Last night might have been one of the hardest nights I had to go through since the onset of this horrible disease. It started out as a beautiful day... the sun was shining, the birds were chirping, the weather was quite warm, you know, it felt like the worst winter of my life was finally over... and it was snowing, SNOWING at midnight and I think the temperature change happened in like five minutes or something because the pain just hit me all of a sudden! So one minute I was writing my thesis, and a quite satisfactory chapter might I add, and the next minute I was jumping up and down in the middle of the room crying and begging for it to stop!
It felt like two red hot hooks had just pierced through my sacroiliac joints and hanged me on the wall, like a gutted animal. It felt like a disgusting creature who had two-inch long nails tore my skin and flesh with its fingers, and pulled my sacrum out. It felt like someone was poking all the nerves in my sacroiliac joints and my lower spine with a dull knife, just for the fun of making me jump, gasp and cry.
And for the love of Mary Shelley, this disease could be the inspiration for hundreds of gothic stories if I were to metaphorise everything it made me feel!
PS: Also, it was the first time I distinctly felt I had acute inflammation in my right SI too... so there's that...
Gothic horror, indeed! I hope you’re feeling better today.
Thank you Seenie, better, yes, but not well... It's already night time here and the creature is creeping back into the room... Right now I have this burning pain that runs down from my left SI to my ankle (yes, I'm lucky enough that my SI pain is projected that low!), and a weird stabbing pain that comes and goes in my right SI. And it's really upsetting because I had been telling myself that it was just one SI, I had a long time before it creeped up my spine but now my other SI is obviously involved... Though my physical therapist had told me that "there's no such thing as one sided sacroiliitis because it is actually one joint".
I have damage and I have pain, but I’m grateful that my spine and SI joints have been spared. I hope the winds bring you sun and dry warmth to ease your aches! Good night, LL.
Thank you very much Seenie :) good night and have a nice day I guess :)
I'm scared really... with these "new" pains in my spine, I can feel the panic rising from my stomach...
No, LL, no panic. The pain is a sign that something is amiss, but you already knew that. There’s a change of seasons and it’s a high stress time for you and both those things can exacerbate the pain. Keep a log of what is going on, including weather notes if you think there is a pattern there. Coddle yourself as much as you can, and take the medication that you’ve been given. You, like the rest of us, have a disease that waxes and wanes, comes and goes, and, like a naughty child, acts up and behaves. There are better days ahead. Believe that, and get some rest.
Thank you very much Seenie, as always... I finally finished working for tonight and I can take my medication now! (I only take it once I've finished working because I don't need the extra drowsiness). I want to believe that things will get better as you said... Sometimes I even dare to hope that once I finish my thesis I'll be just fine - but of course then I remember that I have a physical problem, not a psychological one. But I'm sure that once this stress is out of my life I'll feel better anyway, even if I'm not miraculously cured!
LL, I'm so sorry to hear this--I just noticed your blog now! I can't begin to imagine how it must feel to have pain in both SI joints--or I should say on both sides of the joint? They do call them left and right SIs, don't they? I don't know how you can stand it! And the pain down to your ankle--does it feel like your leg is being sliced open--like a fish being filleted? Ugh that's horrible pain. I had been hoping you were doing better!
Hopefully with a restful night's sleep (if that was possible) you are feeling better by now. I'm sure the challenge of working on your thesis could be hard on you. I don't enjoy drawing as much anymore because concentrating so hard on it makes me hurt.
I do hope for better days ahead for you!
Dear Grandma J, first of all, I'm much better today.. I woke up fine. I only have a stiff neck and very stiff shoulders along with a stabbing pain in my shoulder blade, but that's "I worked 6 hours non-stop on my thesis last night" kind of stiff so it's ok :) I'll do some gentle yoga now to relax my muscles...
The pain down my left SI definitely feels like you described it, a -hot- blade running down my leg is how I describe it. Yes it is called left and right SIs and of course there are two joints connecting the sacrum to the ilium but it is also in one piece, it's just two sides of the sacrum - I think that's what my physical therapist meant. So the inflammation travels to the other side much more easily.
Glad your feeling better today. How crazy is it that this moves around so much! Just a thought are you comforting that bottom end when you spend all that time working on your thesis? I know when I broke my tailbone and had some SI issues extra padding and not sitting excessively helped. Of course this is a whole mother pain demon this disease we have but if you block those nerve flows it could trigger flair. Hope I’m not sounding like a typical “know it all” that tells us something simple that doesn’t help but I have heck of time with pain when sitting too long.
I’m glad today is a bit brighter for you. Rachel brings up a good point. What kind of chair do you sit in when you are working at the computer?
Rachael, no you definitely don't sound like a "know it all" and that's actually really good advice! Sometimes simple is all we need and one of the wonderful things about this forum is you can hear everyone's advice and experience on how to feel better... I think my brother has one of those special "bottom pillows" with a hole in it. Maybe I can ask him to send it to me and give it a try.
Seenie I think my chair might qualify as "orthopedic" because my father is very picky about what I sit on and lie down on due to my lifelong back problems and he got me this chair... But still, sitting in one place for 6 hours is a very long time, no matter how comfortable your chair is. I think I should try to move more while I'm working.I try to remember stretching a little when I get up to get a book or one more cup of coffee but of course that's not enough...
Ah, it sounds like you’ve got the chair thing covered. That’s excellent. You’re probably right about breaks – how about a little yoga with your coffee?
Ha! Wouldn't that be nice :D Maybe I can put my feet behind my head while I'm searching for articles or something :D By the way, can you believe that before my first SI flare, I actually believed I was really close to doing that? Hımm...
By the way, with stretches I actually meant simple yoga moves :D that's what I really do :D