Fibromyalgia Diagnosis: Do They Know for Sure?
I’m in the middle of a thick book about Fibromyalgia diagnosis and treatment. So far, I’ve read through the first half which deals with diagnosis and source of symptoms. I’m not ready to write up a review of the book yet. However, it has given me plenty of food for thought.
A new approach to fibromyalgia diagnosis
Dr. Jeff Sarkozi has called the “diagnostic label of fibromyalgia” an “absolute mess.” He summarized his theory about fibromyalgia diagnosis in an editorial in the Journal of Rheumatology. The article is obviously written for doctors, but it’s worthwhile to wade in and try to sort it out. Sarkozi has some new ways to look at this ancient problem of “pain from nowhere.”
His scientific approach is refreshing as he takes to task the “true failure of medical science” with regard to fibromyalgia diagnosis. As a patient, it sounds compassionate to me to hear a doctor complain about a “dead-end diagnosis begging for definition and context.” He doesn’t want to leave patients without answers or with answers that don’t lead to help.
Troubles with fibromyalgia diagnosis in RA patients
I’ve been asked, “Do you believe in fibromyalgia?” I believe in fibromyalgia like I believe in Black holes. We know they exist – we just aren’t certain how they work. Unfortunately with fibromyalgia syndrome (FMS), there has not been as much measurable scientific work. A fibromyalgia diagnosis is called a “diagnosis of exclusion.” It means that when there is not a clear diagnosis, this one is given as a last resort. Unfortunately, that’s not how it always happens.
I remember the first person I ever met with a fibromyalgia diagnosis. She was treated with steroids (not usually considered a treatment for fibromyalgia) for years. When her rheumatologist retired, she found a new doctor. I urged her to ask for an anti-CCP test. Long story, shortened, my friend did have misdiagnosed Rheumatoid Arthritis all those years. The RA had not affected her hands yet, so it went unrecognized. Sound familiar? I won’t go into all that cost her health, but I will say that I’ve heard similar stories numerous times since I’ve been blogging.
Some rheum docs do not thoroughly rule out RA or other treatable diseases when they diagnose FMS. Also, some docs add a fibromyalgia diagnosis to an RA diagnosis when the RA symptoms don’t remit with the lowered lab scores. This is done even though the symptoms (fatigue, muscle pain, trouble sleeping, tendon/trigger point pain, brain fog) are historically considered RA symptoms. Not all rheumatologists agree with this practice.
By definition, a diagnosis of exclusion is rare, but fibromyalgia diagnoses are widespread and rapidly increasing. It is extremely common for several rheumatologists to give alternate opinions about whether the same patient ought to have a fibromyalgia diagnosis. One shocking statistic from Dr. Sarkozi’s research: 90% of those who are diagnosed with fibromyalgia do not have it, whatever “it” turns out to be (which he addresses in his book).
Symptoms are not in question with fibromyalgia diagnosis
What is not in question is whether women (>90% of FMS diagnoses are women) diagnosed with fibromyalgia actually have symptoms. Someone somewhere may doubt symptoms, but I don’t. And Dr. Sarkozi does not sound like he does. This is about determining a physical cause for symptoms so that they can be treated regardless of the political or social consequences, as discussed in Dr. Wolfe’s Fibromyalgia Wars. (Note: if you have any trouble opening that last link, click here and scroll to bottom to “References.” Then click “FULL Free Text” on number 2.)
There are other rheumatologists working to clarify the situation with fibromyalgia diagnosis. A recent study by Dr. Wolfe, Dr. Clauw and others is an attempt to establish new guidelines to study FMS. A WebMD interview with Dr. Clauw explains that the former FMS guidelines were not intended for FMS diagnosis, but research.
Recommended reading:
- Are Fibromyalgia Wars & Rheumatoid Arthritis Related?
- Rheumatoid Arthritis News Articles, Volume 2
- Does Rheumatoid Arthritis Pain Really Hurt That Much?
- Rheumatoid Arthritis Swelling: My Confession
Clear diagnostic guidelines and treatment cannot come soon enough for the millions of people affected by this disabling disease. It truly is a “mess.”
Thanks for the update and clarification Kel.
My mom didn’t believe in FMS until she was diagnosed with it.
I must say, for myself, I was “diagnosed” with FM about a year ago. I was also diagnosed with PsA about 4 months ago. While I completely agree with the PsA diagnosis, I cannot say the same for the FM “diagnosis”.
I cannot say with 100% conviction that I have FM. I simply am not sure if this is true. What was the basis of my diagnosis? The fact that my “tender points” are conveniently located where my painful joints are? The fact that I am exhausted all of the time? The fact that my muscles are sore all over? I personally believe that all of these “diagnostic criteria”, in my case, would be true simply because I have PsA.
1. Of course I am going to be tender around my joints…they are swollen and painful because of PsA.
2. Of course I am going to be exhausted all of the time. My body is battling an autoimmune disease. My body is fighting itself.
3. Of course I am sore all over. When our joints hurt from arthritis we over compensate for this and use our muscles in un-intended ways which cause pain.
