lower back and hip pain

[voiceteacher]

Hello,

Do any of you suffer from lower back and hip pain that does NOT show up on xray??  I have primary sjogrens and am not treating with any meds because when I went to the rheumy I wasn't sick enough.  I still think I am not sick enough for meds but I have terrible hip pain, particularly in the morning and after any period of rest.  My lower back hurts chronically.  The hips have been about two years now and the lower back about six months.  Since the xrays and MRI showed basically nothing, I went for chiropractic and massage on a regular basis.  Chiropractic felt good but never stuck and the massages hurt like heck and only lasted a few days.  Frankly I can't afford to get those massages as often as I think I might need.

My question is this - - is it the sjogrens causing this pain?  A physician friend of mine keeps saying I probably have fibro too but I am not going for a diagnosis since there is really nothing to do about that anyway. (I won't take the meds due to weight gain and I already struggle with that a great deal).  Any insight would help - -thanks,
Voiceteacher

[Sleepy In Seattle]

That kind of pain can be hard to diagnose - there are so many potential causes. My Rheumy said that these diseases (I have Sjogrens secondary to Lupus) can often affect the S-I joint and cause hip/back pain.

I had lower back and often HORRIBLE hip pain for YEARS before diagnosis...thought it was sciatica, etc. One time I was in a horse corral, bent over to pick up a tiny rock and my S-I joint just went so totally out of whack I could not even move - like in the cartoons when the old guy bends over and says "Oh, my back is out!" and stays doubled over while everybody laughs (it's NOT FUNNY in real life!!! ). I dropped to my knees and had to crawl 30 yards to the fence and pull myself up, in horrible pain the whole time.

Anyway - I ended up with an amazing sports-focused physical therapist who found that my S-I joint was very weak and my pelvis was almost 1 1/2" out of alignment. He specializes in golf injuries, which often affect the S-I joint and hips because of the twisting motion used in a golf swing. He used exercises, chiro and massage (I'm not gonna lie - the massage was VERY PAINFUL because it had to break up lots of scar tissue in the muscles along my spine that had been compensating for the misalignment for many years). We things back in alignment over about 12 weeks - 1 or 2 treatments per week. It was not fun - but it worked.

About a year later, things got bad again (not AS bad, thank goodness!) and I went back for another 8-week session.

Then we bought a new mattress - one of those memory-foam ones - and that has made a WORLD of difference in keeping things healthy.

I had hip pain my whole life, practically, and now I have almost none.

Again - there are tons of potential causes for these things, but a good Physical Therapist can help you feel a lot better. I like the sports-injury ones because they tend to be focused on maximizing your activity level instead of just getting you pain-free.

[stprdi]

good to hear about the memory foam mattress cuz we bought one yesterday with the adjustable base. hasn't been delivered yet but my body is looking forward to it.

[McKorky]

I have dealt with that everyday for the past year or so and I also have Primary Sjorgren's.

[quietdynamics]

Fibromyalsia was added to a few years later to the SJS Dx; happened to see it on a letter the Rheum sent me, and I do not match the trigger points (which I have read is being abandoned as the "it" diagnostic tool). 
I had lower back and hip pain way before the SJS Dx. After a long car drive, I would need to ease out and then I would waddle me way into the home, and I was always physically active 

The pain got to the point that originally I thought the back pain was a kidney problem? And I began having problems walking and managing stairs. This may not happen to you, just something to be aware of and talk to your Dr. about.

I would push to get this addressed: Chronic pain of any kind is a major stress. Experiencing this on a daily basis is going to affect you emotionally, the quality of life, physical and mental fatigue... a cycle and progression we do not need!
And it WILL disturb the quality of your REM sleep, which is when your body works to restore itself... The human body is complex and strives for a state of homeostasis.   

Cymbalta and Neurontin help me with the pain. Manages the pain and most importantly restored daily life functionality/ quality.

[Katybarstool]

Hi

I have had hip and back pain for several years. Things have improved a great deal after working with a sports physio. He found that I have some damage to the discs in my lower spine, and a difference in leg lengths. I also have hypermobilie joints.

I've been following his exercise routine for about 6 months now, had an orthotic made for my shoe, and had a steroid injection in my hip for bursitis. This has improved things a lot. I do have wear and tear in my hip, according to xrays, and will need a replacement at some point, but for now, I carry on doing the exercizes every day.

I take Plaquenil, Celebrex, Amitriptyline, Paracetamol and Codeine for pain, and it's managemable just now.

