It's been a couple of years but my feet are playing up again. They ache on and off - the balls, across the tops of my toes; they are colder than normal but then feel hot at other times; and I periodically get what I think must be cramp - suddenly one of the toes on my left foot gets 'stuck' right out at an odd angle, jammed up against my little toe and there is a lot of pain for 10/15 minutes until it resolves.
Is this a Lupus thing?? Does anyone else experience this and have any tips?
I have something similiar i get a lot of pain jn my feet sometime crap like pain also sharp shooting pain and my toes go very rigid I also have lupus but only recently diagnosed so not sure if it related.
Would be good to get a better understanding
I have had the pack from the group but it seems we all have somethig different going on lol
It's not much fun, is it? Hopefully one or more members of this forum will shed more light on the issue.
Yes Mrs mouse, I too have Lupus and I get very bad pains in my feet.
I do have osteoarthritis in my knees and my doctor said that its now spread to my feet, but arthritis is part of lupus so yes I think it is connected.
I do have the steroid injections in my knees but I'm not sure if they do them in the feet.
I hope this might help. Xx
Your description sounds similar to symptoms I've been managing all my life. Full diagnosis of my version of this has taken years....and when the NHS finally realised I've been managing infant onset sle with only what amounts to emergency meds, this led to breakthrough diagnoses all over my body, including full diagnosis of the complex issues causing my chronic feet & legs symptoms
For what it's worth, here are the conditions causing similar symptoms in my feet & legs (and also my hands, face):
-tendon tightening due to untreated chronic sle inflammation denaturing tendons in my legs & feet, especially calves, forefeet & toes
-Simultaneous raynauds (the cold sensations) and erythromelalgia (the burning), with peripheral neuropathy
-hypermobility ligament laxity causing excessive wear & tear of all tissues
-osteoporosis & high arches resulting in weakened bones collapsing in forefeet
-mortons neuromas & bursitis casing nerve firing & severe forefeet joint pain
-Osteo arthritis in forefeet & toe joints
-agonising cramping caused by all the above
The treatment plan I'm on for all this has been constructed through multi discipline consultations with podiatry, rheumatology, orthopaedic surgery, pain clinic, osteopathy. I wear bespoke full foot orthotics all the time, I do a daily physiotherapy regime, I've had steroid injections, but most important: the systemic treatment begun 4+ years ago when my version of lupus was recognised includes hydroxy + myco + prep tapers which have allowed my tightened soft tissues & joints to respond to all the rehab physio.
My impression is that lupus Drs are quicker to recognise tendon tightening in the hands than they are to recognise tendon tightening in the feet. I'm 61, and I've had to wear bespoke orthotics + have had weeping chilblains & numb forefeet since I turned 20. it wasn't until the early 2000s that the progressive debilitation of untreated sle had finally manifested in truly appalling unmistakable symptoms & lameness in my feet...but even then it wasn't until 2010-11 that rheumatology finally recognising the underlying lupus...and even then none of my multidisciplinary consultants spotted the tendon tightening until I travelled across the country to see a tip top orthopaedic surgeon who immediately recognised tightened tendons was the missing piece of my diagnostic jigsaw puzzle....2 years later, I still have to conscientiously manage the chronic complex conditions affecting feet, but, hey😄 I can stand walk without a cane & haven't used a wheel chair for several years, and cramps happen only now & then
I've gone into a lot of detail....hoping something in this can be useful to you, mrsmouse, and also to others on our wonderful forum
Wishing you all the best as you figure out your version of this sort of thing
XO
Barnclown, the info on tendon tightening is very interesting to me. I was diagnosed in July 2014 but I believe I was suffering with symptoms starting 2.5 years before that.
I went on Plaquenil (300 mg per day - split dose). In late September 2014, I began having issues with pain in my right elbow. In October, I saw my rheumatologist and she prescribed Voltaren gel. She said it was tendinitis. I also began wearing a brace to stabilize my wrist and forearm.