I am in no way saying that FM isn’t real, My best friend has FM and I have no doubt that she is suffering from it in a most horrible way. The treatment, or lack there of, she “receives” makes me absolutely sick. It is disgusting to see how the medical professionals that we appoint to care for us in our time of need can treat patients with FM with such disregard and callousness. I just think that medical professionals are diagnosing anyone who has any symptoms that come close to FM, causing those who truly have it to be looked upon with disbelief.
This is also true when it comes to autoimmune arthritis due to the fact that they still will not move past diagnostic criteria established decades ago. “but you must be swollen for your disease to be active and cause pain”, “but your blood shows a negative RF”, “but it is supposed to start in your hands and feet, this is what medical journals tell us”.
I call shenanigans. Wasn’t it not that long ago that Lupus, Multiple Sclerosis (MS), Lymes disease, etc were un-recognized and looked upon with skeptisism by medical professionals because they couldn’t “see” the causation? Their patients didn’t exhibit the “classic” model for diagnosis?…hmmm I see a pattern. Then we all conveniently forgot and quickly forgave our “medical care givers” once they realized “oh oh, I guess our patients were telling the truth about their strange onset of symptoms that made no sense to us.” Only after long periods of un-relenting pain for which there was no relief provided. After years, even decades, of “it just isn’t real, its all in your head”. After the damage had already been done.
I believe that everyone is different and that medical journals, definitions and guidelines are just that “GUIDELINES”. Not everyone exhibits the exact same onset in the path of their disease, not everyone exhibits the same symptoms, and thinking this way is putting patients in jeopardy of further damage before a diagnosis is given.
The medical world is constantly changing. Before treating arthritis slowly was textbook protocol, now medical professionals treat it aggressively to prevent further damage. FM was commonly treated as a psychological condition, now it is treated with pain medications and anti-convulsants. All of this time wasted because patients didn’t show classic onset of a “typical” disease path established years ago, when medical research and techniques were inferior, which then changed to establish new “typical” onset and symptoms.
One day a single causation for FM will be found, one commonality that everyone can agree on. Then all of those who have been wrongly diagnosed will find themselves in the medical roundabout with some other medically “un-definable”, but all together very real, diagnosis which will herald skepticism the medical world over once again, causing these patients to be left in limbo land in pain and untreated once again.
When will the medical world learn, just because you don’t see it in a medical textbook or journal doesn’t mean it doesn’t exist…It just hasn’t been discovered yet.
Well stated points, Tiffaney. I’m not sure whether there will ever be a “single causation for FM” though because doctors have been using the label on so many different kinds of patients who don’t neatly fit into a category. However, it may be more likely if you eliminate all of the “extra” FMS diagnoses (what Sarkozi states as 90%).
Kelly, I agree completely! That is very true.
There are most likely many different reasons that patients can develop FM. The same way MS has no one known cause. It could be environmental, genetic, etc.
I think that one day there will be one or a set of tests that will provide legitimacy for those who suffer with FM to medical professionals. Just like when they perform an MRI when diagnosing MS, there is one common diagnostic sign, lesions. Or when they perform a spinal tap, oligoclonal bands which i believe 95% of patients test positive for? Again, this isn’t 100% fool proof and many people who suffer from MS still wait many years before diagnosis if the lesions don’t show right away but it is something concrete, which FM patients need desperately to finally start receiving the proper treatment they so badly need and deserve.
What I have a problem with with my “diagnosis” of FMS is that my doctor has not and will not test for any other conditions because I also have an endocrine condition and “they” say that endocrine issues and FMS have links. But I am getting progressively worse and can’t work anymore or do many basic things for myself (like washing my hair for example, sometimes feeding myself is an issue because my arms are so affected)but because I’ve been “diagnosed” with FMS there is no hope of getting treatment. the system has totally failed me.
*primal scream of anger*
thanks for this article, sorry for the rant! I think the statistics of so many people being “diagnosed” with FMS then being diagnosed with something else is not surprising.
NB: I say “diagnosed” because there are no real diagnostic criteria for FMS, I really wish there was a way to tell so that if I do have it, then I can move on with my life. then again if there was, my doctor wouldn’t test me for it anyway!! lol
I’m just wondering why you haven’t found another doc who can give you a 2nd or 3rd opinion or run the tests you are wanting. I know it’s probably complicated & this is just 1 part of your story. I just hate for you to be stuck. Did you see the blog about my daughter’s wrist the other day? just using the wrist/hand as an example.
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Have just sent a preview – was unable to get back to POST – hope you can read the time spent on my comment. Sharon Levin Head of FM Southern Africa
My Rheumy just mentioned FMS to me (in an email) as a possible reason for some of my pain. I have had RA since 2004 and not sure what I should think about him adding this diagnosis to my chart. Part of me thinks that he’s just blowing me off again because I have no swelling to go with my pain…although my levels were elevated in August again:-/
I don’t go back to see him again till the end of October, and I think its time he and I had a LONG talk.
I’d love to be a fly on the wall at that visit. LOL. Let us know how it goes. Do you think it will end up with your RA being treated more or less aggressively?
Kelly, I don’t think he’ll treat my RA as aggressively, which is why I worry about this possible diagnosis.
