Your opinion is your opinon, and there are *many* ailments that have or have not historically had a diagnostic sign and/or test to definitively conclude "This is It." If you'd like to tell me what blood test proves you have a head cold over, say, incipient influenza, then please give me the info, b/c I'd love to know. Is there a scan that says "Yes, this lump is cancer, not fibrocystic"? At times, *no*.
Also, there's a guideline for what is fibro and is not. Ruling out a bucketload of other things---ranging from celiac to MS to RA to common variable immuno-deficiency---is required by responsible physicians before considering fibromyalgia. Mostly, rheumatologists or neurologists give the final dx on this, which is b/c FM is classed a neuromuscular disease.

Do I think there are variations within what is called fibro? Yes. Do they rpobably have various causes? Yes. Kicker for you, Leelee: Same applies to my epilepsy. Varying kinds of epileptic disorders have varying causes (some never to be known) and do not show up even on EEG unless you're lucky (so to speak). So until we know the umpteen factors, microscopic or macroscopic, that are involved? We go with what we have. Bear in mind, mental illness *still* has a stigma of being false b/c you can't see it on a blood test, so why give that stigma to a p hysical illness? Epilepsy doesn't show up on MRI, blood tests, urinalysis, etc., and note ven always EEG, as I noted, so I come into this with a different POV: We Are Not Always Sure of the Disease, but when we have a complex of symptoms that indicate involvement of a specific system or systems, we get the lovely vague "syndrome" designation. (Chronic Fatiue Syndrome, for example.)

Given the history of anemia, have you had tests for nutritional malabsorption issues? Some of those aren't readily discovered by test.

There was no test to prove it was smallpox, either, for centuries, but people still knew it by the symptoms alone.

I'm going to hammer that point home not b/c I'm being a bitch, but b/c deciding the disease isn't "real" without a "test" is doing a disservice to medical researchers, patients with the diagnosis, and all the hard work some of us do to open minds. (PeaceN2You and I met just last spring at an awareness-raising walk for chronic pain and fibro, and while she's nt online much now, she's active in makgin sure people realize this is real even if it's not as easily recognized on a test as, say, a broken bone.)

BTW, I don't always jump when I get pressed on the points, and some docs have abandoned that particular sign. (Sign = what doctor can test for, see, etc.; symptom = what a patient *feels*, I use the two as medical personnel do.)

The fact your legs give out also leads me to wonder if there's spinal cord involvement they're missing. MS is not always caught first time around, and there are other ailemnts (ALS, etc.) to consider as well.

So if you feel your dx is not right? Fight onward until you are satisfied the docs are not just tossing you away. My dx'ing doc was a male rheumy with fibro himself, and he still ruled out 100-plus things. My GP still rules things out once a year just in case. Until I have better info, unfortunately, "fibro" is what I have to call it.

Healing vibes to you,
Leo

Hi Leo thanks for replying but I think I need to give a little more detail because I'm thinking you're not understanding my post. I just gave a brief of my story because it's so much. But I did follow up with a Rheumatologist today that's why I wrote in the forum for suggestions, feedback, support etc. I've experienced pain most of my life, I've just been a sickly little girl you can say. During my youth anemia was diagnosed from my blood as well as when I've gotten old due to Iron deficiency. HBP diagnosed due to constant visit to PCP with high level during my youth. GERD, gastritis, eosinophilia all were confirmed through test, biopsy etc. When I mention that no test confirm fibromyalgia it's because the rheumatologist informed me that there's no test to confirm it. After I questioned her suggestion she further basically said when other diagnosis are ruled out this is basically in so many words the go to diagnosis. So my thing is, this was my first visit with a Rheumatologist, I came in with a binder from previous doctors (Neurologist, GI, Cardiologists, ENT, PCP, etc.) test exc just in case she needed it, I even had a high positive ANA result Who wants an autoimmune disease.... Not I! But I will prefer to know exactly what I'm dealing with than a specialist to throw out a diagnosis. So the statement that said no test can dictate that diagnosis didn't come from me but the Rheumatologist and brochures she gave me. Yes I know a lot of illness can not be determined through blood work etc I'm fully aware. Right now I'm back in the waiting game because she did run more test including the ANA to make sure it wasn't a false positive. She informed me that I might actually come out with two diagnosis or more in the end. After going to physicians most of my life for pain etc. I like confirmation. I just thought it was weird that before she did her own set of test she diagnosed me. But I've waited all these years, I'll wait two more weeks for the test results.

