Has anyone been diagnosed with Fibromyalgia before being diagnosed with Lupus? How can you tell the difference between the Fibro symptoms and the Lupus symptoms?
The truth is that 80% of people that are diagnosed with Fibro actually have Lupus or Rheumatoid Arthritis. I consider Fibromyalgia to a "cop out" diagnosis. Rheumy's use it WAY to often with their patients. The fact that you have Raynauds could mean that you do indeed have Lupus instead of Fibro. I do believe that Fibro does exist in some people, but I also think that someday they will either include it in the Lupus criteria or find blood work and other symptoms that go with it. I do believe that it DOES happen, but its a cop out SO much. The difference in Fibro and Lupus is BIG. Lupus patients have joint pain that can include swelling but doesn't do damage. Fibro is "muscle pain" and actually Fibromyalgia medically MEANS Muscle Pain! So everyone gets fibro at some point! Doctors do a test on their patients to check for tenderness in certain areas of the body to "score" them on a scale. Patients with Lupus CAN have the tender points BUT they can have it due to either muscle inflammation, non specific joint pain etc etc etc. Its such a vague diagnosis! Have you had any positive autoimmune blood work? Like an ANA, Anti-DNA, Anti-RO, Anti-RNP, etc? If you HAVE then my bet is that they pinned you with Fibro when you could indeed have Lupus! Please take care and talk to you soon,
The reason I was referred to the Rhuemy is because of all the joint pain I was having and the positive, speckled ANA, positive Anti ds Dna and High Rhuematoid Factor. When I went to the Rhuemy she gave me the Fibro and Raynauds diagnosis and also had me do the other test Anti-Ro, Anti-RNP etc..... I have not gotten the results of those test yet, won't get them till next visit in weeks. Thanks
I was Dx'ed with Fibro first. My sense is that *maybe* I did indeed have so-called Fibro for some years. But for sure, I'd had illnesses and rashes on & off since early childhood that I'd only NOW think of as being probably lupus-like. No way to know for sure at this late date...
I would NEVER associate anti-ds-DNA with Fibromyalgia, though. I'm no doctor, for sure, but it I associate it only with SLE. Ditto with anti-Sm.
But I suspect just about everything else on the "4 of 11" can be caused by things OTHER THAN lupus, as well as lupus.
I hope you are getting clarity finally. Rheumies always re-do tests! At least in my experience! Thinking of you, Vee
I forgot the one lupus vs. fibro thing that I always go on & on about. It's [drum roll] lupus-specific rashes!
By "lupus-specific", I mean as confirmed by skin biopsy by a dermatologist or demratopathologist as being a lupus rash, such as acute, discoid, subacute cutaneous, tumid, bullous, etc.
Downsides of skin biopsies include (1) not everyone with lupus gets rashes; (2) findings can come & go, I think, depending when the biopsy was done (early during a rash vs. maybe too late); (3) labs vary in skill; (4) the doctors reading the biopsy results vary in skill & thus in the Dx they attach to the lab findings; (5) knowing you have a lupus rash still doesn't convey the "subset" you have; (6) a rash is just a rash and doesn't convey what ELSE may be going on with you, such as organ involvement; and (7) rashes can actually overlap subsets.
When I use the word "subset", I mean the ones we read about in hardcover texts, i.e., discoid (DLE), subacute cutaneous (SCLE), and drug-induced (DILE). These are "subsets" of full-blown systemic lupus (SLE).
Annoyingly, people in one subset can get multiple types of rashes. For example, I was Dxed with SCLE but nonetheless got one lousy scarring "discoid lesion", right smack dab on the bridge of my nose. (I'd been warned I could get "discoids" as well... And sure enough... ) Likewise, someone with SLE is most likely to have the malar rash if any rash at all---but is also at some risk for the occasional "discoid" or "subacute" lesion.
Little wonder these health problems are so daunting to Dx and to live with, huh? There are so few definitions that are 100% true, starting with the "4 of 11" and expanding from there! Hope this helps a bit (as opposed to just confusing matters more ). from Vee
I agree with Angelic 100%. I was also told I might have fibro in the beginning. if you have positive labs, then something else is going on...fibro is usually DXed as exclusion, if nothing shows up on blood. It can also mimic thyroid disease.