Thats what I was thinking, too. Also, my experience. Did you hear me discuss that in my video? If you see another doc, you may get a different opinion on FMS dx. There are not standards. Also, did you read the other FMS post & comments to see what other docs are doing?
Just watched the video Kelly! WOW!
I have FM, which came on very quickly. It was misdiagnosed, but I have had severe Rheumatoid for over 15 years. I think doctors just try every toxic mix of meds they can until they find something that will work. So, I am now on even more medications while trying to balance both problems. And because of all this, I went onto disability this year.
Lucy, what are the medicines they are using to treat your FMS?
One of my primary care physicians (who would rather talk to the computer and ask questions that way than examine me) decided that I had fibromyalgia after I had suggested that my chiropractor mentioned my symptoms sounded like it. (This was about 6 years ago) However a lot of my problems were in my joints at the time, but also a lot of skin sensitivity, inability to drive because my muscles would scream at me, and fatigue (like crazy). I had ambien “thrown” at me along with Lyrica, and my normal antidepressant (which I’ve been off since January). I finally went for another opinion and because my RF was elevated I was sent to the first Rheumatologist. Being frustrated with her, I sought one out on my own (With my sister standing behind me, I found a second opinon after approximately 1.5 years of seeing a rheumatologist who would touch my hands and say I don’t have RA, when all the blood work came back pointing to it. At one point my RF was 90. But because my hands had no swelling, I didn’t have RA.)and for the past 3 months, have finally been treated for RA using methotrexate. I don’t take pain pills (only have tramadol) unless it’s at night, I have too many motherly duties to handle during the day to take something that will knock me out.
I also have (had) a severe rash on my face, under arms, breasts and behind my ears. I had 2 different dermatologists refuse to biopsy it, one sat no closer than 5-6 feet away and diagnosed me with seborrhea. Methotrexate has cleared up my face, about 80% of my underarm and only during flare ups (extreme pain) do the back of my ears get worse. I tried to explain that as a child I was diagnosed with psoriasis (and it runs in my family. Also had an aunt who passed from lupus), but of course, I didn’t have psoriasis, it didn’t look “typical”. One PA at my current Primary Care Physician’s office did biopsy the rash behind my ear and found it was caused by an autoimmune diease (not pinpointed).
I know a long post for a blog about a book I should go read. My current Rheumatologist is leaving the diagnosis of fibromyalgia in with my RA, because she feels it is spawned off of fact I wasn’t treated for RA soon enough. I have 90% of the fibromyalgia pressure points that cause pain.
Kat, you must be frustrated. These diagnoses are not always clear – sometimes they become clearer with time. Rashes can be PsA, RA, or Lupus. I’ve heard of atypical rashes from patients that I have not read in journals because there’s not much documentation when they say “I don’t know” or “it’s atypical” – It’s not like they can take pictures of you & publish it, I guess. It’s a good idea for YOU to take pictures though in case it helps a doctor you see. I had rashes at RA onset before i was established on mtx.
Regarding the swelling: did you already see my last video? I’ll put the link here. Also, the responses to the swelling post show that your experience is common – click here.
Nothing about me has ever been “typical”, ever. My RA affects my hips/knees/feet more than my hands (until recently). I will look at that video, it has been on my “todo” list for today. My joints aren’t changing as of yet, that I can see without x-rays of any sort, but I feel and see the swelling. I pick and choose my shoes depending on the swelling in my feet. Some days it’s minimal and I can wear my very supportive walking shoes, other, I might as well hang up putting tennis shoes on at all, and slip my feet into “clog” looking shoes. A lot of times, I have someone else tie my shoes, either because I can’t due to my hands/fingers or because my hips and knees refuse to allow the movement I need to do it myself.
As for my rash(es), methotrexate has been amazing for them. I will take pictures. Just wish I had a “pre-treatment” picture. Being different or atypical is nice, but so frustrating, because no one will listen if you aren’t in the “norm”.
Hi,
I’ve had RA for about 6 years now with all it’s highs and lows. My hip started hurting about 3 years ago I told my rheumy at the time and he took no notice. This carried on for 2 years until eventually he sent me for a scan, the radiologist saw RA in my hip but not my rheumy…He decided that it’s fibromyalgia, based on the fact that my joints are tender and hurt…that’s about it! My physio just laughed as he gets alot of patients who’ve been told they have FMS as the doctors find it easier to put it down to that rather than do more tests most of the time. A friend was told by the same rheumy she had FMS he later changed his diagnosis, much after several years.
I’m going to see another rheumy this month and hope he can decide why my hips and knees hurt, I still think it’s the RA wriggling into yet another joint.
Kel, did you ever finish Sarkozi’s book, and if so, what did you think of it? I don’t have the money to buy it.
I was just thinking of that yesterday. Probably enough to write up a book review, yes. But I didn’t finish the last part about physical therapy & exercise yet. All of the theory and stats part is up front.
Wish he’d make a less expensive ebook available just so more could read the concepts.
