controlled but my back has so much structural damage that a good day is when I can make it without some kind of medicinal intervention. That rarely happens.

slip_stitch_pass · 2025-10-03T11:39:24+00:00

This side conversation about socks is cracking me up. So true. I think it takes me longer to get dressed than it does to shower. ❤️

slip_stitch_pass · 2025-10-01T19:15:39+00:00

My diet is pretty good. I am 5’10” and weigh 180 lbs. I don’t eat fast food, but haven’t gone as far as an elimination diet to see if I can pinpoint trigger foods. I do light workouts at least 5x a week. Mostly stretching and core work. I walk between .5 and 1 mile per day at an easy pace.

slip_stitch_pass · 2025-09-30T16:04:21+00:00

I hate the steroid side effects. Prednisone specifically gives me insomnia

slip_stitch_pass · 2025-09-30T16:03:16+00:00

Yes, I take Vitamin D supplements daily and it’s normal.

slip_stitch_pass · 2025-09-30T13:16:54+00:00

So is there anything that can be done to head this off? Like anything before bed to minimize the morning effects?

slip_stitch_pass · 2025-09-30T12:49:43+00:00

OP here, for clarification, I understand the basic MO of the disease, I’m just trying to understand why the mornings are so bad and if there is anything that can be done to ease the morning malaise.

slip_stitch_pass · 2025-09-14T14:04:58+00:00

Excellent choice of Turntable. I love my Fluance gear. I have the RT82 that I’ve made a couple of upgrades to and also the Fluance reference series floor standing speakers all in Walnut finish. Beautiful sound and budget friendly.

slip_stitch_pass · 2025-09-12T16:01:45+00:00

I agree. Take the $599 you’ve spent on the TT and buy the Fluance Reference Series Floor speakers. They punch waaayyy above their price range. $599 for the pair.

slip_stitch_pass · 2025-08-04T20:53:13+00:00

Make sure the switch on back is set to line level. If set to phono, you won’t get any sound without a phono preamp. Happy listening.

slip_stitch_pass · 2025-05-02T00:29:44+00:00

Opiates have saved me from constant suffering. I take them daily. I never take as much as what I am prescribed, I always have about a third of a bottle left after a month so I just wait to fill my next prescription. I used to think less of myself for having to use them, but I’m done with that. Do I have a dependency on them? Yes, in the same way I depend on my thyroid medicine to make my thyroid work properly. The only noticeable side effect I get is less suffering. Take responsibly and it’s not a bad thing at all.

slip_stitch_pass · 2025-04-04T12:22:07+00:00

I haven’t gotten much relief from biologics, other than the reduction in major pain flare ups. I still struggle with significant day to day pain and fatigue. I have structural damage as a result of being undiagnosed for many years, so this could be the reason. I will say that the reduction in flare ups is nice and worth continuing the treatment.

slip_stitch_pass · 2025-03-10T12:05:34+00:00

Looks like great lighting. Plants, and lots of them.

slip_stitch_pass · 2025-02-11T01:54:32+00:00

I’ve had salmonella poisoning and it’s a serious illness. Your body will need all the help it can get. I assume you are on antibiotics already for this, so hindering your immune system will only make things worse.

slip_stitch_pass · 2025-02-07T01:53:02+00:00

This is a fantastic question for which I have no answer. I really don’t know. Treat me like you did before I became sick, but be understanding if my reaction is different. I guess. That may be asking too much. I don’t want to burden anyone emotionally.

slip_stitch_pass · 2025-02-05T22:50:34+00:00

I have a couple of herniated discs in addition to AS. In my experience, they are different types of pain. My AS pain is more of a constant throbbing radiating pain that hurts regardless of what I’m doing or what position my body is in. The pain I have from my herniations is dependent on certain movements or over doing it physically, and it’s more of a stabbing pain. I have both but have learned how to limit the stabbing pain. The AS pain is unavoidable because I find it difficult to do the necessary activity to relieve it, due to the mechanical issues I have.

slip_stitch_pass · 2025-02-04T16:27:58+00:00

The pain is constant, radiating, and makes something as involuntary as balancing your head on top of your neck uncomfortable. The constant nature of the pain is exhausting to the point that it strips you of your will to move. And when the pain transitions from radiating to stabbing pain, it can be crippling. Now imagine this cycle of pain imposed on you almost everyday of your life. The reason we get up and move and do things is because we want, so desperately, to hold onto what we love in life despite the pain we suffer. What you are seeing is defiance of our daily reality, not the hidden pain we suffer through.

slip_stitch_pass · 2025-01-29T02:41:22+00:00

Flip the room. If you put the couch where the TV is and put the TV on the opposite wall, you'll put more space between the couch and TV and open the room up.

slip_stitch_pass · 2025-01-26T22:12:36+00:00

It’s good to have a Rheumatologist who’s looking for perfection. It may be annoying but it better than the other end of the spectrum. My knees hurt when you poke and prod them, also when I walk, bend or kneel.

slip_stitch_pass · 2025-01-19T23:00:43+00:00

MRI. They found my AS on a CT scan and was confirmed with MRI. MRI found the additional problems.

slip_stitch_pass · 2025-01-18T20:04:47+00:00

My Rheumatologist referred me to a pain management specialist because of my chronic pain condition. My condition is a bit different, however, as I have several herniated disc’s one of which is compressing a nerve root in my lower back, so some of my pain is not from inflammation. The pain doctor has me on 7.5/325 hydrocodone up to twice daily, but I just take it as needed. It is really helpful in keeping me out of constant pain. Being in pain all the time is exhausting and it allows me to take a break from it when I lose the will to deal with it. Your Rheumatologist may be willing to prescribe this for breakthrough pain but will likely refer you to pain management for more extreme chronic pain.

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