Lupus is the tendons??I only learned this from a comment my DR never told me,

Lupus is the tendons??I only learned this from a comment my DR never told me,

I thought I was insane when I would try to explain to my family how it feels like your tendons are being pulled tighter and tighter.But thats exactly how it feels.I had the butterfly rash when I 1st went in as well .He said thats a main tell sigh of lupus.I guess they dont know how to inform you I'm really glad In joined this forum.I learn much more on here than I do with the doctors. What i really want to know if what the heck is the best thing to ask for for this pain in the tendons.Like is there a pain medication spisifiacaly for this pain because I can hardly walk now.When I have a stone I take norco whcih is a very strong pain reliever and I feel so much better on that. It helps a lot but then when the stone passes I'm off that medication again.I don't know if I should go to pain management and see what they can do.Last time before they knew I had this they had me doing physical therapy it made it 100 times worse so i'm afraid of that.I'm drawing again to keep myself from thinking too much.

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  • Hi Julietsmombless2015,

    Judging from your comments the tendon involvement is causing pain in your feet and legs? Inflammation can affect the joints, tendons and ligaments in the feet and/or ankles causing the arch height to reduce. An indication of this is if the heels of shoes wear out heavily or the upper of the shoe becomes distorted. People may report pain or aching associated with these changes even though there are no obvious signs of inflammation or swelling. Because it is hard to rest the feet and the body's weight is on them, these structural changes can become worse over time. This deterioration can be prevented or halted if the inflammation is reduced (through medication) and the structures of the feet are supported (with insoles and good footwear).

  • Paul has given a good explanation of how SLE systemic inflammation can cause tightening in the legs & feet.

    I am a classic example of the disabling effects of progressive SLE tendon tightening in the legs & feet.  Your description of what this feels like is what I've been living with for decades.  

    Paul is right: it is vital that those of us affected by SLE tendon tightening are on effective systemic lupus meds. My infant onset lupus diagnosis got lost when I moved to the uk at 21.  So my tendon tightening went without effective systemic treatment for 30+ years until a brilliant rheumatologist recognised my lupus & started treatment.  By then I was unable to walk or stand for more than a few minutes...and at times not at all.  I was relying on canes & wheelchairs.  BUT all my life I had conscientiously seen podiatrists & invested in bespoke insole orthotics + sensible footwear.  All that time, these VVV excellent foot experts didn't spot that tendon tightening was causing a version of equinus contracture, which in turn  was combining with SLE + raynauds simultaneous with erythromelalgia to create Complex Regional Pain Syndromes in my forefeet (with mortons neuromas + bursitis in the metatarsals).  I struggled with increasingly severe disability for 7 years before all the forces involved in this jigsaw puzzle of disability & pain were thoroughly diagnosed.  One reason full diagnosis of my tendon tightening was delayed even after my lupus meds began 5-6 years ago, is  that I am globally hypermobile and the ligament laxity associated with my hypermobility disguised the ferocity of the tendon tightening.

    Anyway, aside from conservative measures like bespoke insole orthotics + sensible footwear, the most important things reducing my tendon tightening disability & pain are my daily lupus meds and my physiotherapy  tendon stretching rehab routine.  I've been conscientiously practicing this rehab regime while my meds have been loosening my tendons enough to let them release enough to allow me to walk & stand again unaided....which feels miraculous!  But it's true: I can really walk & stand again with hardly any pain and I have hardly any cramping (.which had been awful at night for years).  I have posted on this forum at length about this physio rehab regime over the years.  If you're interested in more detail, please let me know & I'll reply with links to the discussions my posts got going (a link to 1 of those discussions is below under the 'related posts' heading...only 11 days ago another forum member had replied  to this discussion, which segued into me adding an update to the discussion)

    Wishing you all the best with this.  Am glad you're here

    🍀🍀  coco

  • Hi coco, I was told that my right hip tendon was close to tearing when it was first injected, my left not as bad, but not sure if tendon tightening is the same thing or not, I wonder if some stretching would help with the pain as I am only allowed three injections in each full stop after that I can't have anymore, already had two in right and one in left the relief only lasts for three months. I am going back to see the specialist to see if I can go back onto steroids for a while (something I wanted to avoid) but I can't see how I can keep going in this pain. I was also told that there is an operation but not greatly successful in the hip area. Any advice would be welcome.

