Pooh bear (the wife) has SLE and has a small flare at the moment probably caused by the sun. Theres one feature she always gets and we dont know why.
Her shins become really painful in the bone. This is really bad pain so she cannot sleep. Last year she had a really bad flare with highly abnormal blood results that seem to be pointing at a marrow issue.
Thoughts observations gratefully received.
😍Hello again to you both, jimbo 👋👋👋👋...as usual I can only speak from experience of my own versions of calf/shin pain issues & marrow issues:
- re bone-like calf/shin pain: my medics tell me that my early onset chronic progressive tendon tightening has been due to my infant onset lupus & autoimmune comorbidities going inadequately medicated for decades. My tendon tightening is most severe & painful in my lower legs & feet. The pain does kinda feel like it’s in the bones, which makes sense cause tendons are the connective tissue between our muscles & our bones. The daily combined therapy immunosuppression meds rheumatology has me on have slowed my tendon tightening & reduced stuff like shin pain, but can’t stop it altogether or undo existing debilitation, so I also see a specialist physio about managing all that
- re abnormal blood results pointing to a marrow issue: when my rheumatologist found these, she immediately ordered further immunologic bone marrow disease tests + oncology blood tests & special urine tests. And she urgently referred me to immunology for assessment....5 years on, immunology investigations & monitoring have resulted in diagnosis of the bone marrow disease panhypogammaglobulinaemia, a type of Antibody Deficiency Diseases which comes under a Primary Immunodeficiency Disease in my case because it began before I went on immunosuppression meds. So now my lead clinicians are @ both rheumatology & immunology. And immunology has me on long term daily antibiotics + weekly immunoglobulin G infusions (DIY home SCIG now, cause during COVID this is safer than monthly IVIG on infusion ward)
Hope something in there can be useful to you both...do I recall that pooh bear had been seen by immunology some time ago? ...if she had, I can’t remember if that was due to low immunoglobulin blood test results. But other bone marrow elements can be deficient/abnormal in various immunodeficiency disease, and, although it’s rare for autoimmune disease patients to be diagnosed with simultaneous immunodeficiency disease, cases do exist eg me, our shaista tayabali etc ...and some immunodeficiency cases are secondary to various things eg immunosuppression meds, cancer meds etc etc
take care ❤️🍀 Coco
CoCo,
Thank you so much for your reply. You have been amazing with your insights and help for my wife over many months and years now. It really means a lot and my wife and I are sincerely grateful.
For me what is very interesting is that you all seem to have the same unusual characteristics of the disease. For me it shows how far medical science has to discover and develop in understanding the immune system. I remember recently watching the parliamentary select committee (not something I do regularly) on Covid with 3 professors and was truly amazed that in a tiny drop of the blood there are thousands of systems that adapt, react and sense changes in the body. Even more amazed that these 3 leading professors were big enough and knowledgeable enough to admit what they didnt know. This is without even starting to speculate on what they didnt know because they didnt know what they didnt know.
We are all on the frontiers of medical science here sharing experiences not only helps individuals but also collective knowledge of this disease and how to manage it. So to all those who share experiences on this blog and in particular to you CoCo thank you you make a difference to many.
You’re both totally welcome ❣️
& 👍👏👏👏👏👏WELL SAID 🤩 THANKS 💐...the great thing here on our wonderful forum is that everyone contributes such a lot, each in our own way. Pooh bear & you had been thrown in @ the deep end when you joined us here, and every detail + insight you’ve shared as you’ve navigated the diagnosis + treatment process has been & still is & will be helping loads of our fellow 🦓s ongoing
my feeling is that the international crisis caused by this COVID pandemic is advancing our understanding of immune dysfunction & connective tissue disorders by leaps & bounds +, I hope 🤞, attracting more funding & more ambitious, brilliant researchers & medical students to notoriously under-funded & under-staffed specialities like immunology & rheumatology...which is a good thing 😅 cause COVID is clearly gifting the world huge new cohorts of ‘recovered’ COVID patients suffering persistent/ chronic multisystem illness - much of which seems very similar to our sort of autoimmune diseases etc etc.....am on the edge of my seat waiting to see what science makes of THIS 😯🍀❤️
Hey Jimbo. How are you? I remember exchanging thoughts with you when Pooh bear had her last flare.