By January, the pain got really bad so I went to see a Sports Medicine Doctor. He did an exam and said that yes, tendinitis, and that because of my lupus (I also have Sjogrens), it was doubtful that I would fully heal and that now it was all about preventing further damage. He gave me a cortisone shot, which instantly removed the pain, and instructed me as to what I could do and what I should NOT do to aggravate the condition. He gave me a brace, similar to the one I had been using, and told me to wear it all the time and to continue using the Voltaren gel.
I did what he said, trying to be very careful with what I did with that arm (not easy to do since "normal life" means I need to use my right hand/arm) and did pretty good until the effects of the shot wore off (~2 months time).
I go back in 3 weeks to see the Sports doctor but each day I deal with the pain of my right elbow. It prevents me from doing all the things I want to.
I've always suspected that my lupus has something to do with this but no one has confirmed this. Your post is the first I've read about "tendon tightening" and its relation to lupus. I try to be very fit and active so it isn't like my muscles/tendons weren't strong to begin with. Docs just said it was an "overuse" injury which I never agreed with.
So, will I ever heal? What is the best way to treat my tendinitis since I have lupus? Are there any information/links that I can read on this and perhaps, educate my doctors so they can treat me properly?
With everything else I'm dealing with, this issue is currently the one causing me the most frustration. I like to garden, cook, craft, weight train, use power tools, etc. and right now I'm unable to do any of those things without pain.
Take care.
Am feeling for you big time, milk woman
And, up to a point, I can identify with your version of this. E.g. As I understand it, my decades of severe chronic pain due to spondylosis also were partly caused by tendon tightening throughout my spine, shoulders & back, which resulted in decades of severe chronic pain, which was aggravated by repetitive strain
My sjogrens is also apparently a significant factor in all this...high dose vit D & and a mainly antiinflammation diet were prescribed by my pain consultant & approved by rheumatology..l think these do help...
As I see it, tendinitis is different from autoimmune inflammation caused tendon tightening (foreshortening), but in some cases repetitive strains can involve an evolving progressive tendon tightening caused by autoimmune inflammation segueing into tendinitis. AND if our ligaments are lax globally due to a hypermobile syndrome (I'm ehlers danlos type), repetitive strains seem our destiny: whether we're fit & active or not, we are increasingly predisposed to repetitive strain. Add sle in to the equation & these predispositions are even greater
My understanding is that we need to break this cycle:
-diagnosis by a multi discipline team is the most thorough type (a really hot ortho surgeon like the hero I travelled to see will not be biased towards a surgical solution, and a really good consultant in pain medicine will know who to refer you to...this is how I found my hero ortho surgeon...but the process took 8 (!) years and I suspect this was cause I was a wee bit too submissive)
-if a particular joint is a focal pain point, consultants must look at the bigger picture in order to specifically analyse the dynamics involved in the creation of that pain...
- the possibility of CRPS must be considered
-Systemic prescription meds are needed to reduce the lupus autoinflammation which denatures soft tissues and enables osteoporosis
-cessation of any repetitive strain trigger activity needs to happen pronto
-the right orthotic supports need to be used conscientiously
-the right sort of phased rehab programme needs to be instituted and complied with
-treatment may include steroid injections
-surgery of some sort may be appropriate
Etc
You sound to me like you know all this already....I think you have the motivation & intelligence to step by step sort this out...in my case, I had to dig vvvv deep in order to succeed as much as I have...and my predisposition to all this has not disappeared: I deal with it on a daily basis....especially just now while rheumatology & immunology are having to reconsider & re figure my lupus treatment plan re sinister gammaglobulins stuff that cropped up earlier this year.
I hope this reply gives you what you feel you need. Feel free to pm me if you'd like to go into this further. This is one subject I sort of know something about...and being able to make a diff for others on forum means a lot to me
Thank you for the detailed explanation, Barnclown. It has helped me to do some further research. I guess technically, I have lateral epicondylitis (tennis elbow) and it does seem to be something lupus patients can experience. From what I understand, lupus (and other autoimmune diseases) can do many things to our connective tissues. (1). Lupus can denature tendons, making them weak and more susceptible to injury and (2). lupus can attack the synovial membrane around tendons, making them weak and susceptible to injury.