Whether they’ve read it or not (i doubt they have), more RA patients than ever are diagnosed with it & many of them express doubt that their symptoms are not actually the RA. If someone has confirmed RA (or another disease for that matter), I do tend to suspect that the symptoms are probably evidence that the symptoms of that disease are not fully eradicated & tend to be lumped into FMS because the practioner does not know what else to do. It does seem that the majority of patients who have FMS can get varying opinions on that dx if they go to various rheumatologists.
At the recent event in Miami, I read an abstract poster about a FMS study & talked with the dr, still a student rheumatologist, but who had spent a lot of time on FMS. I have to say that what she said made no sense to me because it was not scientific & not based on any evidence, etc. I absolutely believe pateints & their descriptions of symptoms & I truly wish for accurate answers that can lead to better treatments. I had the impression that Sarkozi too believes patients. It is doctors who don’t do the work to get an exact diagnosis that frustrate him.
The whole logical fallacy that started the FMS discussion a few years ago, as described by Wolfe, still should be a stumbling block. You can’t describe a collection of symptoms w/a word & then say that that word IS the cause of the symptoms. That doesn’t get to the bottom of anything. We need to know what is actually, physically going on w/something that we call a disease process.
And there seems to be a whole new industry about pain processing that is driving so much of this now. That is probably good for those w/chronic pain. Yet, like I said, I fear that many do have actual disease processes that are undertreated because they are under-estimated and under-recognized. The symptoms that can get an RA patient labeled as FMS are well-accepted RA symptoms. This is the reason that a person can go from one rheum doc to another and be told, “nevermind the FMS diagnosis; it is the RA” which I’ve heard from a few people.
It’s early for me. Hope this is all logical.
Thanks for the kel part after all these months – it is an endearing name from childhood. makes me smile.
Aw, happy to make you smile Kel! 🙂 I’d say “call me Chels”, but there’s already another Chels here!
I do tend to agree with you, except there are folks out there withOUT RA who have “fibromyalgia” and they need know the cause. I have a cousin recently diagnosed with fibro, and I hope she’s not got RA. I do think that these symptoms in RA it is not fibro and are due to the RA not being under good enough control. I definitely believe that now after recently/finally getting the best medication combination FOR ME that I’ve had yet, finally after 13 years. I do have to add though that exercise and sleep do also play a part. I work in a different PHYSICAL job now where as I was a desk jockey before. The new job hasn’t been easy, especially with symptoms not under control and damage that’s already been done. But the hours are quite different too. Turns out my hours now are the best for me, since my biological clock is off anyway, due to I believe DSPS (delayed sleep phase syndrome). Let’s just say I know right now that I could not go back to a desk job, nor a 9-5 job, much less one that is both. So I do think that the physical job, different hours, in addition to the new medications combination is what has aligned the stars for ME. I hope it can stay that way for a long time to come.
But it’s been the new meds combination for RA has taken away all those “Dr. can’t explain it/figure out the cause” symptoms.
PS- I couldn’t do a desk job right now, even it was at my “best” hours, because I am having back problems and cannot sit (even for very short periods) as this makes them the worst. And I think it might bring my neck problems back. At any rate, as long as I am just standing and or laying down but not sitting, my back problem stays mainly at bay.
Oh yeah, let me add in response the above comment I made,
“But it’s been the new meds combination for RA has taken away all those “Dr. can’t explain it/figure out the cause” symptoms.”…
The new meds combination is even working for pain that both doc and I thought was due to primary OA in some joints, and secondary OA/damage from the RA in other joints. So that makes me say hmmm, must’ve all been from RA really primarily not being under good control even though she thought it was. I’m just thankful something made her decide to get more aggressive with the RA drugs this time, whereas she’s held off on that in the past. Now let’s hope the new doc (last one just moved out of state) hits on the right things too.
I was ‘diagnosed’ with Fibromyalgia when I was 18. I’ve been trying to find out what’s REALLY going on and escape it ever since. I have had swelling, a positive ANA and no muscle pain… Except this is still apparently Fibromyalgia. When the first rheumatologist did the ‘Tender Point Test’ she just pushed all over the area and asked me to stop her when it hurt! There were no specific areas she was looking for….. The areas that hurt were my sore/swollen joints.
Even when my bone scan showed arthritis, I had a rheumatologist say “well you are very Fibromyalgia-ish”……!
I can’t escape it. But I’m on Plaquenil, so at least I’m being treated!
Wow. I hear it all the time, but I still shake my head…
The only answer I’ve found myself or from other patients is to find doctors who don’t have that bias. It’s as if they walkin in the room and put us in that category immediately – usually without an examination of our chart, tests, history, or physical symptoms. There seems to be a divergence in doctors between those who eagerly label that way and those who actually listen and examine and then treat the RA (or OA or lupus or whatever the patient has).
Of course as I’ve always said, the real problem, more so than our feeling misunderstood, is that the actual disease activity needs to be treated.
I hate that this is such a common experience. Fibromyalgia seems like such a waste basket diagnosis, when it shouldn’t be. There are people out there with REAL Fibromyalgia, and there are people out there labelled with Fibromyalgia, but have something else. The latter detract from the real condition of Fibromyalgia.
The ‘funny’ thing is that I have 1-2 symptoms of Fibromyalgia (sore joints and fatigue) but 80% of the symptoms of RA.. Yet they’re happy to diagnose me with Fibro, but shy away from anything else.
