Hey y’all!!! Now that I’ve recouped from family matters, I have yet another surprise.
Been having low back pain for about 3 yrs. Managed with PT and NSAIDs for almost 2 years. Beginning of this year, pain just wouldn’t let up so I asked for meloxicam. Meloxicam worked amazingly well but was nixed after my kidney function declined and liver enzymes went up (what’s new). I was instructed that I cannot use anything more than Tylenol. I was offered muscle relaxants which I declined because they make me sleepy and I don’t feel I’m having muscle spasms.
Go to pain mgmt. They order X-rays. We all think it’s SI joint dysfunction. Come to find out that I actually have severe degenerative disc disease with vacuum phenomena at L5-S1. EMG is scheduled because I have been having leg weakness with elevated CK which was attributed to lupus.
So I message rheum and she says go back to PT but I already maxed that out. I exercise and stretch everyday and the pain does improve with movement. But it’s just worse now and isn’t getting better.
My question is, would it be appropriate to push for an MRI? I feel like I’m too young to be have severe DDD. Never had an injury, been overweight or pregnant for my back to be stressed like that.
I feel like I might have an axial spondyloarthropathy on top of lupus. I do get enthesis and have been hyperthyroid in the past. I know y’all have been in my boat before and just wondering if you have any other suggestions?
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Sorry no suggestions but diagnosed and first op after 2 yrs In wheelchair for ddd in early 20s , I was told so sorry your very young to have this, so I guess never too young though soz I don’t know your age 🤗
I am 36.... pain started at 33. Never too young but still seems more pathological than wear and tear with no injuries. Agree that pain control will be paramount and I’m on top of that. I actually was approved for medical marijuana since NSAIDs are a no go for me. Pain said they would do injections. They did order an lumbrosacral MRI for me which is more than my rheumie did.
I wonder if it’s axSpA more because it can be mitigated and even stopped by anti-TNF inhibitors. I’d hate to have irreversible damage done that could’ve been addressed earlier. And it’s not that hard to test for IMO esp since I already have DDD on X-ray.
I just saw this and thought I have some analogies, though I am 70+ years old. I now have severe lumbar and cervical DDD, but this after 25 years of active HLA-B-27 positive SpA and RA overlap with Sjogrens. I was on TNF inhibitors that helped and then had to discontinue because of blood changes--MGUS. Recent MRIs and a myelo CT scan helped my specialists to discern differing changes in my spine. This was done because I had L4/L5 spinal fusion in 2019 but still have leg pain and severe neuropathy. Are you able to just request that your rheumatologist do more probing testing? I was lucky to have a very smart neurosurgeon: my rheumatologist is tentative at best. The EMg is not a bad idea IMO. All the best.
Hi Joaclp. Thank you so much for the response. Interestingly my father also had cervical spine issues at a young age requiring surgery. We’re kind of like medical twins except he’s male so most things seem more mild on him. I do get horrid neck and mid thoracic back pain intermittently. My neck crunches like popping popcorn. I’m not completely convinced all of my pain is from DDD because my hips have never hurt so bad that I can’t even pivot/twist at my waist.
I came out and directly asked rheum if it could be nr-axSpA and she said unlikely but she’ll order an HLA-B27 test and sacrum MRI. Pain ordered lumbrosacral MRI reflexively. I guess I advocated and got what I wanted. But I really don’t think it unreasonable esp given family history. I’ll keep you up to date with what is found. Thank you so much for replying. It was so helpful!!!!
Hey! Knowing is better than all those things that go through your mind when you don’t know, which I’m sure you have experienced in this journey we all take to diagnosis - I say go for the MRI! Better to have too much info than not enough. I have severe low back pain and but for my recent MRI I wouldn’t know that I have bilateral muscle edema, bilaterally. It is a severe case - so I’ve had to adjust my treatment. Not what I expected, but better than what I thought it was!!
Thank you so much Loti! Makes me feel better about wanting to know. I will be getting an MRI after requesting one. Sorry to hear about your ordeal. Muscle edema sounds super painful. Glad it was better than expected but geez....still sounds uncomfortable.