The Sports Med Doc I see is a pretty fantastic Ortho surgeon so I know I'm in good hands. He treated my broken foot 4 years ago and that healed completely. I know when I go back in 3 weeks to see him (if I last that long....I may have to call and see if I can get a sooner apt if the pain gets worse) he will talk to me about what I can do next. We tried the cortisone shot (which worked but was short-lived) and I know you can only get so many of those in a certain time period. I would like to avoid surgery if I can. I also want to talk to him about tenosynovitis and how that differs from lateral epicondylitis.
I'm just tired of being in pain and not being able to do what I want. It is now Spring here in the Northeast US and I can't get out in the garden and do the usual pruning and cleanup that is necessary. I tried some pruning on one day and that brought the pain back big time. So frustrating !
I was so brushed off in the beginning - back in Sept when the pain started - that by the time I was really hurting (in January), the tendon was so damaged that now it just may take a really, really long time to heal. Hard to accept. Lupus seems to be accepting a life that if I want to just sit around and do nothing, well then, I'll be fine but if I actually want to LIVE and DO normal things, I have to wonder what consequences will I suffer. All the while doctors look at you like you are doing okay because you aren't in constant pain and your "numbers" look good. Then there are the meds that have the potential of causing blindness - and that's the safest med! I'm glad I'm not on others that have worse side effects.
Sorry I digress.
Thank you once again. If I have any other questions, I'll be sure to PM you. 
I like the way you analyse this.
I think you're a lot quicker on the uptake than I've been. Everything you're saying makes total sense to me. I think you WILL recover from this, slowly but surely. Hang in there!
I really think we can recover from these things, but recovery seems to me to rely on a well constructed treatment plan and compliance + a good medical team....plus a good dose of luck, and plenty of ...patience + perseverance...but you know all this already.
Hoping to hear how you get on..take care
(Aren't these belittling names like housewives knee & tennis elbow just plain silly applied to lupus patients who are dealing with multi system conditions all the time)
Good Morning (well, here in the US), Barnclown -
First - You give me lots of credit! Not sure it is warranted. 
Second - I've just read your profile. WOW - you've had to deal with so, so much in your life. You are AMAZING to have remained sane and positive and so willing to help others in need. Bless you!
I know my orthopedist will tell me to stop doing things I shouldn't. Everyone expects me to simply sit around and do nothing. What kind of life is that?
I'm fighting acceptance of my predicament, that's for sure, but as time goes on, I can feel my fight waning. I don't want to turn into a sad, bitter person. Its a struggle every day.
Ha! Yes, tennis elbow is so trite! As if I was in my tennis whites playing my usual round before heading off to tea sandwiches and cocktails! Oh, what a life I lead! Sigh.
Last night, I had such pain in my arm, radiating to my hand. I did nothing to aggravate it - was simply lying in bed. Something is definitely going on and I will have to be more adamant at my next apt with ortho. I don't know his expertise in treating lupus patients so I may need to find an ortho that is well versed.
I've even thought about acupuncture. Was reading a few articles that say it can be treated and the pain completely eradicated in 4-5 treatments. Finding a good acupuncturist will be key.
Thank you (again) for your information and kind words of support.
I will try to stay positive. I promise.
((hugs))
Hi barnclown. Many thanks for replying; I will need to take my time to work through/look up what you have said. But I'm so sorry to hear of all your symptoms.
I have read some of your other posts/replies previously and your story is, from what I have gleaned, an upsetting one. Sadly I wonder if it's not all too common. Yesterday I was at the dentist, it's a new lady, and she was telling me that a good friend of hers suffered for a couple of decades with all manner of dreadful things until, quite by chance, she happened upon a doctor who put everything together and diagnosed Lupus and treatment was, finally, commenced.
Best wishes.
You're v welcome! And yes, I think this is what many of us go through. Much of my saga has been upsetting, but I've learned a lot about all sorts of things in the process...and the kindness & good humour of many has lightened my load much of the time. Plus i have family & friends whose chronic health probs seem to me much greater than mine. And for the past 4 + years this wonderful forum has helped me in a multitude of ways....especially re keeping my version if all this in perspective.
Take care...hope you'll let us know how you get on
Lupus foot pain or something else?
Painfull Foot
Chronic foot pain
Tummy issues and Lupus