Unfortunately, I’ve already done the rounds with the rheumatologists where I live. It took 3 rheumatologists before one would order the bone scan (to show the inflammation). I feel like I’ve already been given the ‘bad patient’ label. I don’t want to rock the boat anymore when I’m being treated. I’m scared they’ll take the medication away.
I’ve been politely trying to spike up a conversation with people I know who are diagnosed with Fibromyalgia to suggest that their diagnosis may be incorrect (i.e. no harm in getting a second opinion). Although they seem to think I’m disputing their symptoms actually exist.
Sarah, I feel like I have been where you are as far as meeting more than rheum doc in a row who is dismissive or doesn’t look below the surface and then worrying that it will be impossible to find care. That’s exactly where I was 2 yrs ago when I finally found a smart doc who was willing to try new biologics on me & never once dismissed my RA symptoms as FMS – even tho the doc did believe in FMS. There is a video I made a year after I started w/that doc where I tell part of this story w/tearful eyes. I had many tears of joy over finally being treated and examined properly instead of being labeled the second I walked in the room and then symptoms all ignored.
My story hasn’t had a happy ending yet but that part is still valid. Patients deserve and need proper treatment. We have to find the best we can. And then as a movement, we attack the problem on the other end too- with the training and educating of current and new docs.
In my own case, the Dr. Smart tried everything s/he liked to use for treatment but not everything approved for RA. There were a couple of options left untried so I tried to get into a clinical trial. That’s a long story because while my disease rages fiercely and is shown by many markers, my crp doesn’t go very high, especially while on treatment. So there is the whole bone scan story – told in 2 posts here w/ attached pdfs and lots of links to back the whole thing up – which ended up w/dr Smart deciding in 1 second w/no previous reason – to fire me for requesting a second opinion of the bone scan. So I have no rheum care. I finally got myself into a CT (clinical trial). But I have to see my GP for some rheum needs and try to help all my specialists who are good docs I don’t want to lose – to understand that I was not a trouble maker in any way, etc… Soooooo, Yes. I understand that if you question them in the least, even politely, you can get into a situation that just makes your own life harder. (Losing meds or a dr, as you say you fear.)
In medicine, second and third and fourth opinions are and should be fine w/ all parties. It’s our bodies & our health at stake. We ought to be in agreement w/what is being stated about us in the chart – we usually are not when we see it.
As far as FMS goes itself, there are 2 streams of docs out there and you have *nailed* the problem for the docs who do that. I’ve read some thick books and long articles to come to the same conclusion as you. So good for you. The real fMs is rare and believed to be neurological, not autoimmune. Not inflammatory. Not treated by prednisone. There are overlap of symptoms and there is not a logical reason to label a person w/ any other type of clear diagnosis as also having FMS without careful consideration. If a patient w/RA (or other dx) doesn’t improve to the level of an advertisement on TV or the blood tests improve slightly but the symptoms remain… FMS is the spectre of many RA patients. They tell me, “I’m afraid he’ll just say my RA dz is doing fine now and I am just stuck w/ FMS.” A no-win because then the RA can either simmer or rage and either way is ignored because it is conveniently blamed on FMS which has no definite test or evident disease process to treat. So the patient gets symptom-only meds and the underlying condition – RA or whatever other dz – simmers on.
To top it all off, there is the political side. As written about in the other FMS post here – about Fibromyalgia Wars, written by a doctor who showed the history of how the diagnosis came about and then became very popular – there are groups which have successfully gained a lot of recognition and have a lot of money behind the dx. There are large pharma companies that also had a lot to do with it. So there has been a lot of pressure on docs and the public to accept FmS diagnoses and the dx have steadily risen into the millions. Meanwhile there has be no group to represent RA at all. Almost no research funding – except for what is done by pharma w/their clinical trials. No political voice. No PSA’s etc. Hence, the new RPF.
As the docs demonstrate in the books and articles I’ve read, most who are labeled FMS are not diagnosed properly, which requires 2 things. (1) Exluding all other explanations for symptoms; fms is a diagnosis of exclusion. (2) Perfoming the most thorough exam we have today for a diagnostic procedure for Fms.
Instead, most patients are either labeled by a well meaning gp who has no clue what to do w/ a woman who comes in and says “O god. It hurts all over the place. What’s the matter w/me?” OR they are labeled as I said above, due to poor treatment of an underlying condition by a specialist (such as a rheum doc) who does not understand that a very small number of patients actually get the level of relief shown in ads. So, the experts show that 90% of those labeled w/ FMS actually don’t have a neurological pain processing disorder, but another treatable condition. That part as I’ve said before, just makes me mad because a person might be robbed of the chance to get better or to at least slow a disease process.
Patients deserve to the right to ask questions and be treated for the symptoms they know they have and not treated for symptoms they know they don’t have. We aren’t doctors. But we aren’t stupid either. How many patients have commented on this blog that they were diagnosed w/ FMS and went home and read the list of symptoms or what was in their charts and said, “That’s not me”? How many have told me that their dr wrote in the chart that they did the 18 trigger point exam, but it was not done?
