Quick question for the seasoned lupus patients....
Background: I'm undiagnosed and lupus is a possibility that has been mentioned but never committed to by any doctor so investigations are ongoing. I firmly believe I have it and I suspect my doctor does to some degree as well but is wary of saying so yet.
Now for the question...I get serositis (sometimes abdominal, sometimes chest, sometimes mid back...) and costochondritis pains. The pains are occasionally severe but mostly annoying and usually just enough to make me suck my breath in then I get on with it. These bouts of pain can last anywhere from a few minutes to half a day and then move on to another part of the body. I can spend all day in uncomfortable pain with what I think is inflammation taking a joy ride around my body!
Is this the nature of migratory serosistis in lupus patients or does it have to be severe and ongoing and 'set in' to be considered worth any diagnostic points?
One reason I ask is because the first rheumy I ever saw poo-pooed my concerns about lupus saying that "if you had lupus headaches they would be unmistakable severe headaches, if you had lupus joint pain you would have severe ongoing joint pain". Is it true what he says or is it possible to be suffering these individual symptoms somewhat mildly but as part of a horrible bigger picture?
Sorry so long but this question has bothered me for a while and the 'nothing wrong with me' demons have been at me this week and it hasn't helped my self-doubt!
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1985mum
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Many of us on here are familiar with being the in the diagnostic no man's land and it's not a nice place to be. There are many different auto immune conditions out there and there are even more 'mixtures' of these conditions so diagnosis can be very difficult. There are also differences in the severity of individual's symptoms.
I have a combo of lupus and UCTD and can often experience migrating, flitting pain. I also have serositis but, for me, the pain is so severe that I'm bent double. I have a suspicion that I may have other AI conditions in the mix too ie palindromic rheumatism and/or Ankylosing spondylitis but it's been nearly 30 years now so there's no point in trying to pick things apart for me.
Keep a diary and any photos. You may need to change Rheumy in order to find someone broader minded. Hope this helps a little X Clare
I recently attended a Sjogrens lecture given by a senior rheumatologist from my univ hospital clinic. She described a similar sort of flitting pain, saying it's typical of fibromyalgia/Sjogrens overlap. I took note because I've been experiencing this sort of pain as long as I can remember. I've never mentioned it to medics, because my other stuff has been more debilitating etc (oh boy: prioritising 😝 what to mention...)
Clare's put the overlapping thing so well, nothing more I can add
The other day, my husband asked me how many diagnoses I have....I just breathed deeply & exhaled before saying: they fill 1 1/2 A4 sheets in my live 4 page (9 font size) Diagnosis & Treatment document. Am 63. This listing is the result of a lifetime with infant onset lupus + vascular ehlers danlos hypermobility + primary immunodeficiency. My abiding impression is that: up to a point, your first rheumy wasn't wrong in making his observations BUT for sure I'm living proof that chronic immune dysfunction patients can learn to tolerate years of complex persistence pattern multisystem pain etc while convincing themselves that medics are right in saying there is nothing significantly wrong generally. I call my version of this my Jemima Puddle-Duck Syndrome 😉
(I think you know my story: lost infant onset lupus diagnosis recovered in my mid 50s after a lifetime of being told my accumulating multisystem secondary diagnoses were all normal)
Am looking forward to following your discussion
Believe in yourself...log your symptoms...ask questions
One of the most frustrating things is how variable and complex the presentation of lupus-type disease is. My own story began when I developed shortness of breath and fleeting chest pains. I had an echocardiogram and was diagnosed with heart failure and treated with B blockers and ACE inhibitors. It wasn't until I developed Raynauds and joint pain that this was questioned. I then had a cardiac MRI, which showed no sign of heart failure!
Subsequently, I developed further signs of immune dysfunction and my primary diagnoses are now mixed connective tissue disease with interstitial lung disease ("Overlap Syndrome").
However, my cardiac symptoms have also got worse, with a resting heart rate of >100 bpm and a frequent sense of 'straining'. I have been referred back to cardiology, and will have a repeat echocardiogram in a fortnight.