I was in an debate with someone this weekend on the fibro board about fibro having no inflammation. Someone there was saying prednisone was helping them. I said "if that is true, something else is going on"...otherwise they would give pred, vioxx etc to fibro patients and they don't.
Fibro also does not cause joint pain. I was thinking about this the other day....my first painful symptoms were in my muscles and then the joints started to hurt a few months later...interesting.
I was first dx with Lupus than with Fibromyalgia. I had deveop the "WOLF" rash and alot of pain and tenderness all over my body. To add the extreme fatigue.
After doing my research I came to realize that I had similar symptoms many years before being dx. I came to the conclusion of something that I never connected before. I would have the flare up whenever I took antibiotics.
I took antibiotics for the common colds and for ear infection since I was a kid. I took it like it was candy. "Big Mistake". Which now doctors don't give it like they used to only when it's a bacteria infection.
The meds had made my immune system weak. And like any other immune disorder it triggered probably a weakness that I already had. Even though all these disorders have diferent names and phases they all have a common problem. That being of a suppressed Immune system.
With an ANA and an Anti-DNA then you DO NOT HAVE Fibro!!!! Patients with true fibro don't have blood work positive! The anti-DNA is a specific test for Lupus (it is 97% accurate for diagnosing Lupus)!! So that doctor is dead wrong. The fact that you have the positive antibodies and the symptoms means that you have Lupus. My recommendation is that you see a GOOD Rheumy that specializes in treating Lupus patients!
I had a feeling that the Rhuemy was just trying to patronize me. It seem to be a brush off especially with the cop out diagnosis. I have joint pain (every joint), burning skin pain, sum rashes, shortness of breath, butterfly rash, arthritis, stiffness, migraines, hairloss that started about three years ago and most recently mouth ulcers (although it was not present at appointment). I thought this was sufficient enough for a diagnosis (at least a real one), I guess not. Anyway a family friend has suggested that I go to the hospital for joint disease. I made an appoinment and i'm going on the 19th of July. I have to get a referral from my Prim doctor (who's about as much help as the Rhuemy) along with all the blood test that i've already taken. I'm in the process of doing this and i'm going to get my second opinion. Thanks ladies, thanks Angelicbrat, I knew I was'nt crazy for thinking something was wrong.
Lupus & other autoimmune disorders are generally thought to be the result of an aberrant immune system that may also be overactive. And if really overactive & turning out certain autoantibodies (such as anti-DNA, anti-Sm, etc.), immune suppressants may actually be required.
I was bluntly warned off any so-called "immune boosters" when I was Dx'ed, even things like echinacea that may "boost" the immune response.
It's all so weird, looking way back at your life, isn't it? Just like you, I'd had too many antibiotics years back that didn't agree with me. I know now from reading that many lupus patients react very badly to the "sulfanomide" class of antibiotics---but I have no idea what I was given way back when...
I was in my mid-40's when I realized that there was a whole group of diseases that occur for different "immune response" reasons. And I never once would have thought the word "lupus" on my own, as I knew one single fact about it---that it affected kidneys. So I thought that it ALWAYS affected kidneys.
Needless to say, I had a whole lot of big reading to do when the word was first used to me by a hospital staff radiologist doing a test.
Wishing you the best! From Vee (still in "live & learn" mode!)
I just want to say Angelicbrat that I am in agreement with you that is why I'm going to the hospital for joint diseases on the 19th of July. Day by day I get increasingly worse and i'm not getting any answers from this Rhuematologist. I'm no going to wait around for a complete collapse. Take a look at my second se of blood work. It's positive again for lupus.
HCT L35.2
ESR H41
TSH 1.40
ANA PATTERN = SPECKLED
ANA REACTION = POSITIVE
ANA TITER = 1:40
ANTI DNA ABS DS = *<12.0
ANTI SMITH ANTIBODIES = NEG
ANTI RNP = NEG
ANTI SSA = NEG
ANTI SSB = NEG
COMPLEMENT C3 = 155
COMPLEMENT C4 = H49.0
COMPLEMENT TOTAL = L100
C REACTIVE PROTEIN = 0.65
RHUEMATOID FACTOR = H33
HEPATITIS C ANTIBODY = *NON REACTIVE
Has anyone been diagnosed with Fibromyalgia before being diagnosed with Lupus? How can you tell the difference between the Fibro symptoms and the Lupus symptoms?
