Helllo everyone. I came across an interesting publication from the Cleveland Clinic with the title, Is it Lupus or Fibromyalgia? It will not paste. The author is Blumenthal, MD of Rheumatology at CC. With this you can easily find it with a google. I came across it as I was looking at my new lab scores and wondering if I have fibromyalgia as well as lupus. I think I do. As there has been much talk and concern about which one you may have, perhaps this will help. The clinical signs for fibromyalgia have morphed through the years and I was surprised. Lupus is called, “a rare disease.”
And as that is surely true, or was surely true that remains a puzzle. MM
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MrsMarigold
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Thank you, thank you, thank you. I just had a follow-up with my Rheumatologist Friday. I mentioned I didn't think the Hydroxychloroquine she had me on was helping. Today before I leaving for work I had to take a Hydrocodone instead of my usual Tramadol I take for setting the tone of the day and easing the discomforts of my early mornings. The tingling, numbness, and overall pain and discomfort has been much more than I normally deal with. It's hard to find joy when you can't see past your nose from the pain.
Thank you so very much for letting me know this. I was diagnosed with FM at the beginning of its very sketchy beginning recognition. Given the diagnosis without any explanation or guidance. I have 8 paternal Aunts with Lupus and decades ago tested for it but negative. Was positive for Sjogrens Sicca decades later and still having almost all of the symptoms listed for Lupus. Gave up on being tested now due to the constraints of USA Seniors Medicare + insurances. This article may have answers to my questions.
No I’m not. I am taking gabapentin which is for my serious neuropathy and it seems to help I was taking Celebrex for my severe FM but here in Michigan they made it a RX of last resort ( my conclusion: need to be near death to get it). I’m too old too sick to pursue anything so I’m just making do.
Sorry if I’m moaning my brother’s 1year anniversary of his passing at age 65 years 1 1/2months old was 3/13/24. Up until age 50 I could cry but Sjogrens Syndrome robs me of that privilege now.
Life is hard at best anytime…we must push on because we’re still here and mustn’t give up or in.
You take care sweetie and I pray you’ll meet your goals on time.
Love and prayers sweetie.
EJ 🤗♥️🥰🙏🕊🌿🌸🦋
Oops!!! I just realized I combined to replies for 2 different friends. Please disregard the parts that make no sense…I’ve not been to sleep in about 30 hours and now this reply proves I’m looney atm. I have a great doctor but he panics whenever I try to read my long list of diagnoses. I have to give it to the receptionist instead. She’ll put it in my chart for me. 🌿🌸🦋
Thanks for this. I usually skirt away from these kind of articles having taken 12 years to get diagnosed correctly and definitively with systemic sclerosis and Sjogren’s as well as hypothyroidism. But I just read it and found myself pondering on how I was never misdiagnosed with Lupus, given how many of the stated boxes I ticked prior to treatments. As regards FM - I’ve never been misdiagnosed with this either although “seronegative sjogrens with chronic illness” was what one dr decided on prior to me switching to a new consultant for a fresh overview. I guess my general bloodwork and my not mentioning widespread pain usually spoke for me - but less so now on treatments.
This same specialist dr also stated that I didn’t have EDS or systemic sclerosis where in fact I most certainly do have both but they have somewhat masked each other so it turns out. I note EDS/ HSD isn’t even mentioned anywhere despite the hypermobile type being quite a common cause of widespread pain and fatigue. Also he fails to mention that many with systemic autoimmune diseases will additionally be diagnosed with both FM and Lupus/ RA/Sjogren’s/ Vasculitis/ Myositis/ Scleroderma. Finally I’ll add that it’s thought, in the case of Sjogren’s, that it’s likely many are going undiagnosed or misdiagnosed - so it’s stated as rare but probably isn’t. Same I’m guessing with the others, including sometimes Lupus and especially UCTD.
These omissions aside it was an interesting read and a good insight into the way that many rheumatologists think.
Yes! “The way rheumatologists think.” What compelled me to read it was the reputation of the CC and my latest conversation with my rheumatologist. We sometimes, I’m learning, do not hold enough regard for their commentary because the more we read ourselves we become so damn skeptical. I was one diagnosed with fibromyalgia eons before lupus. Like 30 years. I spent life in my own head with self blame because my symptoms progressed and a new GP, 20 odd years ago told me she thought I had an autoimmune problem that was hiding. Bloodwork just didn’t fit yet. And a very good rheumatologist, which I do wish I had continued with, concurred with fibromyalgia and was willing to treat me with hydroxy. I said no. But. 10 years later all my bloods went wacky and now I can confirm that I am truly unwell ( lovely). I agree with you RE: omissions in publication but it also is not a reflection of their knowledge but of the ambiguity and fluid nature of our conditions. May we all be as well as we can. And get rid of the negative voices in our heads! MM
I'd say, as someone who was misdiagnosed with Fibromyalgia without any widespread pain, this section worries me:-
'Fibromyalgia symptoms often occur in a setting of stress, depression, anxiety, lack of sleep, lack of exercise, and traumatic life experiences.
Stress. Patients should be specifically asked about potential sources of stress, including job dissatisfaction, financial difficulties, conflicts in personal relationships, and overwhelming responsibilities.
Depression. The patient may reveal symptoms of low mood, emotional lability, anhedonia, hopelessness, or suicidal ideation suggestive of depression.
Anxiety. Past episodes of chest pain or shortness of breath might represent panic attacks caused by an underlying anxiety disorder.
Lack of sleep, lack of exercise. The interviewer should ask about any difficulties obtaining restorative sleep, and inquire about recreational exercise.
Traumatic life experiences. A history of physical, emotional, or sexual abuse is quite common in fibromyalgia patients and should be investigated using open-ended questions.
The family history may reveal depression, anxiety, or fibromyalgia in close relatives.