My growing sense is that even our specialist consultants sometimes understand what is going on even less than we do! So, as coco and ClareB suggest, it's a good idea to chart your symptoms and see if you can see patterns that might not emerge from your consultants' questioning.
Good luck!
Hi there I am sorry to hear that a clear diagnosis is proving difficult and I hope that the ongoing tests you are having will help clarify things.
According to the Lupus Encyclopaedia, serositis occurs when inflammation affects the serosa (a very thin tissue that affects the outside of the heart, lungs and abdominal cavity) and causes pain during movements of the involved structures. SLE can cause inflammation of the serosa. In fact it occurs so frequently in people with SLE that is it included in the diagnostic criteria for the condition.
I hope that further testing will help clarify matters for you and also don’t hesitate to ask for a second opinion if you feel that your consultant isn’t helpful.
• in reply to
I wish I was diagnosed already. I am struggling. I don't want to upset anyone. I don't want to be in this body any longer.ive had maximum of 5 days off from the pain in 7 months.my body and mind have had enough. Sorry for hijacking this thread. I just joined today. Before I was scared to die, after the constant pain. Im scared to live
Hello holly. Take care dear...we're here for you...please post your reply on forum: - i know you'll get lots of caring supportive replies. Courage, you can improve things...and we'all be by your side
Thanks 👍👍👍👍 was hoping you'd say this...the medics who help me most diagnose almost all my stuff by physical exam.
My prob with my version of SS + EDS + PID abdominal/peritoneal serositis is that my GP & I've been treating, managing + minimising it for so many years that my brill rheumatologist doesn't get to see it at its worst. But as I've aged & my SS become worse, her opportunities increase 😉
How do you & your medics treat & manage your abdo/perineal serositis?
Thanks for the replies. I understand there are people on here who have horrific symptoms and I feel a fraud for even complaining because all of my symptoms individually are relatively mild and bearable (apart from the occasional severe bout but they are few). The big picture though is that all of these small symptoms (enough to fill one and a half A4 pages in small type!!) put together make for an unbearable existence.
Well put...for what it's worth: I agree & I feel as if I know what you're telling us through & through...this was my lot from the time I left home @ 21 until my lupus diagnosis was recovered 5+ years ago in my mid 50s. Those years were harrowing. Words can only just begin to express just how harrowing. And even now my version of this is better understood & responding reasonably well to treatments, it's still vvv tough. Without this forum, I'd be struggling much more than I am
You have every right to be here & to complain as much as you feel like complaining...we all have this right. And meanwhile, if you have the energy to do this sort of sharing, you're helping too (you've helped me a lot)
I wish you didn't have any of this to bear, but I'm glad you're here and am wishing you success in understanding & minimising your stuff
Sorry to read your still having diagnosis problems despite getting serositis type pain!. I too have it but have found that it stays in the one place and can worsen without extra treatment!. I find this particularly for chest pain and if this happens to you , you must go to A&E to be checked out!. I was so pleased to read Barnclown's explanation as to it flitting around your body ie a characteristic of Sjogren's and Fibro. A positive way of looking at it is I guess it can't be doing a lot of damage not staying in a place for very long. A doctor did say this to me once. A tiny consolation as having pain in any form is very hard to live with!.
I do hope you get a diagnosis and much needed treatment plan soon. X
Thanks Misty. That helps a lot. The way you worded it has helped me put the other replies and my own thoughts into perspective. Sjogrens has been on my mind a bit with all my lymph node involvement, dry eyes and mouth and also CNS symptoms.
Time will tell as they say. It'll probably be a few more years before I know for sure (sigh).
Glad my reply helped you. It shouldn't take years for a diagnosis with all your symptoms!. It's a case of finding the right open minded Consultant . Hope you manage this soon for your own sake. X
Hi forum what I experienced yes you can have paid. In multiple places like your brain doesn't know which to deal with first next day a pain can stop the u think hello I'm on the mend then another one starts a broken arm is nothing. That's only one thing to deal with us people don't know what we will get tomorrow. Well that's my penny worth
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