One Patient's Positive Perspectives

Lupus' common symptoms

With lupus there are many common symptoms most patients can routinely expect to experience.  Perhaps most mornings it is normal to awaken with joint pain and stiffness, a sense of fatigue that sleep did not relieve, and a good dose of brain fog or general slowness in cognition or mental processing time.  But, then there are the times when lupus strikes out randomly, as is it’s nature, and attacks something unique and unexpected.  For me, the latest development in the symptom adventure is extreme inflammation two years after a severe sprain of the ligaments and muscles of my left forearm and wrist.

Lupus is opportunistic, and when it attacks in a way that singles out something on one side of the body, but not the corresponding opposite side there is usually a history to the area being previously injured or weakened.  In my own experience, there were several interesting complications from sudden onset connective tissue attack around old previously healed injuries.

Foot bone structure

Several years ago, undue inflammation and tendon attack developed around an old gymnastics ankle injury from my teen years.  This resulted in a quick onset of sudden breakdown in foot ligaments, ankle connective tissue, and undermined ligaments that hold the tibia and fibula calf bones together,  allowing these leg bones to separate and slide down around both sides of my ankle. When lupus was in flare, the joint became its extra special target, so a cast was required for months while the ligaments repaired in the weird and unusual aftermath to an old ankle strain.  Thank you, lupus!

Cervical spine

Another time, when I was in a prolonged severe lupus flare that eventually began its first diagnosed attack on my central nervous system, my old neck injury became the target of a special battle.  Inexplicably, one morning 15 years after my head-first flight through a car windshield, I woke up in excruciating neck pain and unable to move my neck or lift my chin.  After many x-rays, CT scans, MRIs and bone scans, the diagnosis was that ligaments and muscles in my cervical spine were suddenly weakened and had loosened, resulting in spinal instability.  Diagnostic tests showed that there were three severely herniated disks in my cervical spine, and one of these was indenting into the sheath of my spinal cord.  Spinal stenosis and other arthritic problems in these three vertebrae were also diagnosed, involving areas in my neck that were previously stable for the 15 years since the car accident.  Although my doctors did not all agree that lupus was to blame, it was clear to me, my physical therapists and some of my physicians that the weakness and breakdown of the stability of my spine was too coincidental with the lupus flare to be unrelated.  After two extended courses of neurological rehabilitation, followed by a slow, several years-long restrengthening program to rebuild my neck tendons and musculature, this area now is no longer severely symptomatic.  Thank you again, lupus!

Now, my left hand and wrist is acting up in an area that I sprained over two years ago.  While walking through an airport during a trip to visit my father, the wheel broke on my suitcase and severely wrenched my wrist as the luggage twisted and pulled its weight against the hand pulling it.  As a result, I had a painful acute sprain of my wrist.  I iced the injury on the airplane, but proceeded to spend the next few days scrubbing and cleaning out my father’s house in preparations for its sale.  Meanwhile, my father was hospitalized for eight weeks trying to stabilize his health enough to allow for him to fly home with me to move into an appropriate level of senior care.  For the past two years, this injury has plagued me with swelling and pain in the wrist, and now is getting even worse.  After two years, several x-rays, three different doctors, three different types of wrist splints and braces and four steroid injections, the ligaments are still acting up and getting worse.

A similar type of one-sided inflammation caused my plantaris tendon to rupture, ripping away from the place it branches off of the Achilles tendon in my calf.  This was an unexpected and painful interruption to a great game of laser tag during a work team building event several years ago!  Thanks again go to lupus!

Wrist tendons

Some of my doctors seem to agree it is not de Queverain’s tenosynovitis, since it involves the tendon beside the one that causes de Queverain’s syndrome.  Also, the inflammation and injury seem to focus on the facets and connective tissue connecting the scaphoid, trapezius and trapezoid bones, forming the base of my thumb joint.  In the tiny triangle space between these bones is the repeated steroid injection site.  Now, the inflammation and tendon involvement has spread up the extensor pollicis brevis tendon (not the extensor pollicis longis responsible for de Queverain’s syndrome) into the top of my forearm above my wrist.  I have painful swelling in this defined muscle and tendon that starts on the top of my mid-forearm, and terminates on the top of my index and middle finger.  Once yet again, thank you lupus!

