I haven’t been here in a while, after my rheumy appointment I’ve been hit with some serious exhaustion, sleeping at least 14 hours a day. It’s been brutal!
I had my MRI, I got one privately. I hate having to go that route, but my mom in law offered to pay for it, she didn’t want me to have to wait the 6 or so months to get one. I had my MRI last week, and have booked in to see my rheumy on this Thursday, so much quicker this time!
The MRI clinic sent me a report of the findings. It reads mild DDD from l4 to s1, slightly worse l5-s1. Asymmetric sacroilitis, worse on the left.
This is surprising. About a year ago I had an xray where they found that my sacroilitis was only on my left side. This may seem weird, but is it evening itself out?
It also says moderate amount of bone marrow edema. Yikes, that sounds kind of scary. It says it affects the sacrum bilaterally, and extends through the left is joint, into the inferior aspect of the left iliac bone.
So obviously there is something going on. It’s funny because my left side hardly bothers me as much as my right SI joint. And to top it off my back pain has decreased a lot in the last 6 months, or maybe I’m just coping better.
Welcome back West_coast Meg! Waiting 6 months for an MRI? That is brutal and unacceptable! I find pain really waxes and wanes and does not seem to correlate with damage at all. My PsA can be painless while damage occurs or hurt terribly but really is not progressing. I find a lot of my pain is in the tendons, bursas and ligaments which respond really well to hot water baths or exercises and Salonpas or Tiger Balm patches.
Are you on a biologic yet as the x-ray seems to indicate you have PsA and it is causing damage to me.
Hi, Meg, I was thinking of you the other day. Shame that you had to go private for the MRI. Michael, yes, the long waits for non-emergency procedures is the ugly underbelly of our health care system. On the other hand, in the case of an time-sensitive condition, you can find yourself inside the MRI machine within hours. In some provinces, there are private clinics you can go to (even though they are, strictly speaking, not supposed to exist) in other provinces, there is no alternative.
Those results certainly sound as if something is going on. I had bone marrow edema (swelling inside the bone) in my feet and I think it was responsible for a lot of my pain.
I’m so glad that you will be seeing your rheumatologist soon. That should be a very intteresting visit.
Your Mother in Law deserves flowers! She’s a keeper!
I find most of my SI pain is from enthesitis and not the actual bone problems there, maybe its the same for you? The whole area is basically a mass of ligaments so just a small amount of inflammation can cause major pain in my experience
Than you all for your replies.
I am wondering too if most of my pain is caused by tendons as well, and if my exhaustion is caused by what’s going on now.
I’ve been sleeping for a good 14 plus hours of day or I feel like I’m hung over (without the fun preceding it). I’ve also been so exhausted that I can’t wake up after going down for a nap.
Tomorrow can’t come soon enough!!
Sorry I just read my initial post… I meant to say I only showed sacroilitis on the RIGHT side when I first had an xray done about a year or so ago.
I just recently had my initial Dx x-rays back that showed significant SI joint deterioration on both sides, though lots on the left, and like you my lower back has actually been a lot better over the past year or so! I had persistent pain there for about 3 years, and then it started easing so that I rarely have pain back there any more - most of my pain is in the neck and shoulders (and recently down the left arm tendonitis). But in terms of x-ray damage, the SI joints are worst right now (some squaring of the vertabrae in the thoracic area completes the damage picture). Really the strangest thing about all this - that damage doesn't always equal pain.
I hope your exhaustion gets tons better!! I've been badly fatigued these days too, waiting for the right meds, so I feel your pain . . .
Hi Meg, nice to hear from you again!
With bone marrow edema and exhaustion like that, I hope your rheumys appt is fruitful and you can adjust your treatment a bit to improve things
thanks for letting us know what's going on. Hope you get a good report from the rheumatologist--even if the MRI left you with questions. I guess you and the doc have a conversation starter! Do tell us how it goes. Good luck! Oh, and go back to sleep ;)
Finally after how long! I got a diagnosis today!!
Psoriatic arthritis, woo woo!!
It feels like such a relief to have a diagnoses, to have a doctor say “yup, this is what you have”
He gave me pamphlets about AS though because I have axial arthritis. Which makes sense to me, and as long as I’m going to get treatment, that’s all I care about.
I start on celexa tomorrow and then go for a tb test. If the celexa isn’t enough I’ll be going the biologic club.
It’s been a long time coming
YES! Having a diagnosis means that you can get to work feeling better. It sounds as if your rheumatologist isn’t wasting any time. That’s great.
Good luck with the meds. Don’t disappear again for so long, OK? Let us know how it’s going!
That's wonderful Meg! I also have the dual diagnosis of PSA and AS because of the axial issues - newly diagnosed as of 2 weeks ago and heading into biologics soon hopefully. Such a relief, right?!
Looks like we are in the same boat! HUGE RELIEF!!!
That’s wonderful Meg! I also have the dual diagnosis of PSA and AS because of the axial issues - newly diagnosed as of 2 weeks ago and heading into biologics soon hopefully. Such a relief, right?!
Yay for a diagnosis! What a great feeling it must be to be able to move forward with treatment.