Thanks so much for sharing and supporting me!! I’ll keep you up to date with what they find. ❤️xx
Thanks Kay! I am in possession of low dose clonazepam/Klonipin but no valiuum. Never really had any problems in MRIs even in head cage x2 for brain MRI. I always reject benzos and muscle relaxants when offered. I’m really bad about this.... somewhat masochistic to an extent. I’d rather be wired and hurting as opposed to sleepy but comfortable. Also, movement makes my pain better which makes me think back pain must be at least inflammatory.
Thanks for the kind words. This on top of lupus feels like a cluster F because treatment for one is not great for and can flare the other. Always good times with autoimmune disorders. Gotta love em.
I think the game Never Have I Ever could be played amongst us CTDers with all of our rogue symptoms. Trying to find some humor in my situation because there is never a dull moment.
How are you? Anything new or everything stable these days?
You know what to take get you through the test. I had to be pulled out of my first MRI - costly to the hospital and not fun for me. Now I know what machine to book (you’d think I was going on a cruise) and to take plenty of sedative.
The report was good from a vascular stand point - unchanged. But this doctor wrote « «micro vascular ischemic disease, CTD, aPL, migraine for indication. I never knew that was my diagnosis. Actually just thought I went to her for stroke prevention. So that has been upsetting. The good news - chatting with Barnclown about this - is that statins seem to help with this small vessel stuff. Maybe I am a good example. No change since she put me on them five years ago. Trying to look at this as the good news. Also have intracranial hypertension, which she didn’t get too excited about. So I am trying not to either. 😅 I got the results late one night before the doctor called. Dr Google was not a good idea. 😫
Thanks for asking. Feeling pretty good overall. Just a little shaky about the neuro issues.
Kay, I think this is good news for you! I agree that aPL causes micro vascular disease. Some ppl get small white matter lesions of the brain that are benign but are associated with aPL and brain fog. Statins esp atorvastatin have definitely been touted as wonder drugs for preserving cognition esp in the elderly so I could see there being data about its use in aPL without APS.
Intracranial hypertension is common and not super worrisome unless your vision is blurry and they find disc edema on optho exam. That requires a lumbar puncture to reduce pressure. Otherwise, many live with it and never need therapy. Some wind up on a acetazolamide which helps decrease pressure if they have recurrent bouts of headaches and/or papilledema.
I’m so happy that you are feeling good overall. Sounds like your docs are still chipping away at stuff and that’s good to hear. Sending you many hugs.
Definitely will update thread when I get results. ❤️xx
Well, I’m a bit late to this party(I was actually celebrating my daughter’s 30th and then recuperating 😆) but...she is actually going through similar and had just had her neuro order an MRI. She isn’t Dx’d with lupus but has numerous other issues (eczema, ASD, suspected hEDS, BIL lower limbs CRPS etc). She has been to n PT since May and now has unilateral goosebumps and other freaky little symptoms besides pain. He has also scheduled an in person appointment afterwards and said if the results aren’t good will be referring her to a neurosurgeon.
All that to say, you need a scan to know. Knowledge is power: Power to make the proper decision for care; Power to prevent future injury.
Thanks DR. Got things set to go. EMG and MRI lumbrosacral and full sacral scheduled for next week. Rheum agreed to also check HLA-B27. Also probably go back to PT. Squeaky wheel gets the grease again. Sorry hear about your daughter. I hope she finds answers and relief soon. Hope she had a good 30th birthday!
👍🏻🤞🏼....my daughter’s birthday was fun but exhausting. We did the “coffee train express”, which consisted of a week (yes, a week) of desired coffee/bakery places all over the metro area culminating with all the free ones on her birthday. Then she had a race the next day. We had the last piece of tiramisu from Montelupo for dessert tonight. I’ve had enough cake 🍰 to last for quite some time.
Glad you are getting what you need. It was actually my neuro Wizard who ordered my HLA-B27, not rheum (rheum d/c’d me early on) but I ended up being negative. Please keep us posted!As always, only the best for you! 🍀😘💐
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