Does anyone know for certain if it's possible for lupus to affect the spine at all in any way?
I've been diagnosed with lupus, but also have severe spine problems. My spine has actually been getting worse & worse and causing more grief than my lupus. Supposedly I have OA in my lumbar & cervical spine, hips and ankles. But aside from the OA arthritis, I keep getting flare ups of SEVERE nerve pain, severe back spasms that spread, muscle cramps, and flare ups of severe, deep bruise like pains in parts of my spine. My spine many times times feels severely inflamed. Sometimes it's in one area, other times another, sometimes in most areas of my spine. I know I have the OA along with lumbar and cervical stenosis and many disc herniations, but Im not sure what some of the flare ups of deep bruise-like pain are that I get. I know my rheum had once suspected AS, but I guess he ruled that out b/c I didn't have any fusion on MRI in my sacroiliac joints....however I do have sacroilitis. On top of this, I've recently been getting flare ups of tennis elbow and pain on the top of my right foot where the ankle meets the bottom of the leg. Both of these keep coming & going. Many times the deep bruise like inflamed feeling will appears in my sacral area....and it is extremely difficult to sit, causes such intense pain, though doesn't quite feel like nerve pain.
One thing is...when I take steroids (either orally or injected into my spine) I feel so good. After several days, the rest of me feels so much better as well. It reminds me of times I've taken courses of oral steroids for lupus flares. When the injections wear off though (usually seems like after about 2 weeks), I usually get sudden worsening of spine pain and other joints...sort of like when you taper to a lower dose of oral steroid.
I better get back to my question. Does anyone know for sure if and just how lupus could affect the spine? My former Rheum had told me it does NOT affect the spine at all. I just had one medical professional tell me that it can. I have found some questionable things with my former rheum (so thats why he's former), so not sure what to believe.
Baybreeze, I've also wondered if lupus affects the spine. However, in the only lupus hardcover I currently own, author says that ONLY the upper cervical spine has enough synovium-lined joints for "significant" inflammation.
BUT I think it's possible to have back issues unrelated to SLE. Have you consulted a top-flight orthopedist?
A close friend had years of severe back problems, yet he saw only a suburban orthopedist, had steroid shots, and went to PT. I finally convinced him (much badgering & colorful language ) to seek a 2nd opinion at a metro teaching hospital that's one of the top-rated orthopedic facilities in the U.S. My reasoning to him was, it's your back, it affects everything you do; it's not something small, like a pinkie finger. He ended up having minimally-invasive surgery, with several discs fused and a titanium cage placed around the most unstable portion of his spine. But he'd waited so long that he ended up with some neuropathy in one leg/foot. But, FINALLY, he's not in pain, which is really miraculous, given his total misery in the several years prior to surgery.
My friend's back problems were so bad that they made me feel "lucky" that I have "only" lupus. I'm so sorry you're having such misery & hope you get more input soon. GOOD LUCK. Please keep us posted. Sympathetically, Vee
I don't know if it is the MCTD or the fibromyalgia causing my back problems, but my muscles keep repeadedly straining and even though I treat it with exercise, ice packs, it doesn't want to heal. I am getting the spasms too, numbness and pain running in my neck, jaw pain, and headaches from it. I have nerve problems too, my doctor thinks it's the myalgia but I have to wait for that dx from my rhematologist though I have been dx'd with fibromyalgia for 10 years, I dare them tell me now that I don't have it. I'll have to kick someone's butt. I get all over tingling, numbness in my feet daily, shooting pains, twitches, spasms, burning, my low back hurts alot but I think it's my bladder causing it. I think it's easier for us to get muscle strains in the back, not only because of the disease, but we kind of tend to lay around sick alot, don't we? And our muscles don't respond well to that. You listed one too many valid reasons for back pain. Can they not repair the herniations? I couldn't imagine having to live with a problem like that. Do you lift heavy stuff? That'll do it. I figure lupus could cause the inflammation, it can attack any part of your body, but it probably had nothing to do with your injuries.
Thanks for the replies! I do know one can have different conditions at the same time and I do have OA of the spine in at least my lumbar and cervical spine (not sure about the thoracic area). I also have spinal stenosis in both areas in multiple levels and I've already had surgery for stenosis on my lumbar spine in 2006, but it keeps coming back in the same areas as well as new areas. I just didn't know if the OA would cause most of my spine (Or sometimes just certain parts of it) to feel very inflamed. It's so hard to describe the feeling. Aside from the stenosis and disc herniations, I get flare up of deep, achy bruise-like pain. On past MRI's i've shown edema in my lumbar spine. I can say all my spine problems and pains are much, much worse than any lupus flares I've had.