Fibromyalgia is a diagnosis of exclusion. When every other possible source of chronic pain has been ruled out, Fibromyalgia is the culprit. That being said, the fact that you have positive ANA test tells me that you *probably* have something else going on. It is not uncommon for people with Fibromyalgia to have multiple underlying health issues. Many of our members have RA and Fibromyalgia, Lupus and Fibromyalgia etc. I'm blessed with severe OA, and Degenerative Disc Disease with stenosis. We all have different health problems coupled with chronic pain.

Fibromyalgia is recognized by the Centers for Disease Control, the World Health Organization and the National Arthritis Foundation. It also has it's own diagnostic code.

And, with regards to your former patients, depression can increase the perception of pain but that doesn't make it any less real. Chronic pain is debilitating and a huge drain on emotional resources even on a *good* day. That is one of the reasons we are all here. To keep our perspective, balance and general sanity.

Your headaches could be caused by TMJ or a sleep issue. Have you been evaluated by a dentist and had a sleep study done? You may think that you sleep soundly but that may not be the case. And, you could be clenching and or grinding your teeth which can induce headaches equivalent to a migraine. A bite splint can be made to put your jaw in a neutral position while you sleep. I've worn one for years.

You have to be your own best advocate when it comes to dealing with chronic illness. It sounds like you've done a very good job thus far. Good luck to you.

Thanks Fantod I've never had a sleep study. My Neurologist want me to stay in the hospital for 3 days to try and catch seizure activities because he think I may be having some that's causing the twitching. Yes I had to tell myself earlier this year I'm not giving up on finding out what's going on. I spend my life advocating for other so like you said I have to advocate for self now. I've watched many with Fibromyalgia in pain and I know my pain. But I prefer for the specialist to make sure it's nothing else before suggesting and this specialist threw this at me before following up with my current positive test and running further test which after dealing with this for decades it becomes irritating and frustrating. Thanks for the feedback.

I can understand your frustration with the doctors. It's like you said, you have seen many people diagnosed with this, but a positive ANA does suggest autoimmune disease, and they should be going by your symptoms and taking additional test to determine what that disease is. I have fibro and lupus, among a few others like Raynauds and Sjogrens. I pray the doctors help you and find what is causing your positive ANA.

Thank you Twinmomab. I've been cheering for the best but in reality I will rather know the whole truth than partial which I've been getting all my life. It's hard to look at my maternal medical history because they didn't talk about illness you would just see them taking meds every day so that information didn't help yesterday at my appointment. She did tell me it may be multiple diagnosis, I guess I'm so mentally drain that I'm ready to move forward but with the whole story. Wishing you the best on your journey.

The thing is if you do have lupus or something not quite lupus or another autoimmune disease there are drugs that can help. I would suggest going to another rheumatologist, or if you like this rheumatologist ask for a trial of prednisone or plaquenil. I don't tick off all the boxes for lupus, so they have diagnosed me with Undifferentiated connective disease. I have often been diagnosed with fibromyalgia, but since I now have a history of responding to drugs for autoimmune disease, it is mostly thought I do have autoimmune disease. And since I want to be treated effectively, I do have to make sure I get to the more educated rheumatologists. So I look for rheumatologists from universities with good rheumatology departments. This happens to many people with autoimmune diseases that are not clear cut. The default is fibromyalgia, or psychosomatic. Really, thought if you have positive ANA, and request a trial with either prednisone or plaquenil (although plaquenil takes a long time to work,) you should be allowed that even if your criteria doesn't match one thing or the other (why I am diagnosed with UCTD). Also, it is very possible to have both. If that is the case, on a medication trial, you may feel very much better, but still have pain. I have been diagnosed with lupus and fibro in the past.. I have had this for forty years now, and I have been rediagnosed many times, so now I don't care so much about the diagnosis, but the treatment. Fortunately, there are rheumatolgists who treat the person and not just ticking off a bunch of boxes, but is work for me to find the right rheumatologists.

For years, I was diagnosed with Sjogren's because I have positive ANA (anti SSA) in blood tests. However, I did not have the symptoms of Sjogren's (dryness). I had severe fatigue, which could be due to anything.

Then my rheumatologist retired and I saw a new one. This doc looked at the history of my blood tests (which included many tests of other markers besides the ANA), and concluded that I didn't have Sjogren's after all. He said that although I had positive ANA for Sjogren's, if I actually had the disorder, then other markers such as RA factor and Sedimentation (both of which test for inflammation) would be positive also.

Fibro is not an inflammation disease, it is a neurological disorder. Also, the previously required points of pain are no longer a requirement for the fibro disorder, according the American College of Rheumatology.

