Sounds like a silly question coming from me, but my SI is just fine, so I wouldn’t know. My sister, on the other hand, (who has not been diagnosed with PsA (yet?) has pain that is making me wonder.
So when you say you have SI pain, what is that like? I know where the SI joint, so you can just say “there” and I’ll know what you mean.
Thanks, Team PsA!
For me, it's like no other pain I have ever experienced. I can't bend forward, sideways or backwards, and it hurts to lift my leg on the side that is painful, so walking is out of the question. It is not a constant pain. If I don't move at all, I feel fine. It doesn't burn or ache. It is a deep pain and very hard to describe. And for some reason, it causes me referred abdominal cramping. So, not only do I hurt in the back, I also hurt in the front
Sorry if that doesn't really help you.
For me sitting is literally a PITA. Driving and sleeping sucks; constantly switching positions. Walking makes it feel ok, but too much and it’s a pain pill.
If you have ever overdone yourself in the gym, that’s the feeling and best way to describe it. I have minor permanent damage that just showed up in my current xrays and it always hurts…
I have SI pain, a "torturous" tendon snarl per MRI and L4/L5 damage that causes referred hip pain. I will try to isolate each pain for you: my tendons burn from groin through sacrum with activity such as walking and standing for long periods. If I continue what I am doing the burn gets more intense and the tendons pull down towards the ground. The L4-L5 causes pain in the ball and socket area though when they inject my hip it does not relieve the pain but injecting in my L4/L5 with an epidural it relieves the pain for 6 weeks. When I don't get off it or drive for long periods it hurts worse and worse. I also slide sideways in my seat as if my right shoulder is trying to reach my right hip in a strange sort of sidewards arch. I can straighten out but I can't seem to stay there for very long. I have to relieve the pressure by any position other than siting. If I continue to sit the bursa in the greater trochantor get irritated and pop out. They feel like gum drops to my hand! They do reduce in time if I stay out of the sitting position. They also reduce if injected. The SI burns where the SI spot is. If I do not rest it the pain or burning gets stronger I describe it as humming and it can get up to singing. At singing I have trouble thinking about anything else for very long and have to walk with a cane. The SI always starts humming with walking for me. If I continue to ignore it it begins to scream. At that point I have to sit and rest. There is no other option. The pain can radiate from bra strap to knee but It is strongest at the center the SI joint and loses intensity on it's way out. It never wraps around the hip, the pain is straight up and down from the SI. The pain is a burning screaming intense pain but it does not start at a 10. It starts at 1 or 2 with pressure being it's predominant feature. If I put a Salonpas pad in the center of the SI it helps but nothing relieves besides getting off of it.
I hope this helps. It's the best I have been able to isolate one pain from the rest.
Yes, this is all very helpful. My sister has mysterious pains, the worst being “there” (SI joint) and it radiates down to her knee. Walking hurts, lying down not so much. She describes it as a nagging ache, as opposed to a sharp or burning pain. Lifting her leg can be very painful. She also gets transient aches and pains here and there, and always adjacent to a joint like the knee.
I am trying to convince her to ask for a referral to a rheumatologist to see whether she has PsA as well. It will take 6-9 months to get the consult. If she turns out to have “IT”, then if she subsequently has a serious flare, she won’t have to wait that long to get treatment. I’m really thinking “what if” strategy here. If she waits until the disease flares, it could be a horrible half year.
I have no idea whether she too has inherited our Mother’s high pain threshold, but I’d hate to see her with joint damage (like her big sister’s) down the road.
That sounds very sensible to me. I would also ask for a PT referral. The painful lifting of the leg is reminecent of piriformis (I have lost my ability to spell tonight sorry!)
You all describe pain very well. Too well. I’m NOT enjoying reading this. And I’m sorry for all of you for what you suffer (which seems like a lot).
At the moment my SI is fairly quiet, although I did snarl the F word in the nurses station when I got off a chair after sitting for about 20 mins lol. The pain I feel is usually in the top of my buttocks sometimes one-sided but often both, its like a knife stab when I lift my leg to step and when I put my foot down. No pain med helps that sharp pain but my TENS does help alot. The SI is by far worse when I have been standing in one place for too long, sitting and laying too long also affects it. When the pain stabs I can feel it down the back of my legs and also to my hips.
Luckily my SI pain is from ligaments not the bone and I manage it by not poking a stick at it, I sit when preparing food,sit at a patients bed when performing clinical work, never sit for too long so I arrange my clinical and pc work to suit me each day. Not much I can do about it waking me early morning at the moment, but get up and walk to the bathroom.