Michele
Diagnosed with: Fibromyagia and Raynauds
Hi ... re: your questions (which interest me too as I have been diagnosed with Fibro (one of several illness I have & being worked up for lupus now too), I found some info (below) to be good and may be of interest to you. (From how he words this article, I think this doc really has good insight and understanding) Hope it’s ok to post this..! (more I found on next reply post)
“Do I have lupus or fibromyalgia..?” by Robert Bennett, MD - Excerpts: ….This is not an uncommon question that I get asked. Unfortunately some fibromyalgia patients are erroneously diagnosed as having lupus, a potentially dangerous condition that affects about 2 in every 1000 people. Through your doctor and educational literature and support groups, you have learned lupus patients can have involvement of almost any system of the body including severe involvement of the kidneys, heart and brain. This is scary information; even though you know that only a minority of lupus patients have such a severe course. … The commonest problems encountered by most lupus patients are joint pains, muscles pains (italics mine), fatigue and skin rashes. It is not unreasonable to assume an increased level of fatigue and increasing joint pain heralds a severe flare of your lupus that may even progress to life-threatening internal organ involvement. Such thoughts are anxiety-provoking and depressing; they can cause sleepless nights. Both you and your doctor may be convinced that your accelerating symptoms represent a lupus flare. You may be put on prednisone or the dose of your steroids may be increased. But before you and your doctor jump to conclusions, consider the possibility that you could also have fibromyalgia….
Fibromyalgia is a common condition of musculoskeletal pain, sleep disturbance and fatigue, that affects about 20 out of every 1000 persons. Recent studies have shown that approximately one-third of patients with lupus also have fibromyalgia. In general, lupus patients who are undergoing a flare have other findings such as: evidence of true arthritis (usually with joint swelling – foot, elbow, knees, fingers), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. [B]Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia…… [/B] It is important to realize that the symptoms of fibromyalgia do not respond to corticosteroids such as prednisone or even immunosuppressive agents…. In my experience, most lupus patients are often shocked to hear that they also have fibromyalgia, and in many cases don’t like being given that diagnosis. They somehow think that it is not a real disease and detracts attention away from the realities of having lupus. I can understand these thoughts. However, knowing that some of your musculoskeletal pain is fibromyalgia-related and not lupus should also be good news -- as who wants to have lupus flare?.... Lastly, there are some "lupus" patients who have only fibromyalgia, but on testing were found to have a weakly positive ANA. They were incorrectly diagnosed as having lupus on the basis of the blood test... In the absence of systemic lupus erythematosus, the most common reason for a positive ANA test is the presence of another connective tissue disease. I still, like Angelic - and despite what following articles say... personally believe ... that many are often given the Fibro diagnosis when docs are not sure when they've had lupus "growing" all along... although I also personally believe Fibro is a very real, separate and just as important entity too by itself {supported by info below] ... It, unforunately, often is just plain difficult to know for sure... s o you have to hang in there and keep watch on your own body and symptoms... …Furthermore the fibromyalgia group were less likely to be able to perform daily activities or be employed… Repeated ANA testing may eventually disclose a weakly positive ANA. It should be stressed that several careful studies have not found an increased prevalence of positive ANAs in fibromyalgia patients… It is obviously important not to misdiagnose lupus in fibromyalgia patients, as its treatment with steroids and cytotoxic drugs puts patients at an increased risk for iatrogenic disease. Steroid withdrawal may mimic fibromyalgia symptoms (36) and make fibromyalgia worse. …One controlled study of steroids in fibromyalgia showed no therapeutic efficacy (37). Although there are currently no effective medications for treating fibromyalgia patients, a conservative approach stressing life-style modification and gentle exercise is very different that the usual approach to treating lupus…
Consequences of having fibromyalgia and lupus - The development of fibromyalgia in a lupus patient will complicate the differential diagnosis of new symptoms and make effective treatment more difficult. Fibromyalgia is more than a muscle pain syndrome, as most patients have an array of other somatic complaints … Conclusions --The development of fibromyalgia in a lupus patient complicates the clinical picture and treatment decisions several fold...
here's rest...