I've actually been doing PT exercises since before my surgery in '06 to strengthen my core. I am always VERY careful of what I do, I don't lift things heavier than a milk gallon, I no longer weight train, I really don't know why all this keeps happening to me. Many times it seems to happen for no reason, who knows. I have been to a well-known orthopedist, who did my surgery (Rothman Institute) and he's with a teaching hospital. He did tell me beforehand, though, that surgery would not help the arthritis, that I can reherniate, that stenosis can come back in the same place or other places, etc. He did say, though, that all that I had at my age was unusual. The Rheum I was seeing kept insinuating that it was all fibro after I had my surgery. Never even sent me to have my neck checked out. Now I have a massive herniation that's digging into my spinal cord, and the severe spasms I've had and get have actually fully straightened my neck out. Needless to say, I am looking for another Rheum. At least my new Pain Managment doc sent me for all new x-rays and MRI's of everything, all at once and didn't tell me "one thing at a time". My PM thinks, since I've had the injections and they don't last very long on me, that the next step would probably be surgery. He even gave me some Neurosurgeon referrals being I have an issue with my spinal cord being compressed. I'm just so tired of seeing all these doctors, I'm sure you know that feeling!
Veej - you are SOOO right about the back affecting so many things we do! After my spine surgery, I could not believe just how many muscles in your body affect the back..ughh. I couldn't even walk down my stairs for while, the post surgical pain hurt too much. I'm scared about cervical surgery, though. I would probably need fusion as well and they would probably cut me open on the front of my throat. When I had lumbar surgery, I roomed with a girl who had cervical fusion done....OMG, it's so scary.
Baybreeze, I don't know if your back issues qualify for minimally invasive surgery, but that would be my #1 question if I were facing spinal surgery because it can reduce recovery time dramatically. The surgeon who did LUMBAR surgery on my friend went into his spine from his side, as opposed to opening up the spinal area. BTW, my friend also has substantial stenosis in the lumbar spine. Sending you my best, Vee
Thank you, Veej. I doubt any surgery I might have would be the minimally invasive type. My first surgery was major with 3 months of recouperating. I had multi-level laminectomies, foramenotomities, discectomies, and they cut away some of the ligamentum flavum. I've not had fusion yet as my surgeon was more on the conservative side, however he did say I might end up needing one in the future. From what I know so far, I will probably need similiar done in my neck along with ACDF, which I think involves fusion/hardware. It's not only disc hernitions, I have more stenosis in both lumbar and cervical in several lateral recesses and foramen, worsened facet joint thickening, and more ligament thickening and buckling into my canal, etc, etc. as well as 5 disc herniations between both areas; one massive one at C5/C6 and a massive one at L1/L2. Well, such is life....
Baybreeze, my friend had a similarly HUGE mess in his lumbar spine, incl. herniated discs, ruptured discs, spinal stenosis, some sort of arthritic degeneration of the vertebrae, neuropathy, etc. His surgeon removed 4 or 5 discs, fused vertebrae, then installed a titanium cage to support that vulnerable portion of the spine. And that cage saved his spine 15 months later: he was struck by a car while assisting at an accident site, and "only" one vertabrae was fractured, right above that cage. (Talk about timing!)
I think the term "minimally invasive" describes the surgical route to the spine, not to the scope of work being done. It's the cutting thru far less muscle, not having to move certain organs, etc., that makes it "minimally invasive", I believe. (It still sounds profound to me, though!) I believe you'd probably find surgeons who use this newer technique more in the big metro hospitals than in smaller facilities.
I don't think people who've never had back surgery can fathom it. It's so big! That's why, in your shoes, I'd automatically seek a second opinion, even if only one surgical approach turns outs to be possible. Whatever you do, my heart goes out. Sending you my very best, with hugs, Vee
Thanks Veej, I think so, too. I think, for example, laparoscopic surgery, where they only have to make a tiny incision, would probably be minimally invasive. (I'm also thinking laparoscopic versus open surgery for say, the gallbladder. My mother couldnt' have it done laparoscopically b/c her problem was too severe & they really had to open her up, hence long healing time, etc.) Perhaps I might only need that on my neck, but I guess I should really at least consult with the neurosurgeons. My PM gave me two referrals so that I could get two opinions. I'm certainly not going to rush into surgery, though.
Baybreeze, I'm so glad you're considering 2nd opinions & that you have the luxury of time for checking around. It wasn't just the different surgical approach that convinced my friend: it was the amount of time the head surgeon took to explain everything, the well-oiled precision with which the hospital staff marched him thru all-new tests (they did everything all over again, to get a totally up-to-date assessment of where he stood), etc. I think you're the only person who can weigh all the tangibles & intangibles. Do enjoy your weekend. Thinking of you, Vee