It makes me deranged. After hours of not finding peace sitting, laying on my back, standing, laying on my tummy, I feel like to jump from a 10th floor and take somebody with me in the process. Fear not, I can barely move so humankind is safe. I have a bunch of these little travel agency gnomes crushing glass and freely distributing across my lower back, then setting it on fire. I am having it today and my 45 minute commute from the island to downtown Corpus has been a nightmare.Because I try to compensate the pain, I start twisting and eventually I hurt from the neck to the knees. I fear the toilet and cuss words escape sometimes when I try to get up too fast. I took two Reprexain half hour ago and they are not touching the pain, so I am in for a long day. If it does not slow down, cane it is :(
My SI first started as throbbing in my groin. It feels like to me that I have a piece of lead stuck in my lower back, when I sit it feels like it is sitting at an awkward angle. No matter how I sit eventually it starts to get sore, constantly have to shift around, as it to find an angle where this imaginary piece of lead fits into it place.
And then other times I get a shocking pain that comes and goes in waves, moving very fast. It knocks me out of commission.
Doing anything for too long seems to cause it to ache, be it sitting, laying, walking, standing.
I poked a stick at my SI on Saturday and have woken it up…I’ve come to know what triggers the worst pain and try to avoid it, but on Saturday I forgot, thought I was wonder woman, and I’m paying the price.
Great info, Team PsA! What your descriptions have told me is that there doesn’t seem to be a typical, conclusive SI pain, except that there is low back involvement and referral down the leg. Throbbing in the groin – now that would really confuse a doc, and I’m sure it did! Burning, throbbing, aching, referred abdominal cramping, leaden, like muscle aching … wow, what a wide range of sensations! The common characteristic seems to be its being made worse by sitting, standing and walking.
And yes, this is what my sister complains of: aching on one side of her lower back, with a feeling of heaviness. It all “spills” down her leg. Standing and walking is the worst for her, sitting less so. She goes to bed every night with two ES Tylenol Arthritis, and takes voltaren daily. Has for years. Sis really does need to see a rheumie so that she has one inn the background in case she flares.
I knew I could count on my PsA friends here to give me the 411!
Lovemydogs said:
I understand all of the descriptions of this SI joint pain. I've had my L4/5/S1 disc removed but I still get pain on occasion. Right now ( for the past 4-5 days) my SI is flaring. I love the comment aboutfearing the toilet cuz that is so much right on the truth it isn't even funny and I myself have shreaked the F bomb a few times when I turn wrong or just move a hair in the wrong direction. My rheumy approved a temp handicap tag for the winter...that made me very happy.
Hope your getting good info from us....
Hi Surferette, I feel your pain. I take from your name that you are a surfer. My handle, Golfette, means I love (loved) to play golf. I’m on a wonderful vacation on Daufuskie Island in s.c. We are surrounded with the beauty of the beach, sun, eagles, deer and golf courses. It’s the first time I can say I’ve been here 2 weeks and played (lol) golf only once. I guess we just need to focus on things around us that we love and hope that tomorrow brings comfort and joy in new ways. Hang in there friend. surfs up and I pray you too will be up soon and pain free.
Surferette said:
It makes me deranged. After hours of not finding peace sitting, laying on my back, standing, laying on my tummy, I feel like to jump from a 10th floor and take somebody with me in the process. Fear not, I can barely move so humankind is safe. I have a bunch of these little travel agency gnomes crushing glass and freely distributing across my lower back, then setting it on fire. I am having it today and my 45 minute commute from the island to downtown Corpus has been a nightmare.Because I try to compensate the pain, I start twisting and eventually I hurt from the neck to the knees. I fear the toilet and cuss words escape sometimes when I try to get up too fast. I took two Reprexain half hour ago and they are not touching the pain, so I am in for a long day. If it does not slow down, cane it is
The pain I feel is like my hips are being pulled apart when I walk and lower back has a radiating nerve feeling that causes me to feel nauseous when I sit.
If I sit for too long when I stand I feel like I have seized up! I have to hang on to something when I stand for fear of falling over and of course I stand slowly and take a few painful steps and straighten myself to a tall stand. Sitting for a prolonged period hurts, I have a radiating nerve feeling that radiates from my lower back into my hips and some times legs. Some days one side can be more painful then the other. Basically like I have a continuous case of slight bursitis in both hips and the piriformis muscle is continuously inflamed causing the sciatic nerve to act up creating the radiating pain.
When sleeping I sleep with a pillow between my knees, changing sides over the course of the night. Road trips are hard, along with prolonged sitting. I am constantly moving in my seat, some times my legs go to sleep or tingle due to that horrible nerve pain I get. Exercise helps but it's hard to find a happy medium. If I over due it I am in increased pain. Sometimes it takes me a few minutes to be able to walk normally (with out feeling like my legs are far apart).
I ran a full marathon back in 2006 and after running for 3:47 it hurt to walk. The feeling of walking after sitting for too long is very similar to how I felt after I ran that marathon....
Does anyone find that there lower back cracks all the time with this? Mine cracks all the time. Like giant heavy cracks.
Hello, TaraLynn,
I know it has been a really long time since your post. But I was doing a search on the forum about the SI pain/sacroiliitis since it's causing me real trouble right now and I saw you wrote that you sleep sideways with a pillow between your legs.
