the waiting game

[starrynox]

so, i'm not by any means new to chronic pain. i've had it on and off (more on than off) for the last ten years or so. the weird thing is, my pain presents a little bit differently than 'typical' knee pain, and also absolutely nothing showed up on medical scans, and so doctors usually have just kinda shrugged their shoulders at me.

but recentlyish my parents began to wonder if i have juvenile ankylosing spondylitis, since my dad has it and they found out that jas can present with joint pain, rather than back pain (which i'm also starting to have). plus, a blood test we did came back with hla-b24 positive, which is highly correlated with as.

but my xrays are still normal (not unsurprising, and not a bad thing either) and stuff so it's like? there's no concrete way for me to know if i have it or not, all i know is that i'm in pain and it can severely impact my quality of life some days. thankfully not having a set diagnosis hasn't stopped my new doctor from prescribing pain medications, which are helping, but i'd just...rather be certain about this, you know? i hate the waiting game, and there's some part of me that wants something to be identifiably wrong with me so that i at least know why this is happening.

 

[Flaxney]

Do you spend a lot of time sitting down? Perhaps looking into knee mobility exercises would help. Or visiting a physiotherapist, just in case it's more a biomechanical problem than a biochemical one.

 

[starrynox]

at this point i feel like it's pretty certainly not a mechanical issue, due to the somewhat unusual presentation of my knee pain that runs counter to pretty much every mechanical explanation that my doctors could think of. plus, i've seen a lot of doctors/orthopedists/chiropractors/acupuncturists/sports trainers/physical therapists over the years with pretty much no improvement. really the rheumatologist was the only option we hadn't pursued yet.

i do spend a lot of time sitting these days though, because i'm in too much pain to walk constantly and standing is one of the worst things for my knee pain.

 

[Kira]

I just saw this and wanted to add my two cents. Atm, both of my knees are out of action. The right one has arthritis so it's always sore but now the left one has flared up with gout. I've had gout in my right knee twice before but this time the left one has got it! So walking isn't really happening much!

I also have arthritis in my lower back (which is worse) Due to my physical aliments and mental (another story!) I'm on a Disability Pension.

I'm sure you know about this but I thought I'd mention it anyway. In relation to my back and knee, first I had a CT Scan followed by an MRI. Unfortunately whilst they did pick up the athritis, not the severity. It's crazy that we feel such immense pain but it can't be completely detected. Anyway, I hope things improve for you. There's always hope!