Excerpts from Article from Lupus Foundation of Minnesota - Fibromyalgia is common in people with lupus (up to 40 percent have both) and fibromyalgia can occur anytime during the course of lupus. Fibromyalgia is an often misunderstood and misdiagnosed chronic condition. However, it must be understood that FM is *not* a "wastebasket" diagnosis. It is a syndrome which has a specific set of signs and symptoms that occur together. Although not technically listed as a disease due to it's lack of known causes it can be every bit as serious and disabling other various forms of arthritis such as Rheumatoid arthritis, or Lupus, or other afflictions classified as syndromes.
From an article from Cleveland Clinic: Tired, aching, ANA-positive: Does your patient have lupus or fibromyalgia? “… Laboratory methods differ… One can draw several conclusions from many studies done… … ANA testing is frequently positive in patients with fibromyalgia….” Esp. in lower titers…
Excerpts from an article I found on how to distinquish between fibro and lupus: Diagnostic criteria - Unfortunately, no medical test or x-ray can help provide definitive diagnosis of fibromyalgia, although these tests can help evaluate suspected coexisting conditions or rule out other possible diseases. Prior to 1990, there were no guidelines for evaluating and diagnosing fibromyalgia. American College of Rheumatology criteria: History of pain - Widespread pain -Right and left sides of the body - Above and below the waist - Along the axial skeleton - Duration of pain - Constant - More than 3 months. …to meet the diagnostic criteria, pain must occur in 11 of 18 paired tender points… Clinical presentation: Some authors have noted that the typical patient has seen an average of 15 physicians and has been affected for approximately 5 years prior to being diagnosed correctly with fibromyalgia. At some point, most patients have been told that nothing is medically wrong and that the condition is all in their heads. Many patients are frustrated and skeptical… …Most patients with fibromyalgia are female and do not appear chronically ill. They may look fatigued or agitated. Their chief complaint is often "I hurt all over all the time." The quality of their constant pain is described as burning, aching, and soreness. They may feel as if they are bruised all over but without visible signs. Although the pain is constant, the location migrates and the intensity varies. The patients report their fatigue is second only to pain. The fatigue is worse in the morning and early evening. Other common complaints, including chronic headaches and tenderness of the scalp to the touch. Complaints of chest pain, shortness of breath, and palpitations are common. alternating diarrhea and constipation, bloating, cramping --urgency, frequency, and a sense of incomplete voiding.. Associated conditions - Several medical conditions and diseases are thought to coexist frequently with fibromyalgia. (Lupus was on the list – I deleted cause too…long) These coexisting conditions can aggravate and perpetuate symptoms. Left unrecognized, the physician inadvertently might prescribe an ineffective or even harmful treatment regimen…
these articles were very interesting and informative. I also think that there are serveral other ways of distinguishing between Fibromyalgia and Lupus. For instance, hair loss, mouth sores, JOINT PAIN (not muscle pain), arthritis, sun sensitivity, malar rash, dizziness, swelling in joints (legs, ankles and feet are soooo big, can't fit my shoes), positive Anti ds Dna and ANA, all of which I have. I think that this should be an indication that something is going on and it needs to be seriously looked in to. I was put on 10mg Elavil and 500mg Naprosyn for the Fibro and it did nothing, i'm still in pain, so something's got to give. I can't live like this. What ever needs to be distinguished, needs to hurry up and get done so that we can get to the heart of the problem.
Re: your bloodwork results of positive anti-ds-DNA & positive ANA---
How many instances of positive anti-ds-DNA results have you had? Has your doctor indicated what threshold you must cross, what he/she must see, before being Dx'ed with *something* and treated? Do you even consider your dr. to be a reliable specialist in the autoimmune area of medicine? Is there any other more experienced specialist to whom you might have ready access?
The city specialists who Dx'ed me (after I spent years attempting to get help from local suburban doctors) were pretty scathing about my suburban doctor's "non-diagnosis". The cost to me of the long delay? Probably severe osteoporosis, which was identified and progressed fast during the pre-diagnosis years. The lucky part for me? I show no signs of major organ involvement.
I had NO IDEA WHATSOEVER for almost all of my suburban-doctoring years that lupus was a possibility. As soon as I heard that it was, I started reading up and looking into city specialists. I sensed that *I* would have to be the one to jump-start my own progress. I waited to get my next big rash & accompanying symptoms, then booked with the Manhattan dr. I'd picked.