    Take care noonoox

  • i wish i had more experience of tendons in the hip/lower back....if i had, i might feel more confident about replying to your v interesting questions, noonoo. 

    my gut instinct is saying: probably best to see a senior physiotherapist about these questions, and brief him/her thoroughly re your connective tissue conditions/treatments.  Because you already have a clear diagnosis of this aspect of your condition, this sort of professional should be well placed to advise you.

    however, i do have some experience of chronic myofascial (soft tissue pain e.g. connective tissues in tendons, ligaments, muscles) tightening in the lumbar, sacral spine due to chronic sponodylosis (osteoarthiritis & facet joint syndrome) which did effect my hips too, and my glutes. 

    so, for what it's worth, here is what helped me enormously to damp the pain and stiffness related to my version of tendon/soft tissue tightening in the lower back/hips:

    -Pain Consultant bilateral lumbar & sacral facet joint denervation operations

    -followed by rehab in the form of the deep dry needling called IMS: intramuscular stimulation: only practiced by specially trained & certified healthcare workers - usually physios, GPs, osteopaths...here is an info link:

    ubcgunnims.com/what-is-ims/...

    -postural training by an Alexander Technique teacher

    -core stability training (via yoga, pilates, tai chi)

    -my daily lupus meds antiinflammation action

    -antinflammation diet with plenty of hydration + D3

    -afternoon 'horizontals': lying down with a cushion under my knees for at least 30 min daily

    -seat wedges & lumbar supports made of memory foam (I always use these at home & in the car) & sleep with pillow between knees

    -thermacare lumbar heatwraps: the best when i've actually been in spasm down there

    hoping you & your medics figure this out before too long...are you seeing a Pain Consultant about this?  I'm so sorry to imagine the pain you are toughing out

    xoxo coco

  • Hi coco, I have just lost my reply pressed submit and it cancelled instead. I will reply later as my dog needs my attention and she is stopping me from doing any work until I play with her r at least a cuddle. Speak later.

    X🐶

  • No rush!  No prob 👍😘

  • Hi coco, sorry about yesterday, we think my little one is going through a phantom pregnancy, first season, she will not leave me along and wants cuddles all the time. 

    I think once I see the specialist and talk about the tendon issue then I will be clearer on what can or can not be done to help me. 

    I was to start my Paleo diet but they recently scanned me and my Gallbladder is inflamed so I am doing a Gallbladder diet to settle it down and then on to that diet, if it doesn't suit me I think I will just devise one for myself by elimination process.

    With regards to vitamins I take Magnesium, Multivitamin for over 50's, cod liver oil and Spatone iron water mixed with orange juice. I will speak to the doctor about how much D3 to take as don't want to over do things. I read so many different reviews on D3 and how much to take and slightly confused so will leave till then.

    The Alexander technique is something I am interested as I have heard its good for your posture and mine is poor. I use a lumbar cushion in my desk chair and my armchair has allsorts to help me sit upright. I go to bed with a pillow between my legs as the DR who does the injections said it would ease the pain in my hips at night. The injections I have had two in right and one in left hip and I am only allowed three in each and then that's it. The operation is not very successful to repair the tendons in this area.

    Somehow I need to find a solution.

    I am now off to see the healer, I do get some relief form healing but it's not a cure for this.

    Speak soon,

    Love and hugs, noonoox

    Ps birthday tomorrow so going out with my mum if we are both well enough. 🐶

  • For tomorrow: Happy birthday noonoo 😘💐!

    Your poor little one: give her a cuddle for me, please

    I like the way you're thinking!

    You're right: a good discussion with your specialist is going to make all the diff...hope you'll let us know how that goes

    If you're taking cod liver oil, that gives you omega/D type supplementation, which is good

    Good luck with figuring the best way of eating for you: sounds to me like you're almost there. Am so sorry your gallbladder is acting up badly

    I forgot to include the pillow between the legs when lying down: thanks for reminding me (have added it in to my earlier reply): this has helped me A LOT too

    🍀😘 coco

  • I have this issue as well. I was dxd with tenosynovitis and had the synovial sacs removed in my wrist. Now I have it in the tendons in my ankle and knee. I can't find a Dr to treat me. I live in South Carolina,  USA and it's difficult to locate drs familiar with Lupus. One recently put me on Plaquenil.  Hoping it helps.

  • I found Naproxen with stomach protectors the best when I had severe tenosynovitis in my ankles a few years ago. Twitchy x

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