I had another MRI of my sacroiliac joints and my lumbar spine. Good news, everything is looking ok for now :) I mean, there is still inflammation visible on my left SI, but no damage yet. That is a good thing I guess, with the pain I was feeling for months now, I was sure that there was damage! It was a big relief to know that damage isn't there yet. And there is some degeneration on my facet joints (the joints of the spine if I understood correctly) but it might very well be because of the scoliosis. Since my SI inflammation is not bilateral we are not suspecting AS, thus we are not jumping to conclusions about it yet.
Anyhow, I told my pt that I didn't feel like I was in a flare (especially my energy levels are much, much better) but the pain in my SI is still bothering me, especially when I lie down at night to watch some movies or read a book. It just throbs and burns. And my pt told me that it looked like it wasn't an acute bout of inflammation anymore, and it was becoming chronic. And now I'm wondering, what makes a flare? I mean, there is inflammation visible, but I don't feel like flaring. So do we call it chronic inflammation? And does that inflammation ever go away? Or will it always be there? If it is always there, what extra is happening when we flare? As you can see, my head is full of questions again... Does anyone have any answers?
PS: I had to stop PT because it made my SI hurt even more, especially the thing that they do with electrical waves. But I will keep on with the physical therapy exercises and light exercises like yoga and move on to harder exercises like pilates when the winter is over (my PT told me to do so..).
Hi LL–that’s exactly what happened to me! I mean, stopping pt because it hurt even worse when someone pressed on it. I just can’t figure this stuff out either. I’m thinking, because you’re young and probably active, and probably lifting things (like your suitcases, etc.,) you are, unfortunately, aggravating the sore spot in your SI. Maybe. I’m happy to say my left SI pain has finally settled down. All I’ve had for the past couple of days is some numbness and tingling from my butt down my left leg. It’s not constant, though, and I’ve resumed pt. My p therapist told me she thinks we can get that to go away. I wish yours would let up! Do you try ice and heat? I was doing a lot of that when mine was really sore. I even took my ice pack and heating pad to work. And, I don’t lift anything over about 10 lbs. anymore. I know how horrible that pain can be, and when it’s not horrible, how irritating that constant pain/inflammation can be! I hope you don’t have this indefinitely! I just don’t know what else you can do. I’m just telling you what I did because my MRI did show PsA damage or something on my left SI joint, and that was during the time it was my spinal cord was impinged from a protruding disc and my pain was on the right side!
Grandma J - I didn't try ice and heat although I know of it, for two reasons. Firstly, because I'm not sure if it is ok for me to use heat yet, I read that it can aggravate the inflammation so I'm cautious about it. And second, don't laugh at me, I'm afraid of putting ice on my back/buttock, getting a cold and having diarrhea :D
Sybil - I think your analogy couldn't be any better :D I know what you mean about the chronic nature of the disease. When I stop flaring, and I am pain free - yes, it happens sometimes! - I feel like I finally got rid of this disease, and I can go back to my normal life... I feel like it will never happen again. Actually, it is really hard to believe that I once (and here, "once" being a couple of days ago) felt so, so sick and helpless. But then it happens all over again :) But I think I'm finally beginning to get the hang of things. Here's what I've learned so far: 1) Take an antiinflammatory once a day even if you feel ok, because you will feel worse if you don't. 2) Never sit for too long, never stand for too long. 3) You can fight the "moderate" fatigue by not sleeping, even though it might be the hardest thing you have to do. 4) Be moderate with your pace - you might feel like you can conquer the world right now, but you will feel like a dung beetle in a couple of hours if you don't pace yourself. 5) Try and be gentle with yourself. Allow yourself the time to heal emotionally.
My energy levels are definitely up. This evening I almost ran up the stairs! I mean, it was only a couple of steps, but I was energetic and pain free enough to forget all about this horrible disease and try running - my "normal" reflexes were back for a couple of seconds! And it was a beautiful moment :) But then I paced myself - see rule no 4 :D
My SI is still bothering me, but you know what, I'm kinda sick of it, and now I'm trying to ignore the pain. I can do it I think. I can learn ignoring my SI pain just like I learned ignoring my back pain and the discomfort caused by my bowel. And pretend to live a normal, healthy, twenty-something life!
Thank you so much Sybil, you made me smile :) I wish you and everyone who is looking for some "normality" a normal, healthy, pain free and running-up-the-stairs life as well :)
Well, LL, I wouldn't laugh at you! If I thought something was going to cause me the "hershey squirts", I'd avoid it too! But, there is something about the heat. I've been told the warmth can relax the muscles and get the blood circulating in the painful area. Usually it helps me when it gets extremely hot (I lay on it) and then I have to turn it off for awhile. We buy these really inexpensive electric heating heating pads ($11.00) made by Kaz Co.
