I am sorry if this is a repeat, but I was wondering how many people have been diagnosed with lupus then fibro? Or vice versa. And can you explain what felt different between the two? Thanks, I just have some new things going on so I am curious.
Tez_20 posted a wonderful article not very long ago regarding the difference between the two. Although I am uncertain where to find it, using the keyword and tag function should help you.
It was very informative.
And, yes I was diagnosed first with Lupus then Fibro & Sjorgrens.
Dx. with SLE & Fibro. at the same time in 1995.
I could not find Tez_20 in the membership, and would like to read the post. Help? finding the post?
I was diagnosed with Lupus first, then fibro. For me, the difference seems to be the fibro is mainly in my neck and shoulders, and lower back. So its mainly muscle related pain and discomfort and the Rheumie feels is the biggest cause of my fatigue. My lupus seems to be joints, feet, ankles, knees - wrist and hands and the swelling and pain associated with it. I hope that helps you.
Fibro, then lupus, then sjorgrens. Then was told not SLE and got very sick 2 years later and 2 years after that was
rediagnosed with lupus. Trisha is right about the differences, at least for me. Tez is no longer listed as you said and I can not find her discussion about the difference but I am not that great either finding things.
I searched for her discussion as well, and couldn't find it.
I was diagnosed with SLE first, but my reuhmy had certain doubts and he discarded the idea of Lupus. then i was told i have Fibromyalgia which is the reason of muscular pain in my neck, arms and lower back. but since i had pain in fingers, wrists shoulders, ankle and toes etc I took a second and thrird openion and SLE was confirmed along with Fibromyalgia. the diffrence to me is almost the same as Trisha explained. Fibromyalgia is muscles related pain and Lupus is all about joint, stiffness and swellling. Hope this helps.
Stay strong. :)
I was dx’d first with sjogren’s syndrome, then vasculitis, then fibro, and lupus was finally diagnosed in my 20’s. The fibro causes more muscle and tendon/ligament pain as well as severe fatigue and brain fog. Lupus is more in the joints causing swelling and pain with movement. I also get severe headaches and kidney issues from the lupus. Fibro tends to be more of an all-over ache and lupus is morejoint related. At least that is how it feels for me. I’ve spent decades trying to figure out the difference because there is so much crossover.I hope this helps answer your question. Gentle hugs, Annemarie
Lupus first, and then fibro about a year later. Lupus pain is much more joint related and the fibro pain seems to be muscle or tissue. Like it hurts to just rub across by upper back or lean back in a chair and have the chair put pressure on my skin when it's fibro. With lupus, it more about joint pain and it hurts to move my joints, but it also aches in the joints. It was hard to tell at first. Especially because fibro makes the inside of your elbows and knees very sore to the touch and those are in the joint area, but you can tell that it's not the joint itself, but the muscle/tissue/skin that is painful to touch. Hope this helps!
Thanks for the insight, it is helpful. Does a rhuemy also make the diagnosis for fibro?
I was also diagnosed with Sjogrens then most recently with Lupus, Fibro and Vasculitis.
I too see the difference to be pain all over body. Even to bend down as your muscles stretch they ache. Even as simple as putting on your socks. That’s the Fibro. Even just a simple warm hug will get me to resist because of the pressure put on my upper body.
When I am flaring from Lupus I feel as though my bones are trying to come out of inside me. My toes, hands, fingers, knees pretty much entire legs ache so bad that its hard to move.
What’s funny is that pressure n hot water tend to reduce the pain. But not when my Fibro is flaring.
Those days I pretty much just rest n take a pain reliever.
I noticed that when I push myself n I am flaring from both Lupus and Fibro, the pain n pressure that I put on my feet n legs trigger my Vasculitis. I get red spots all over my feet, toes, legs n sometimes all over my upper body.
Right before i break out i get a different form of pain. It feels as if I have pins or needles pooking me. It’s painfull to put your feet on the ground. Pressure makes it worse.
Hope you find yourself resting n in better health soon.
It’s hard to deal n manage this lifestyle but we are strong n we have proved it.
I was diagnosed with Lupus in 2009, then Sjogrens. Diagnosed with Fibromyalgia about 1 month ago. From what I have read and have been told by several physicians that with Fibromyalgia there are certain pressure points that are tender and hurt to touch. Lot of similarities with both lupus and fibro. I am still trying to figure this out also since the diagnosis of Fibromyalgia is new to me. I have been running a low grade fever for over a month now. Runs anywhere from 99.6 to 100.2. I believe that it is my lupus causing the fevers. I do see my rheumy tomorrow and I will talk with her about that.