Related symptoms. Fibromyalgia patients, in addition to reporting widespread pain and fatigue, often report chronic headaches, memory loss, loss of concentration, paresthesias in the extremities, and symptoms of irritable bowel or bladder.'
I have diagnoses of major depressive disorder, OCD, anorexia, autism & ADHD (the latter being a large part of the reason for the mental health ones). Autism has caused problems with sleep all my life. My previous rheumatologist's idea of a physical examination was to look at my hands briefly :/. I had a positive ANA and low complement that were ignored, it turns out. She also failed to see livedo, so didn't test for antiphospholipid antibodies, which I've since tested positive for. So many other things were missed and I won't bore everyone again with the details! I think in the context of rheumatology experts there isn't that much room for confusion, certainly not in my experience. I imagine there are lots of cases where the lines are more blurred than mine were and/or the rheumatologist cared enough to do their job more thoroughly.
I understand and like Old Ted, I usually pass on reading these publications anymore. I’m sorry for all of your misdiagnosis and like you, if I told the entire story it would be its own publication; much too long for this space! Rheumatology like oncologists is a serious piece of artwork and mystery but it appears at least where I live geographically it is an art in stasis. And yours as well? But I also still believe it becomes a struggle to diagnose autoimmune diseases unless they present with clarity of bloodwork or organ involvement and so they are thus trained in this way. Equally so in my experience is once you admit childhood trauma or depression with widespread pain; fibromyalgia is the DX to follow you around forever or until a brilliant doctor tests for the”rare disease.” MM
Yes to everything you’ve said. My lovely (lupus specialist) rheumatologist seems unwilling to diagnose people specifically with Fibromyalgia for exactly the type of confirmation bias reasons you outline. History of childhood trauma could account for many diseases and conditions including autoimmune, cancers etc. I prefer rheumatologists who keep very open minds because it’s such an inexact science and to me the CC rheumatologist who wrote this seems to be encouraging their colleagues to do the opposite?
Hello once again. I reread this paper 3 times now after thinking more about comments made above. What I understand from it is overall is this: the medical community fails to examine patients the old fashioned way of listening (history) and physical exam in an adequate fashion. Those of us old enough to remember in US changing into a gown and the physician examining almost every part of our bodies. The writer of this research publication of course does not SAY the examination of patients is inadequate but this is inferred ( by me) Also,then, without a clear examination , there can be no clear diagnosis. I have some “skin in this game” as a former patient at CC first for endocrinologist (excellent) then rheumatologist for second opinion who became absolutely exasperated with me. After a so so physical exam she told me I had fibromyalgia. Walked out. But only after I truly demanded her “ more sensitive tests” for Lupus. I tested positive with high ANA and ds DNA but because I had no ORGAN involvement she declared me negative in a rude email. Assertive patients are served more than a cold shoulder. It can be a locked box. Again, the writer here admits that different testing methods and different laboratories give different results.
The consulting rheumatologist was adamant that the tests performed in 2018 were cutting edge. My rheumatologist at home said “ I’m trying to keep you from major organ involvement. “
That is where science becomes an art. To find a physician with expertise and creativity of both is rare. xx
Thank you for sharing this. I have a diagnosis for lupus for over 25 years, but in the last few years the doctors added fibromyalgia saying that most people with lupus have it too. I t seemed strange to me, but oh, well. They are practicing medicine. By the way, I like you name.
Thx SC. I’m going to read them when I have time to soak it in. For what it is worth without reading yet, and Pumpkin says above, I believe it is entirely possible to have both. As science moves on many more connections will be made. My rheumatologist also this week said he believes I have fibromyalgia as well as lupus, as well as dysautonomia, Erythromyalgia, Raynauds, and it goes on and on. It’s like an Easter basket of disorders 🌼
I think the neuro side of Neuropsychiatric SLE is only just starting to be unravelled.
The antimalarial Mepacrine, that I have just started taking in addition to 300mg per day hydroxychloroquine, seems to have helped, maybe as a combo and reduced small fibre neuropathy (flesh burn feeling), autonomic dysfunction including reduced secretions and POTS, one sided migraines affecting my whole left side and possibly some peripheral neuropathy.
(In my case, I never related to fibromyalgia when it was proposed to me, after the 'It's all in your head' statement from the local rheumy. Pain was only part of the picture for me and it was in completely the wrong place for fibromyalgia, in my front not back.)
If treatments for SLE are working, then maybe more neurological aspects, sometimes attributed to fibromyalgia, are intertwined.🌼🌻🌸🐥🐤🐣
I am very much of the opinion that there are no dividing lines in autoimmune disorders - you have MrsMarigold syndrome, I have PMRpro syndrome and so on. I also suspect a "fibromyalgia" like syndrome can develop over time because of learned behaviour on the part of both the immune system having gone haywire or deranged and also the nervous system which is so used to feeling pain it can't get it "out of its mind". In my own community of polymyalgia rheumatica patients we are frequently told we no longer have PMR, it is now fibromyalgia "because PMR doesn't last more than 2 years" a fallacy that I think developed because of misreading and misunderstanding of a relatively early paper about it. They conveniently ignore the fact that the patient's pain responds to steroids - showing it isn't fibro but an inflammatory condition.
I agree very much. Which is why the value of some popular studies pigeon holes us all as ‘One’ but we are many many many different varieties. And our bodies are damaged as we go along; more to diagnose. The new UK study on the dosage of hydroxy was talked about with my rheumatologist. He was surprised that I knew of it; I asked him what are we going to do in light of it? Thankfully his response was not one size fits all. He said if we cut it in half you will flare badly. Not sure what could be worse right now as flaring for 2 weeks and I’ve not ever been so flaring. I have a question but I think it deserves a new thread. MM
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