I love it that you're feeling energetic, and I hope it lasts and lasts. But I know about the worries that feeling good just seems to be a temporary thing--because it always is, even when we follow your instructions, which, yes, that is hard to do! Sybil and I have our age working against us as well--okay, Sybil, not you as much as me. But, when I'm feeling good, it's not much different than how I felt at 30. Maybe a little slower. But then some stiffness or pain reminds me of my real age. Now you, on the other hand, are so young and it has to be hard to feel weak and achy and old when you're only 20 something! Just know that there is good stuff available that can make life better...Sybil and I have both experienced how good a biologic can make you feel. Maybe it'll be short lived--I'm hoping not. But the months I've been without PsA symptoms have made my life a lot better. I would feel about as good as any healthy 61-year old could feel if not for my back giving me trouble! But even that is much more tolerable because I'm not dealing with the inflammation all over my body from PsA.
Well, if one antiinflammatory a day is enough for my energy levels to go up, maybe I could try a cortisone shot or something for my SI pain? I know that they have some risks as well and shouldn't be done much. But maybe a treatment that aggressive would be enough for me? I mean regular antiinflammatory medicine with a small dose and a local treatment for my SI? I'm feeling optimistic these days... Even with the pain in my SI, traveling down my leg to my foot. Because my ankle pain is gone, my knee pain is gone and my wrist pain is gone (which were weird, you know, not like my SI pain, but maybe pain is different in every joint?). My energy levels are up and my only problem right now seems to be my SI. God, I wish this optimism stays with me as long as possible... :)
Grandma J - I finally built up my courage and tried ice. Wow, it was like a miracle. A few minutes of ice is enough to numb the pain for forty minutes or so. I think I will be doing it more often.
That's great! I was hoping you'd try ice or heat. I know doctors and physical therapists always say ice at the onset of pain or swelling and then heat after that. For the neuropathy in my feet, ice was like a godsend-when I could finally crawl into bed at the end of a day with horrible neuropathy and I'd press both my feet against the ice pack (like my feet were praying). They would feel better within minutes and I could fall asleep. Ice packs never work for my neck pain, though. I just sort of experiment with ice and heat to find the places they work best.
You are right about the steroid shots into your SI. It's probably not a bad idea. My p therapist told me it would settle down the inflammation and she said it's a very small amount of steroid because it's only going into a small area. If my pain hadn't been letting up, I probably would have bit the bullet and went for the injection. I got so turned off by steroids that I want to avoid them as much as possible. But sometimes it's the only thing that'll work.
I hope you're out of a flare for awhile and that SI/leg pain goes away. It's hard to always have that annoying pain--IDK which is worse, the butt pain or the leg pain. For me, it would alternate between the two places--sometimes it felt like I had an open sore on the front of my leg, but sometimes the pain would go down the side or back. So hope the ice keeps working for you!
I will ask my rheumy about the shots.
I'm with you on the SI pain Grandma J, a couple of hours ago I was thinking I didn't know which was worse - the butt pain or the leg pain! It's like my whole leg is being cut open with a hot, hot blade while my butt just keeps throbbing and sometimes there is a sharp, sudden pain that made me scream and scare my mother a couple of times! And the pain goes right down to my left ankle. My PT thinks it's because the edema caused by the inflammation presses some nerves (apparently there are no major nerves going through the SI area but the lower back is quite close so the edema can press some nerves on the lower back? That's all that I could understand). But I guess it's quite common with SI inflammation. Actually that's one of the reasons she asked for an MRI. To be sure this leg pain was caused by sacroiliitis and not some herniated discs or something. And turns out it really was caused by the inflammation of my SI. I even feel some numbness at the top of my foot and the lower portion of my foreleg.
But hey, I still don't feel the fatigue :)
EXACTLY! The knife slicing your leg open--like a fish being fileted!!! (Idk if that's spelled correctly-it looks funny!)
Yay, and yes, no fatigue!!!! I hope that keeps up--maybe being with your mom is helping?
Being with my mom is DEFINITELY helping :) Unfortunately I will be leaving next Sunday...
If PT is too much, try water exercises. It can be low impact, or no impact. Get a pool noodle, put it under your butt and just start moving. After an hour you’ll be worn out, but the pain relief will last a long time. Eating a lot of greens will help inflammation. With PSA being in my hip joints, my inflammation went from a 40 in. Waist to 52 waist.
Hımm, maybe my energy levels are up because my mother has been shoving greens down my throat for the last two weeks :) Good to know that they help with the inflammation, thank you very much :)
I am a bit of a germaphobe, so I never liked pools very much. I try to stay away from them as much as possible :) (and as it turns out, I didn't need germs to make my life miserable to begin with :P) Anyway, I will go swimming in the sea in the summer.