I wanted to help quell your fear about her chins being from a bone marrow problem. There isn’t much marrow there. More in the hips, sternum and femur (large leg bone).
Painful shins can be any number of things - erythema nodosum, MSK spasms or tendon problems (as BarnClown alluded to), high bone turnover (bone itself, not marrow) from steroids, muscle inflammation. Could just be a one off and a weird symptom specific to her that tells her when she isn’t doing well.
Have you discussed with rheumatologist or GP? Did they have any guesses/suggestions? Do her legs look normal when she gets the pain?
Thank you so much for your reply Jmiller623.
As before you are incredibly well informed - I am you are D'cruz with a pseudo name.
The delay in replying is because we went through all of your causes. The most likely by a mile is bone turnover. My wife has been on high dose steroids and now suffers from osteoporosis. Will talk to our rheumy about this in the autumn.
Thank you for being so well informed and so incredibly helpful
Happy to help Jimbo! I am a real physician with an MD and PhD but I am no Dr. D’Cruz. I promise.
I actually thought about starting a business where I help chronic illness patients with their labs and appts. Maybe go to appts as a translator or review labs and send patients in with certain questions so as to provide better/optimal care. I have always said I don’t know how y’all do it. I’d be so lost and anxious if I didn’t have a medical background.
I hope your Pooh bear feels better soon! Maybe try some compression socks if she doesn’t already have some. I find these make my lower legs feel so much better with regard to both pain and swelling.
Sending hugs your way. ❤️ To better days ahead.
Just an add on...compression socks that are at least 20-30 with graduated compression. I get mine from Wearfigs.com because they don’t trigger my pain syndrome or my daughter’s CRPS and they are moisture wicking. Just a suggestion. Have also worn Sockwells but prefer Figs for all day.
D🏃🏽♀️
Yes! I use ones with 30 mmHg. I wear them 24/7 when I don’t have athletic leggings on. I love to exercise with them as well. They push swelling up towards my core which I appreciate.
Hi!
Just joined and very recently diagnosed been diagnosed with lupus.. so not much advice to offer sorry but found the shin pain interesting. I’ve noticed that whenever I have had what must have been a flare up pre diagnosis that I have tended to have shin pains, something similar to shin splints. I put it down to wearing wrong shoes or having walked more than usual / overdoing it etc at time but I was also very fatigued and had mouth ulcers and aching joints with it. Perhaps it’s a unique symptom to a few of us? 🤷♀️ It’s a puzzling one but I really hope your wife’s flare calms down soon and the docs get to the cause of the blood results that are concerning you both.
Take Care 💐
Mrsgem, many thanks for your reply.
My wife gets mouth ulcers, aching joints, fatigue and painful shins when flaring. She also has her rash on her neck and not on her face.
The more I learn about lupus from my wife and others the more it looks like many diseases and not just one. A cluster of individuals appear with 'atypical' lupus symptoms.
Bit late in the day for joining this conversation, but I have suffered from shin pains since I can't rememeber - interestingly like others I put it down to the shoes I was wearing but having read all this I am wondering if it was a precursor of things to come. I will mention it to my rhuematologist and get their opinion.
I googled it once though and found it is such a common complaint, my mother had it for years (she does not have an AI disease) and put it down to her hormonal cycle - who knows! Please let me know if you get a definitive answer from anyone. Kindest thoughts.
Lupus in the family
In a flare with some new symptoms....
Lupus flare
UCTD/Lupus Muscle Weakness and Bone Pain
lupus flare or long Covid?