But unlike me (for many years), I think you have real reasons to suspect that lupus is a possibility.
So.... Is this dr. the ONLY doctor available to you? Do YOU have some other specialists' names lined up? In short, a game plan, just in case?
AMEN! to what you and Veej's last posts....! Especially getting a big city (or large teaching university - usually in bigger cities) doctor whose SPECIALTY and AREA OF INTEREST is AUTOIMMUNE DISEASE.... Most (im my & many others on these boards!) experience... rheumatologists even do not know enough about lupus, sjogren's, mctd, --- i.e. CTD's....
As you can read from my previous posts.. it is only after seeing the chief of staff of autoimmulogy at the Cleveland Clinic recently... that I now have some HOPE again that they will find out what it going on in my body... cause at this point - very much like you I have too.......... many things going on that tho I have a diagnosis of Fibro (amongst other things)... I feel the docs (even some at another big city instition in this state) have really "missed the mark" in what is going on with me... tho I certainly do not dismiss Fibro - it in itself is bad enuf in my opinion....
Now the Cleveland Clinic doc, tho very good - thorough & listened - really listened - makes comments like --- central nervous system involvement, and "concerned about youir kidneys" and more...(all this without saying the words "you have lupus or..." but he sure had concern on his face several times) and though I am VERY HAPPY to have finally seen a doctor who seems (I really hope!) to know his stuff......I'm still scared it very well may be coming after much irreversible damage has already been done... And I'm scared that even after 20 vials of blood for bookoo, very indepth, tests.. and urine tests, and lip biopsy, and bone scan (I have deep bone pain -bones feel bruised), that the LABS will again not support a "DEFINITVE" diagnosis...(which means no DEFINITVE treatment... =( ... then what do I do...!
like you... I have too many things going on for this to be just Fibromyalgia (your symptoms to me definitely show thatesp. the postive anti - DsDNA which is 99.9% Lupus specific! ) and since Fibro is treated very differently than lupus (CTD's) and I do not want to further "deteriorate"..
Oh, oh, oh. I get so wordy sometimes...! Sorry - I ask the same as Vee... have you seen a "big city" or large teaching university doctor whose specializes in diagnosing and treating LUPUS..? If your labs have consistently come up with positve DsDNA... then unfortunately.. I really believe that "SOMEONE" needs to take that more seriously,, and I too am curious as to what kind of doctor you are seeing, if he/she plans to follow-up on that and other symptoms or is just giving you the ole brush off because they are really either stumped or really just inadequate in the area of autoimmune illnesses (not to say he/she is for other things)... Even the very best, top-notch autoimmune specialists often have a difficult time with determining just what illness is truly going on...... so......
I just reread and noticed Angelic had stated in a reply here that anti-DsDNA is 97...+ % positive for lupus.... I'm not trying to contradict.. in my research I've read it is 99.9% postivie for lupus....
Vee (again)... now commenting on Hewie's comment about even rheumatologists not knowing a whole lot about lupus, Sjogren's, etc.
The rheumies I saw BEFORE going to a teaching hospital practice known for specializing in lupus were like what Hewie described! i.e., very good at SOME areas of rheumatology, but (I came to suspect) not ALL. Certainly not lupus with its immensely tricky & challenging "4 of 11" diagnostic criteria. But, hey, something like RA? Yup---brilliant at THAT, I'd bet.
Weirdly, a local rheumie beamed at me as he informed me (pompously) that I did NOT have RA. Well, duuuuuhhh, even *I'd* have bet money on that!
...which is all a way of saying that there are "specialties within the specialty" in rheumatology---and probably many other medical disciplines as well. One of my early dermies was really into Lyme. And guess what? I was treated for THAT early on, too!
Still thinking of you & sending you my best wishes again, from Vee
Fibromyalgia-Lupus, what's the difference? 
). from Vee
re: your questions (which interest me too as I have been diagnosed with Fibro (one of several illness I have & being worked up for lupus now too), I found some info (below) to be good and may be of interest to you. (From how he words this article, I think this doc really has good insight and understanding) Hope it’s ok to post this..! (more I found on next reply post) 