I’ve had a spotty history with rheumies. Since I first became ill 15+ yrs ago, my GP’s and my neurologist (who is brilliant, & who I’ve seen since Day One) have all agreed I have fibro, but have also all strongly suspected something else - either lupus, RA, or MS - was going on as well, because I’ve always had a boatload of symptoms that didn’t really fall under the fibro umbrella. I’ve seen at least half a dozen rheumies over the years, and none have been willing to commit to diagnosing me witanything beyond fibro, despite positive ANA’s and other strong symptoms and iffy bloodwork. My GP and Neuro were concerned enough to put me on plaquenil 2 years ago, and early in 2012 I began having flares I could very clearly distinguish from the fibro ones. For one thing, sun exposure would always trigger one. But more importantly, as others have said, rather than the muscle-tendon acheyness of Fibro, the Lupus flares for me always involve swollen, very painful joints. I had a flare last Thanksgiving where my wrists and knees were all so painfully inflamed, I could barely walk or feed myself. Also I typically run more than just low-grade fevers with lupus flares, but just low-grade or none with fibro. Taking anti-inflammatories helps a little with lupus flares, whereas it does nothing for the aches and fatigue of the fibro flares. I’ve also started getting joint nodules on my fingers that get worse with each lupus flare(this could be indicative of Rheumatoid Arthritis instead of or in addition to the lupus, or it could just be the lupus - but it sure isn’t fibro!)
As for your last question, technically a rheumie would be the “go-to” person for fibro, partly because you need to be certain that it really IS fibro, and not something else. Unfortunately, in my experience, most rheumies seem relatively uninterested in fibro patients: they just want to “treat & street” you, typically with lyrica and/or an antidepressant. The main rheumie in my area made it known he was no longer taking ANY new patients with fibro, which infuriated me no end! The good news is that any smart and sympathetic general practitioner, internist, neurologist, or pain management specialist can make a basic fibro diagnosis and formulate an initial treatment plan for you. But after that, it’s up to you to educate yourself about any symptoms that are NOT typical of fibro, and if you have any, you MUST report them to your dr., get bloodwork, etc.
If there’s one MOST important thing these past 15 years of dealing with all this has taught me, it’s that we HAVE to be our own advocates! We have to be knowledgable about our conditions, treatment, medications (& their side effects!), etc.,
We have to always remember: our doctors work for us, not the other way around! Don’t ever be afraid to speak up, ask questions, or challenge your doctor if you think he/she is wrong. It could save your life!
Best of luck to you - if I can ever be of any help, please feel free to msg me! hugs
I’ve had fibro for years and it’s muscle and tendon pain and it hurts if I touch anywhere the lupus is recent and it’s joint pain especially ankles knees hips elbow back and fingers. Also get very swollen ankles which last a few days. I’m permanently exhausted and have no energy but I’ve recently started on hydroxychloroquine and feel it is helping. I’ve also been on tapentadol for the fibro and it’s very good. Ask you GP about it. My pain specialist put me on it and he said it’s fairly new but having really good results. I’ve also got some symptoms of sjorgens . It would seem they are all related. Hope this is helpful
Thank you all! You are such a blessing!
I was diagnosed with lupus 2003 then I was diagnosed with fibro in 2010. the only difference I notice was I was in constant pain all over, all the time. My fatigue became exhaustion and I was on the edge of the abyss trying on.Aisa64
I was dx’d with fibro about 3-4 yrs ago. Now he’s saying UCTD.
I was dx with fibro first and five years later cutaneous lupus and then SLE. I think trish said it best. Fibro is muscle pain with certain trigger point and lupus is more my joints. Maybe able to find the article from Tez_20 in one of the speciality areas on this site.
I was diagnosed with Fibromyalgia first then Lupus, about 10yrs after that Always had a positive ANA test but Sed rate would go up and down, I was diagnosed with Fibromyalgia in 1996, but that last couple of yrs having been having more Lupus symptoms, I get these sores all over my head, had weird red blotches on torso and legs and back had biopsy just came back as high inflammation, I have a couple of times when WBC's get very low, been having cast in urine which means leaking protein from kidneys, but I have chronic Interstitial Cystitis, then on top of this, I have several episodes of colitsis leading to passing straight blood, which has sent me 2 ST several times, also enlarged lymph nodes in neck, and legs, and on top of all of that just had a core biopsy of breast 4 unusual nodes, and did I mention that I just lost my SSDI, talk about stress making Lupus worse. But I did feel like people at least people have heard of Lupus more than Fibro, so you can get a little more valadation from Lupus diagnosis then Fibromyalgia, but they both SUCK!