One of the first things my rheumy warned me about was sleeping on either on my sides. He said that most people with this problem sleep on their sides curled up because it makes them feel better but it actually causes more damage and I should always sleep either on my back or on my tummy.
Please don't get me wrong I don't mean to be nosy or anything, I just remembered what my doctor said when I read your post. And I thought maybe this information could be useful for you or anyone else having problems with their SI joints. I don't know if it would make a difference because I have always slept on my tummy (like my whole life).
I hope you are feeling well now though :)
TaraLynn said:
The pain I feel is like my hips are being pulled apart when I walk and lower back has a radiating nerve feeling that causes me to feel nauseous when I sit.
If I sit for too long when I stand I feel like I have seized up! I have to hang on to something when I stand for fear of falling over and of course I stand slowly and take a few painful steps and straighten myself to a tall stand. Sitting for a prolonged period hurts, I have a radiating nerve feeling that radiates from my lower back into my hips and some times legs. Some days one side can be more painful then the other. Basically like I have a continuous case of slight bursitis in both hips and the piriformis muscle is continuously inflamed causing the sciatic nerve to act up creating the radiating pain.
When sleeping I sleep with a pillow between my knees, changing sides over the course of the night. Road trips are hard, along with prolonged sitting. I am constantly moving in my seat, some times my legs go to sleep or tingle due to that horrible nerve pain I get. Exercise helps but it's hard to find a happy medium. If I over due it I am in increased pain. Sometimes it takes me a few minutes to be able to walk normally (with out feeling like my legs are far apart).
I ran a full marathon back in 2006 and after running for 3:47 it hurt to walk. The feeling of walking after sitting for too long is very similar to how I felt after I ran that marathon....
I read some of the older comments....Seenie, it's very interesting how SI pain, I think, resembles disc protrusion pain. Well, at least for me because my SI MRI showed some PsA damage in or around my left SI joint (the radiologist was interested that I wasn't having pain there). I also had a lumbar spine MRI at the same time (this September) and the pain was in my right butt and leg. That was caused by the L4-L5 disc protrusion.
Now, I have the SAME EXACT pain (not quite as intense) but in my left butt and leg. I'm thinking maybe this is the left SI joint acting up as it has PsA damage, or maybe it's my disc protrusion, but affecting the opposite side.??
We all probably feel or describe pain differently. Mine on both sides has been a deep, hard pain--like a drill going into a spot in the bony area at the top of my butt and slightly to the left of my spine. Pain runs down the outside of my leg and usually stops just above my ankle. Pain can radiate out to my hips and even up higher in my back. It's horrible--makes me tired. Today I called my P.T. and went there before work.
I'm glad I read the above comments because I had slept on my side last night, thinking that helped, but it did hurt more this morning. The pain comes in varying degrees and for now it's tolerable, but I don't feel like doing much. I use heat and ice a lot, but it's not helping much. OTC pain meds don't help, and I don't take prescription pain meds. I think a large Salonpas patch might help a little.
My P.T. told me today that a steroid injection could really help, and the steroid dose is very small in those injections. If this keeps up, I will consider it.
What did your sister ever find out? I see you started the discussion a long time ago. I'm sure by now she found out what it is and hopefully has gotten relief for it!
Hello, all. While sad to say, I am happy to see I am not alone. The symptom that first sent me to the doctor was pain on sitting. The pain is right below the SI joint, all over the sacram area. I was treated for disk issues, eventually having back surgery that was not successful. Five long years, and I'm finally seeing a rheumy, who believes my issues are PsA. I am unable to find a resting position. Sitting and laying both put pressure on the SI joints and affect the now very achy hip joints. My symptoms seem to be hip and spine - none of the knee, fit and fingers issues. As the pain escalates, it goes down my legs. It starts out achy, then progresses to burning. Once burning, it is hard to think around it. It almost buzzes in the brain, if you know what I mean. My employer has been accommodating by getting me a standing desk, however, standing in one position is causing stiffening and pain. Because of the pain with sitting, I have really isolated myself from work-related conferences, social occasions, even lunches. Unless you experience it, it is had to describe how far-reaching the effects can be. I had the markers required for PsA diagnosis in blood work and now the rheum says he must have something objective on x-ray in order to get something that will help me. The hip MRI done last year while seeing a physical medicine guy was normal so the rheumy ordered MRI of SI joints with and without contrast, hoping to capture inflammation so that I can move on to treatment. Thanks for listening and I hope your sister gets some treatment and relief.
I've had countless injections in my sacroiliac joint, have worn pain patches, sat on ice packs, heating pads - all to relieve a god-awful aching pain. It's like a migraine in your a$$! NO really. I find myself sitting on the other cheek just to take the pressure of the bad one. It's where you spend a chunk of your life, so it hurts good when it hurts.