Kathyx

[lori]

hip hip hooray...NOT!!! yes my hips and low back are my biggest issue- I have RA as well... over the years have had cortisone injections... years ago the first one i had did help- after tht..no go

i see an  accupressure guy who help-s
currently seeing chiro who has a new machine that is equivalent of a 4 hr massage..

also hot water bottle with HOT water helps....

i have to be very careful how i sleep- that can amke me worse if im not just right

i too have no idea what causes it- my ra is under great control- no inflamation on the blood test... rhuemy says we can have bursitis in hips with sjs and ra....

soaking in a tub of hot water is good...

wish i had a cure to share- im struggling with this same thing

lori

[Sadie963]

I have Primary sjs and had very bad lower back pain when I had a desk job with constant stress. I do not have fibromyalgia.

It got to the point where I had to leave the mall after 10min because I couldn't stand the pain in my back.  I tried ibuprofen, heat and some stretching on my own but nothing really helped.

My friend got me to see her chiropractor and he found the muscles severely knotted up in my lower back/hip area.  I had to go back 1-2 times a week for treatment for 6 wks. It was painful but it worked and I felt a little better after each appt.   

Now I make sure I walk more and stretch plus the stress filled job is long gone.

[Sleepy In Seattle]

Oh yeah - this is just a small tip, but it made a HUGE difference for me - keep a pillow on either side of you when you sleep, down by your knees - and when you roll onto your side, place it between your knees. I have gotten to where I don't even wake up anymore to do this! It takes some of the stress off your lower back and hip joint.

[Lesley_x]

I am tortured at the moment with lower back pain which spreads into my butt cheek. I can't bear weight on my leg (for example to stand putting trousers on). I wish I had an answer 

[voiceteacher]

thanks everyone for responding!!  I will try the pillow trick tonight assuming my two dogs will allow it   Perhaps I should put one of them in between my knees LOL.

I would just feel better about it if it at least showed up on xray (:  I don't want people thinking I'm making it up - - - IT HURTS!!

Voiceteacher

[Joy]

Hi voiceteacher, the pillow between the knees is one I have used for years and I found it helps. I am no medic, and as you can see from the responses, there are many reasons why you may have the back pain, but I have had pain in my right hip for years also and tried physio's, nothing, exercise, nothing. I recently went to a Podiatrist and found that I was out of alignment and this caused me to weight bear unequally, putting too much strain on certain muscles and joints. This evening I have picked up some orthotics, which I have been told should 'hopefully' eradicate my pain in 3-6mths as it takes a while for my body to fully adjust. I cannot tell you that this is the answer to your problems, but I was very impressed with the MRI scans that showed how much pressure I was putting on muscles and joints unnecessarily. I will post back on this in 6mths I guess. I do hope that you find out the cause of your problems.

Take care,

[harrigan]

I had a steroid injection into my hip and lower left back a couple of weeks ago.  It didn't work immediately but then the relief was bliss.  Hoping something works soon for you, I know the pain is just miserable xx Ailsa

[MaryBee7]

ISN'T IT GRAND to have fellow sufferers that are just a click away!        I have had 3 steroid shots in left hip and was told can't have anymore because the bursa will begin to break down??  Have degenerative disc disease but you guys...I may be nuts but think it has been a long term Sjogren's thing.  I had back surgery on L5-S1 (laminectomy) when I was just 31!  And I thought I was healthy .... chasing around a baby boy, walking dogs, taking aerobics classes and enjoying life.  Now my cervical spine is not good, with numbness/tingling and fatigue when I sit at computer or do any kind of focused thing for long...found that out by trying to paint this fall, outside, working on a small building in my dog yard.  Yikes-ola!   Steroid shots are sooo wonderful but they don't last.  Rheumy touched my hip at first exam and I about jumped out of my skin - it was so tender.  He said "bursitis."   

I'm a little slow these days cognitively ... but if we have Sicca Syndrome, then is it not "drying" out our spines...sure sounds like it by our posts on this topic.   P.S.  I'm getting a cane, because I live alone and need to grocery shop...and less pressure on left hip is welcomed!

[Jenny]

I too have low back and hip bursa pain. Also now my cervical spine is shot. I had an artificial disc placed in my back at L5S1 when I was in my 40s due to the disc drying up and I was bone on bone. Now the disc above it is killing me. Not sure if it's all Sjogrens related or not, but it does seem like a lot of us have spinal issues.   As far as the hip bursa, I had two injections which were miracles. The pain is almost gone!