I have not checked in for a few days because I feel as if someone has taken a sledgehammer to my lower back and hips. I refer to it as a "superflare", though it's probably just a word I made up but that most can relate to. My lower back has not hurt this bad since the instant of my car accident. It's an area that seems to be overlooked by every doctor I've been to, and believe me I've complained til I'm blue in the face. Honestly my doctor's PA is the one who has done the most. I saw her a few days ago and she was utterly appalled at how much I've deteriorated since seeing her a month ago and has ordered a battery of tests that I don't even want to think about. I hobble around, hunched over like a crone, taking tiny steps because big ones make my hips hurt too much. It seems I'm in a constant stage of one step forward and three steps back. I'm depressed but still try to make myself do things and not sink into a pity party.
I'm not asking for any answers or anything, I really just needed to bitch to people that get it. And for me it's a foul mood, foul mouth sort of day, but thank you all for letting me ramble because that helps so much sometimes.
That's precisely what we're here for. And we do get it. I'm glad the PA is working for you. We definitely need an advocate in the medical office.
I wonder though….you said the low back & hips get it the worst. I get the same thing. Deep in the low back and it wraps right around where the bony part of the hips are. The doc said that was not a place SS usually hits. Sounds to me like it is. And not for nothing, it only kills me like that when I'm flared up. I can overdo it physically one day and hurt a bit but it goes away like any other muscle ache during those times. Super Flair is the perfect word for it and it is NOT like a day when you did too much. Once it starts, it takes a very long time to go away. If I'm lucky its only a couple weeks. I wonder if its just another case of them discounting something too quickly.
No sinking!!!! Swear like a truck driver and keep rolling. Some days its all we can do.
I'm in the sledgehammer group for sure! My back has been KILLING me for the last week, and it makes you vicious! It's a pain that is positively debilitating! Mine is the SI joints and the bottom center, where I have some nasty central canal spinal stenosis. It can be from overdoing it, from low barometric pressure or just because you have joint damage or arthritis of the spine.
My hips kill me too, and I know that sooner or later they will need replacing, right first. I cannot sleep in my sides because of this, and it's the very top of the leg area.
It's hell laying on my back, on my sides, and on my stomach so how do I sleep, sometimes I have to sit up and sleep, and of course this does no good either, as you end up slumping.
I agree enjoylife, it really hangs on! My Doctors don't call them flares, they call them 'pain cycles', and they are very hard to break!
You might have someone check to see if you have one leg longer than the other one. Sometimes my pelvis actually shifts and my physical therapist can tell by checking length of legs and where the pelvic bones line up as you are resting on your back. She is able to work with me and you can literally sometimes feel it shift back into place. When it is out and has been for sometime it may take two or three sessions with her but oh the relief when it goes back. The pain can be out of this world.
Yes, I too get the 'tilting pelvis' and it is excruciating! My DC can usually get me back in place for this!
Ramble on! Those of us with the same back issues understand. Superflare was a great word. I wonder if most doctors connect our spine conditions to SS. Sometimes I feel like breaking into song at the doctor's office: "The head bone's connected to the neckbone..." I don't though because he would probably think I had really lost it! Keep your sense of humor!
Oh my gosh, thank you all SO much for stories, your humor and support, and your appreciation of my made up word Superflare! (LOL...just realized I said "gosh", so I guess I'm out of my foul mood, foul mouth mode! In fact, I'm feeling pretty damn good right now, and just couldn't resist throwing in that one little swear word!!!)
Anyway, my PA gave me some Celebrex samples and after about a week I started thinking that my hips might be feeling a little better. And the next day even better, up to today where I'm feeling better than I've felt in I don't even know how long. My first inclination is to run around doing all this stuff I've put off doing but I am really forcing myself to not rush it. My lower back still hurts but I'm fairly accustomed to that and I'm having an MRI done next week for that. I am so fortunate that my PA and regular doc take my aches and pains seriously and I know how frustrating it is when a doctor says, "Well THIS shouldn't cause THAT." So you know I really appreciate people telling me they also feel something like I'm feeling, though I hate hearing that someone is feeling the same, but at least you know you're not nuts...which I've certainly felt on more than one occasion!
And enjoylife? I could swear every word you wrote was me! Thank you ALL!!!
Thank you too….every time we identify something the doc blows off, I feel a little more hopeful and a little less frustrated.
We sjoggies have to stick together. (or swear, as the case may be)
I'm beginning to think the Daypro is not as effective as it used to be. Celebrex is one med I have yet to try, perhaps I'll ask about it when I see my GP, see if he has any samples to throw my way!
On second thought, he may not, as I've had stomach ulcers!
SK…. I was on DayPro back when they were telling me I just had tendonitis. It didn't work well for me at all. They switched me to Relafin (which is supposed to be gentler). It really made a difference. Helped a lot. I don't have stomach issues yet…though I wonder with the amount of meds I take now….but Relafin definitely didn't bother me that way. May help to ask?
Now that I've been taken off biologics for good, I think I need something stronger, I tried so many, I cannot keep track of them! I'll ask about the Relafen, thanks!
I keep noticing people here mentioning biologics. What is that? And it is for SS or other things?