The doc looked at my other symptoms (like muscle pain, anxiety, etc.) and diagnosed me with fibro. Good thing I finally got the right diagnosis, because prior to it, I was doing things that exacerbated the problem.

Wow Achybones23 I'm so glad you got the right diagnosis. I went to a new Optometrist earlier this year because they took my insurance and she told me I have more led dry eyes and I've never been told that. But it doesn't bother me so I don't use eye drops or anything. I've spent decades being missed diagnosed I really want the truth now. Doctor thought my chest pains was anxiety but that was the only thing that I had in common and after 5 Cardiologist and two therapist anxiety was ruled out which put me back at the drawing board with the chest pain. But I was later diagnosed with GERD after I had a scope plus symptoms which my GI say could be the cause of the chest pain. But now my biopsy from my esophagus tested positive for eosinophilia which making the doctors wonder do I also have an severe allergy problem that closing my esophagus.

Anny thank you for the respond I will talk to her about trial medications. My brother is a nurse and he's been telling me for years that I need to go to the specialists at a University. And I really want someone that's not comparing me to statistics because everyone is unique and look at me as you stated by my symptoms. I'm sure she may have been overwhelmed with a long list of symptoms but as I told her I started having problems in my early youth. So I wanted her to collaborate my symptoms and we go from there. And finding physicians that work together is hard. I want my PCP, Neurologist, GI, ENT, etc to work together. It's scary to look at my kids and wonder could this be genetic because now my 15 year old have chest pain, my 19 year just as I have had headaches since he was 5 and recently diagnosed with hypertension that he's taking meds for. So I strive hard to go to my appointment with an open mind but when it seems like they're not listening to my symptoms I get irritable because I'm thinking about my kids may need to know this for themselves.

LeeLee, I ddin't misunderstand that you were dx'd from childhood with a variety of problems. What I'm trying to point out is that if you're not satisfied this is the right dx? Keep checking. I fire docs left and right if they tell me "this is it" and I know darn well they're just trash-can dx'ing me to get their money. (The bonus of a mom who was a nurse 40-plus years. I was riased to have no fear of docs. Or of telling them off.)

I've got a few dx's (epilepsy, PTSD, fibro, unrelated to each other, ironically), but even with all the tests in the world to "rule out".... that doesn't negate the point that we can't decide it's not legit dx b/c we don't have a "rule-in". And as I said, I think we've got a variety of "types".

Endocrinology checks are *vital* for people with our kind of pain, and with a long history, and also the whole iron deficiency all your life? Metabolic disorder of some kind? Bone marrow check? Even something crazy-weird like common variable immunodeficiency? (CVID)... Hey, I don' thave those binders that you and your docs have. I know what myh docs ruled out.
BTW, I get occasional elevated ANA, but none of my other inflammatory markers are outside the normal range. I think everyone *does*, but not everyone is getting bloodwork like we do. So if they've ruled otu celiac, liver stuff, lymphatic, etc. etc.... Wel, fibro's what you've got until you can get a doc to try a new approach.

I've actually found it useful to go into a doc cold, say, "I've got records of tests and so on, but I want to start from scratch. Here's the symptoms. Now, what's your call?"

Believe it or not, once in a while, a doc doesn't throw you out, and agrees to start over. It appeals to their egos, I suspect, to be the "smarter one" than th eother docs you've seen. Teaching hospital docs especially love that sh*t, I've found.

So, take it, leave it, but bear in mind, it's stilla legit dx, can be comorbid whether we like it or not, or all by its lonely like mine, and so on an dso forth, and all that jazz. And if you're not sure this is a legit dx for you, like we've said, go for other docs. Skip the background. Start with what you have *right now*. Instead of seeing you as a binder of past dx's, a doc might see the totality of "now", and re-test, yes, and get same results, yes, but at least then you *know*.

Cheers,
Leo

I get you Leo. You're right I just might have to leave the binder and start from scratch as you said. When she ask me about my PCP I told her that she was a new one because I had fired everyone and started over so her eyes bucked lol. It's funny now but it wasn't then that the Neurologist said he wanted to see what the Rheumatologist say and when I met with the Rheumatologist she wanted to know what the Neurologist said. I just don't want to be one of those cases get tossed around like a client of mines who recently died. We found out 2 days before she died that she had stage 4 cancer after her physician gave her a clean bill of health the month before. So I really strive now regardless if I make the dr feel uncomfortable to advocate for myself. I'm going to see how these new test come out and what the Rheumatologist suggestions is going to be and in the meantime look for the university hospital in my area.