When you write “I don’t want to rock the boat anymore,” it obviously has a big effect on me. I hear it TOO OFTEN. That’s why I thought it worth the time to write a full reply – for the sake of all others who read this post.
Links mentioned in this reply:
https://www.rawarrior.com/are-fibromyalgia-wars-and-rheumatoid-arthritis-related/
https://www.rawarrior.com/video-rheumatoid-arthritis-doctors-treat-patients/
https://www.rawarrior.com/new-reading-of-the-nuclear-bone-scan-credibility-is-everything/
https://www.rawarrior.com/medical-records-tip-for-your-rheumatoid-arthritis-history-read-the-doctors-notes/
http://rheum4us.org
Wow thank you so much for the reply. I know how busy you are with this site and your own health, so I appreciate that you took the time to help me.
I think, unfortunately this is very common. The rheumatologists I’ve seen seem to be the grumpiest people I’ve ever met! The first one said I had Fibromyalgia, although ignored my elevated ANA and didn’t order anymore blood tests. The second one said I didn’t have Fibro, I had an emotional problem and my ankles were twisted. Third one said it’s probably Fibromyalgia but we’ll order a bone scan to “rule out” any inflammation. When my bone scan came back she eat her words and has said “either Lupus or Sjogren’s”. Fourth one said that I was very “fibromyalgia-ish” and didn’t have enough evidence to suggest this being autoimmune but said my bone scan showed inflammation in my wrists, fingers (DIP and MCP), shoulders, hips and knees. Then he said Psoriatic Arthritis (No Psoriasis or family history). He prescribed me Plaquenil. I’m going back to the third rheumatologist in December! All this before my 22nd birthday!
I just watched your video. It definitely gave me hope. My ESR, CRP, anti-CCP and rheumatoid factor are all negative. I can’t believe that doctor said you were in remission based on that! Without even looking at your joints!? Crazy! I’m glad you found a new doctor, it sounds like things are heading in the right direction. I get the ‘tears of relief’. That’s how I felt when I had the bone scan results. Finally some evidence that can’t be disputed!
The problem I have is that I live in New Zealand and we have a different healthcare system and I can’t shop around. I’ve seen 4/7 of the rheumatologists in my city. I don’t have the power to ‘fire’ a doctor if it doesn’t work out. Also they have to be able to justify and get approval for certain medications. I’d never be eligible for a biologic drug.
I did read your bone scan story. I read it before and after my scan and all the links. I was quite worried about mine not showing anything. I also saw that you said a scan should last 45+ minutes. My full body scan took 20 minutes and my hands 7 minutes. But it still showed something, but perhaps not true extent? I couldn’t believe your doctor ‘fired’ you for looking for a second opinion, it’s what we are entitled to! I wonder what he was afraid of? My biggest fear at the moment is disagreeing or stating my point of view and having my treatment revoked. Although I’m only on Celebrex and Plaquenil, it’s better than nothing! And if a rheumatologist tells me they can’t/won’t help me, I don’t have the ability to find a new one. All 7 of the rheumatologists work in the same rooms and I’m running out of doctors!
I agree there’s nothing wrong with getting another opinion. But I am now running out of ‘other opinions’ and I think I need to just stick with one and hope it’s going to pay off. There seem to be things said about me in my reports after the appointment that I never said or were never even brought up in the appointment. But I guess I just have to trust that this doctor is going to do me right.
I have done a far amount of research on FMS. I wanted to be ready to dispute it if it was brought up again. I knew that my puffy knees and fingers and lack of muscle pain were not symptoms of FMS. I was put on a course of Prednisone by my GP and I improved dramatically. I knew if it was Fibro, I wouldn’t feel the improvement I did. It seems like anyone who complains of being tired or sore could be diagnosed with Fibro. I’m sure all these rheumatological conditions are confusing, but after doing a bit of research (journal articles, your site, people’s stories) I feel like I know just as much as these doctors. There have been things that my rheumatologist has said, yet I’ve found reputable journal articles that say something different (like the DIP joints being involved in RA).
I’m not too up to date on the political/pharmaceutical side of this all. But it wouldn’t surprise me. When one of the rheumatologists was measuring my Schirmer Test she used a “Lyrica” ruler! I know there’s huge push for medication, I haven’t experienced this so far though. But that makes complete sense, the drug companies want people to think a problem is more common than it is and that their product will fix it.
I’ve read the same thing, firstly Fibro is a diagnosis of exclusion, so therefore, anyone who’s diagnosed with RA, depression, Lupus etc should not be diagnosed with Fibromyalgia because there’s another explanation for their symptoms. The current diagnostic process for Fibromyalgia is obviously flawed. Some of my ‘tender points’ were sore because they were my sore joints. The third rheumatologist pushed all over and asked me where it hurt and then called it the Tender Point Test. And of course a doctor could do the tender point test and I could say it hurts when it doesn’t or it doesn’t hurt when it really does. I even had a GP ring me up and say “stop coming to the doctor and just accept that your symptoms are Fibromyalgia and you do not have arthritis”…. I’ve also heard people say “well I’ve been diagnosed with Fibromyalgia by a rheumatologist so I do have it”. I was diagnosed by a rheumatologist too, it doesn’t mean it’s right! I did read that statistic (90% don’t actually have Fibro). I agree that many don’t, but 90% seems very high. It’s frustrating to read people who’ve been diagnosed with Fibro and say “I’ve been tested for RA/Lupus but I don’t have it”. The tests aren’t 100%. I’ve also read posts from people asking if their symptoms are normal in Fibro and they’re things like swollen, hot joints.. Obviously it’s not Fibro!
