Pelvic pain

[amandajane76]

I am really intrigued whether pelvic back pain in Sacroiliac joint is link to sle

[Suzie]

For me it is. I used to always get it around Easter time until about October then I realised it was beacause I was sun sensitive. Now I can stand in the que at the supermarket without being in agony. Simple pleasures!

[misty14]

Hi Amandajane

Pain in sacroiliac joint is linked to SLE. It can be very painful so I hope your getting help for it. X

[Penelope-Mary in reply to misty14]

I have sacro iliac joint pain too. I needed an emergency laminectomy a few years ago,. I too have wondered whether there is a connection with SLE which I too have.

[Barnclown]

It can be:

Lupus joint pain is in synovial joints. the only spinal joints that are synovial so can involve sle synovitis are those in the sacrum (In humans, the sacrum supports the spine and is supported in turn by an ilium on each side. The joint is a strong, weight bearing synovial plane joint) and the very top cervical joints (The fibrous, cartilagenous and synovial joints at the top of the neck (atlas and axis bones)). I have involvement in all these joints. My version of pelvic girdle pain does involve my sacrum as well as my IBS & urinary tract/kidneys & gyn conditions, so this is considered a chronic complex persistent pain syndrome.

For more info see The Lupus Book by Wallace

[Fighting in reply to Barnclown]

Barnclown,

You have a great deal of information at your fingertips. I enjoy reading your posts.

[Barnclown in reply to Fighting]

☺️👋💐

[tremarel]

I was wondering too as I am suffering so much. I have hip bursitis & now this. It is agony . Walking especially steps & stairs are a no go. Do you find getting up after sitting painful ?

[amandajane76 in reply to tremarel]

Yes, radiates to groin and as some rude person said.....i walk like a duck.only med to help was oxycodone before I had injection

[tremarel in reply to amandajane76]

Does it feel like sciatica but comes from back of hip & pelvis ? The nerves shoot down leg & hit knee & foot just like sciatica. Is it steroid injections they give for it ? Only I've had loads of steroid injections in my hips for the bursitis but they don't work anymore. I've had lupus for 30 plus years with kidney transplant, fibromyalgia, neuromyotonia, immune deficiency & microscopic colitis.

[Penelope-Mary in reply to tremarel]

Yes I do too and it's becoming increasingly worse.

This forum is keeping me sane after years of thinking I'm alone out there: down under 🐨

[chrisj]

Interesting. I've always thought the pain down my left leg and lower back was sciatica as that's what my gp suggested, although it was never properly diagnosed .

Suffered terrible pain for a long time. Its more manageable these days and I get stiffness and pain across the bottom of my back more than down the leg. I have to be careful how I move my back...have osteoarthritis as well and that's widespread. Food for thought there Amanda, hadn't associated it with Lupus. I have mild SLE..

[amandajane76]

Well blow me.i ve just had my second lot of s.i joint bilateral injections that work very well.i had no idea it was linked.i got to see a different rheumy who I understood would help me with so called sec fibro symptoms.i had previously been told my con tissue was in remission, steroids reduced and that it was Fibro causing issues.yet new dr took one look at mottled rash, poor circulation, listened to me talk about back pain and put steroids up, ordered bloods and asked me to go back in 4 weeks .she gave me info to tea on immuno suppressants.clearly I am not mental and that's why these s.i injections have been a god send

[Fennella02]

How do we know what is S.I pain due to SLE and what is sciatica or simply wear and tear?

I now get chronic pain from the back of my hip joint which radiates down the back of my upper leg. It's not generally super-severe but grumbles constantly. My hips have been extremely painful during this most recent flare so I have been wondering about the cause.

[Barnclown in reply to Fennella02]

Good question!

My impression is that if the immunosuppressants you're on help clear up the pain, there is likely lupus involvement, but in many cases (including mine) the pelvic pain syndrome is complex: involving several different causes, which respond to different treatments

E.g.in my case it seems the sacrum pain is part of a complex that includes long standing spondylosis, hypermobility, and chronic IBS, + chronic diagnosed urological & gyn conditions,.....all of which result in chronic flaring pelvic girdle pain (including pain in my hips & flanks)

For years, I mainly lifestyle managed my pelvic girdle (hip & flank) pain: the prescription NSAIDs & analgesics my GP & consultants ordered did virtually no good...but the Alexander technique, pilates, yoga & tai chi + massage helped somewhat...enough to conscientiously do them for years. Finally a series of bilateral lumbar & sacral facet joint denervations (pain consultant operations under X-ray using electricity & meds) over the years since 1998 numbed the element of my pelvic girdle pain that relates primarily to the spondylosis. Then, in 2011, my treatment began for what has turned out to be infant onset sle, daily plaquenil + myco + amitriptyline (with pred tapers as necessary) began to reduce any remaining sacral joint synovial pain elements to only a hint....and, as well as all that, antibiotics for my urology & gyn conditions help clear up pelvic girdle pain they've stimulated.

But, at 61, I do think of my version of chronic pelvic girdle pain as an ongoing study....I don't expect to ever find it's disappeared altogether forever

[amandajane76]

Mine does not feel like sciatica.they injection under x ray and for me the relief is quick.i have no idea if it is linked

[hardyvon]

What is SLE ?

[Paul_Howard Partner LUPUS UK in reply to hardyvon]

SLE stands for Systemic Lupus Erythematosus, more commonly just referred to as 'lupus'.

[hardyvon]

Thanks Paul

[Entryways in reply to hardyvon]

I am waiting on my lab results I have been diagnosed with sjogrens and raynauds now being tested for lupus but I've been having hip pelvic and sacriolic joint pains for years it comes and goes I guess when I'm having a flare I've also had a dry cough for months now has anyone else had a cough I'm not sure if this maybe another sign of lupus my previous labs have shown inflammation and auto immune disorders I should get my latest test results this week