Perhaps as my Benlysta infusions bring about improvement in my overall lupus symptoms, this newest tendon inflammation problem will resolve itself.  However, if not, the doctors all are expecting that I will need hand surgery sometime in the spring.  In the meantime, I hope and pray that this latest of lupus’ “special attention” to an old injury will quiet down as my health improves in the coming weeks of treatment.


Comments on: "Lupus and inexplicable connective tissue inflammation" (10)

  1. […] 5. Lupus and inexplicable connective tissue inflammation – December 2, 2011 – 1,657 views […]

  2. James Groover said:

    Just came down with a serious Extensor Indicis and Extensor Digitarum (sp.?) this week, But thanks to this page for at least letting me identify what it is that hurts and why it does.
    See, years ago I had a cyst removed from my wrist, and the doctor cut and resewed the Extensor Indicis in process, now I can hardly feel my fingers on my pointer and middle. but that also means all the time I get wrist injury. By looking at this I also identified the issues I am having with my other hand that has the injury of my Extensor Digitarum, and Indicis so I can apply a wrap and try some light duty to help it heal.

  3. So good to hear I am not alone with all the strange symptoms!! Mine don’t seem as serious after reading about some online! I’m 72 now and had this since about 20 years old. From time to time I get some annoying and/or painful symptom and it lasts for about 7 months and then one day it is just gone!!! A year ago my left knee just froze into a sitting position. I could straighten it but to bend it further back was just plain impossible. This had gotten a bit better but still not well-all tests showed NOTHING wrong with it. Another time is was my Achilles tendon and it was unbendable for about 7 months and one morning it was gone! As of a week ago it is all my joints-not the joints but the connecting tissues. Both knees, both elbows, wrists and hands – it comes and goes at time almost impossible to sit or bend or pick something up. And then there is the occasional rash. I feel like I am always whining about some physical malfunction. ALEVE actually helps some. I still walk, light workout and try to do all normal activities. I just cannot let this stop my life.

    • Connie: Thank you so much for visiting my blog and sharing your story. You really have the right idea about keeping moving and not letting Lupus stop your life. Best wishes to you! LA

  4. Oh, sorry, you can reach me at and my blog is at 🙂

  5. Hi, nice to meet you, I’m Julie. I have SLE and cervical spine issues as well. I have OA, cervical splondlyosis with herniated discs and bone spurs impinging on my spine at C4 and neural narrowing. I’ve been treated with rfa’s, pt, cortisone for years. Same thing…docs say it’s birthdays, which the oa is of course, but I have recurring temporal arteritis, trigeminal neuralgia, geniculate neuralgia, bells palsy 3x, (multiple cranial neuropathies) and it is MY OPINION that lupus has attacked and inflammed the tissue in the area and the blood vessels which has caused the neuropathies or at least is partly to blame. My pain mgmt doc agrees and he has been giving me rfa’s for yrs now. It’s gotten so bad that my new neurologist (I”ve had peripheral neuropathy many many years now, dx with SLE 2010) has sent me stat to a neurosurgeon this week. I’ve now got incontinence, gait issues, and numbness in my occipital.
    I’m also prone to bursitis and inflammation in my hip. I’ve got a heck of a case of plantar fasciitis so I know lupus likes to go after the bursa, etc.
    I had a TIA end of June, been on Cellcept since and am SO MUCH BETTER now. We have similar stories. My new neurologist thinks I’m having seizures during my TN attacks, but I’m not convinced it’s more tonus than a seizure. I’m awake and consious. Anyway, nice to meet ya! I can’t wait to check out your blog! I have one too. I make lupus awareness videos too. 🙂 Love and HUGS, Julie

  6. I think it’s because I am the patient that I lack the objectivity to wrap my head around this, Initially, I had a dx of primary SS. Then about 10 years ago. that diagnosis was a ‘switched’ to primary lupus with 2ndary SS when lupus was diagnosed.

    Saw rheumie a few weeks ago who said that right now, the SS was more active than lupus and that diagnosis switched AGAIN. He said that this was common w/ MCTD; the disease ‘morph’ a lot.

    Thanks, Annie

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