I definitely agree and I don’t think doctors give us enough credit. We’re not stupid and when our body isn’t co-operating of course we’re going to our own research and try and work out what’s going on. I feel like I have to ‘play dumb’ when they’re explaining things!
I think if I lived in a country like the USA and had the ability to ‘doctor shop’, then I wouldn’t worry about rocking the boat. But at the moment I’m being treated and the doctors are kind of taking notice of my symptoms so it’s definitely better than it was!
This afternoon I had a physiotheraphy appointment and he said “it’s a really possibility that you have Ankylosing Spondylitis”. This is my list of suggested diagnoses so far, Fibromyalgia, rheumatoid arthritis and Sjogren’s, Sjogren’s, Lupus, Lupus and Sjogren’s, Psoriatic Arthritis, Undifferentiated Connective tissue disease, Psoriatic Arthritis and now Ankylosing Spondylitis! This is getting old really quick!
I had checked out most of those links, but the ones I haven’t I will do now. Thanks again, I appreciate you taking the time to help me =]
Sarah, many of your words speak volumes. My daughter laughs saying I play dumb too. I don’t try to do that – their egos are just so fragile most times that it is seen as offensive if you enter into a “discussion” of any kind. I sometimes wonder how I’d be treated differently if it were way back when … what if I gave a dinner party and they were a guest instead of my doctor. How much different would every conversation be? How much more productive?
I hope u find the right diagnosis and treatment to keep whatever it is from advancing on you and creating more problems. Take care of yourself, I know it’s hard work.
I will add that I am both a private holistic (Integrative) healthcare consultant/counsellor/clinical nutritionist and am 18 yrs in remission of all but 1 auto immune disease, and clean of all other illnesses that plagued me for 20 yrs.
I am head if Fibromyalgia/ME/CFS in Southern Africa as a public figure and have worked with US College of Rheumatology and the best integrative researchers and functional medical drs in the world. A great privilage given that I was a speech and drama teacher and had then, nothing to do with the holistic medical world until I made the decision before I demised tx to the medical worlds’ mal treatments, to change my own life and find other ways for I was going to get well. I am no hero- most of my patients do great when they decide too they ‘are sick and tired of being sick and tired’. Sharon Levin http://www.fibromyalgiasa.co,za. Kelly I hope you will take your life back and give back!
My 1st comments are not yet posted – I sure hope you put them up soon – Functional Medicine is the beginning of the end of the BIG QUESTIONS Sharon Levin
all 3 comments were posted (approved) at 11:19 am
Kell if you hear all the as you say about WHAT – Functional Medicine? Then if so, you would be treated properly, no cure for fibromyalgia, but the answers lie with great team work and YOURSELF.
No Magic wands out there for us – we are the patients – get in charge of your life and help will follow after finding the right help! Sharon Levin
Fibromyalgia is not an auto immune illness, nor can it fall under scientific, organic medicine. It is a FUNCTIONAL MEDICAL ILLNESS that shows quite clearly on EMG research studies the the BRAIN’s CNS+ANS are the culprits that have DYSTFUNCTIONED ALL THE BRAIN SYSTEMS AND IMPLODE PAIN INTO THE THE MYOFASCIAL (SUSCLES WITH TIGHTENED TENDONS AND LIGAMENTS SURROUNDEING THE TRIGGER MUSCLES) which cause extreme pain. The Central Sensitisation area of the brain is extremely sensitive in FM thus can bbe called the MURDEROUS pain in theis illness only. Sharon Levin
I have a story that is the same and different….I too was dismissed in a very short few seconds on my first visit to a Rheumy (like so many others). An on the ball GP (primary care) doc very confidently diagnosed RA and referred straight away. Rheumy decided after squeezing just above the elbow on both arms that it was FM and a torn something or other in the wrist. Ordered a wrist MRI and referral to hand surgeon and no further requirement to visit Rheumy, kissed good by and good riddance I felt. To cut a long story short…the hand surgeon cut open my wrist and dx was RA but there is sunshine here somewhere….the original Rheumy has actually turned into my knight in shining armour who wont give up on finding the right treatment for me. He is actually amazing (which is far from what I said in the first instance believe you me). He has now been treating the RA for the last 12 months…we are yet to find the “right” meds for me but he is very supportive and has faith we will get there that he also gives me faith. I feel supported through all the pain by a wonderful husband and a brilliant Rheumy…am currently on the biological roundabout (up to 3rd one now) but am quietly confident we will get there. I guess the key message here is that it may be possible to develop the relationship we all need with our Rheumies even after a rocky start. Dont be too quick to give up and drive a million miles if the help we need may be very close by after all.
After having several blood tests and examinations that had all the symptoms of RA, the rheumatologist still insisted that I had fibromyalgia. I was given anti depressants..that was it. After a few weeks of living in a brain fog, and not caring if I lived or died, I decided to get off of all the meds the dr. prescribed…I lived in pain for several years, and could not get a correct diagnosis. I started seeing another doctor, a General Practitioner, who was a little up in age, after my insurance was changed…He immediatly diagnosed me as having RA….He is trying his best to find me a rheumatologist…there are none in my area…..I am praying he finds me one soon, even if I have to travel far from here to see one…I am in constant pain, can’t sleep, brain fog all the time..tired all the time…and on top of that, now it has hit my knees and I can barely walk…I have neuropathy in my feet and legs…doctor put me on Lyrica, and I had a serious reaction of chest pain and breathing problems….I had to go to the ER and now to the cardiologist…I am praying there is not internal damage because of all the years I have been misdiagnosed….RA is not fun..it has nearly destroyed my life….
I can definitely see where it could be used as a blanket for pain Drs either can not describe or are too busy/lazy to find the cause of. It is VERY peculiar to me that Fibro cases are 2-3 times higher in the United States than in EU.
I do not know if that is a REAL situation or a created situation by US docs over diagnosing….or if it could be due to increased workloads affecting nervous system.
Unfortunately the drug companies are NOT putting big money into curing anything these days. There business models are now based on MAINTENANCE medications that treat SYMPTOMS of chronic diseases. They are not looking for cures for RA, Fibromyalgia, Diabetes, etc etc… Why would they? They are large businesses that seek to uphold their fiduciary responsibility to their share holders…in other words they are there to MAKE A BUCK and CURING anything that they could otherwise sell “medicine” to chronic patients for a lifetime would be fiscal suicide. This is also why in the last 5 years only ONE new antibiotic has been created. So it’s not some big conspiracy..just “good” business strategy.
Why is that relevant to properly diagnosing RA or FMG?
If they never look for a cure they also are NOT looking at what CAUSES the diseases. They ARE looking at HOW the diseases work, so they can discover ways to make maintenance medicines; but looking deeper as top the ultimate causes?// Forget that! And without knowing exactly what causes these diseases, they will not be able to properly diagnose them. People with true Fibromyalgia could just as easily have late stage Lyme disease, the symptoms other than a tick bite are virtually identical…same goes for people that do not have a lot of swelling or what some docs would call “no swelling”.
I have often been offended at the hubris and arrogance of some Drs, which is why I stayed away from them as long as possible. It was only after it became almost impossible to work (eventually was impossible) that I even went to a Dr that promptly diagnosed me with RA..only to later say it was a “mild” case of RA and should not be hurting so much. So should get tested for sleep apnea. Which I did and came back positive but was a “mild” case of sleep apnea which doc said was not going to cause the type of pain and fatigue I have…so backl to the drawing board and the primary care doc..now that I have one :). And now he thinks it is fibromyalgia and says to talk to rheumy about it…but in all honesty the symptoms other than my 18/18 tender spots, seem VERY much neurological. Coordination with my hands is as much or more of a problem for me than pain…the dang things just don’t want to work right some times…probably does not help they have lil deformity form RA…but I have trouble with memory, easily distracted, word finding (when speaking but not typing for some reason) . I find it difficult to read unless on the computer where I can highlight sentences..otherwise I will get lost in the paragraphs..very irritating. 🙂
And just like now I fogot the point I was trying to make…OI VEY! 🙂
Oh YEAH! remember now..
the point I was attempting to make is that Fibromyalgia IS real btu I also feel that there is MUCH needed to be done to see why SOME people with RA have all the Fibro symptoms and others do not. Honestly IO have more BONE pain than joint pain…and bone pain is weird, because you will hurt and not be able to pinpoint it unless you can actually think to press on the bones..even my ribs hurt…so with RA I discovered it is the ends of the BONES that hurt more than the actual synovial/joint tissues. So now my primary doc is wondering if RA is an incorrect diagnosis or if I have fibro AND RA…along with the sleep apnea and ASTHMA that only popped up recently…never had asthma before I was a distance runner in High School.
And yes have all the fibro hallmarks..read an extended symptoms list and it looked like an autobiography..BUT I also have all the positive labs for RA (except sed rate) plus a positive CKS (muscle enzyme?) level…which doc said could be from all the lovely muscle cramps I get.
Sorry so long winded and meandering…I have a LOT of problems with that…brevity seems to be as illusive as any sort of medicine that helps me..other than the asthma medicine….it just seems like my body is on a self destruct timer in the past year or so..slowly getting worse with brief periods of somewhat of a relief from flares..but it NEVER goes away entirely..some days I can leave the house and some days I can’t. BUT at least I don’t have depression…that would REALLY suck…so to any of you that are depressed, my heart goes out to you! 🙂
I believe in fibro. I have seen people debilitated with classic symptoms. My rheumy loves to tell me I have it. My GP and I don’t believe I do, even though I have symptoms of rheumatoid with great lab results. I think some use it as a diagnosis when their magic potions don’t work.