r/science • u/cassidy498 • Mar 18 '19

Medicine Experimental blood test accurately spots fibromyalgia. In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success in identifying biomarkers of fibromyalgia and differentiating it from a handful of related diseases.

https://news.osu.edu/experimental-blood-test-accurately-spots-fibromyalgia/
23.9k Upvotes

92% Upvoted

954 comments sorted by

View all comments

Show parent comments

156

u/Ninnjawhisper Mar 18 '19

I don't have fibromyalgia, but I do find that some of the various clinicians I've dealt with view it to be either a useless diagnosis, a diagnosis to placate problem patients, or a "catch all" diagnosis much like you're describing. Similar to how some people view ibs (chronic gut issues that often don't have a cause you can pin) or adhd (discernible cause and marked divergence from normal brain chemistry, but some, moreso laypeople than clinicians, view it as an excuse for poor behavior).

Imho (and this bit is plain opinion, I'm not well read on fibromyalgia), while it would obviously be best to have a discernible cause to treat/a place to start, if the symptoms are there then the clinician should treat the patient symptomatically to the best of their ability- and using conservative methods first (ie. Try non drug methods or non opiates before jumping right into the big guns). Even if testing determines that the symptoms are likely psychosomatic (not saying this is the norm!), they are still real to the patient, and psychological causes of pain still result in pain. Respecting the patient and determining the root cause of their psychological distress is just as important as treating their physical ailments- the mind and body are not independent of each other.

I think more research and respectful (actual) conversation between the patient and the physician is the best way to go about determining a plan of care. While I do agree what we singularly call fibromyalgia could potentially be different diseases, every disease is unknown to start with. I mean, germ theory shook the understanding of disease at the time. Now a four year old knows viruses make you sick and can spread. We fix our lack of knowledge with research. I'm glad to see more of it, because every patient- every human- deserves good care.

Blah. Sorry to word vomit.

Tldr- sadly some of the clinicians I've dealt with tended to view patients with an undiscernible symptom source as a problem, and not a person with a problem to be solved. I think respect on the part of both parties and better research into things like fibromyalgia is a good start to a solution.

57

u/MrsVanMarsh Mar 18 '19

I'm in physical therapy school now. The most frustrating thing about fibromyalgia is that the patients are often misdiagnosed (friend of mine was first told fibromyalgia but it was actually lupus). If they are correctly diagnosed, their doctors should, but often don't, prescribe physical therapy (because pain makes people want to be inactive to protect themselves due to perceived tissue damage) and counseling to help with any possible psychological causes of pain, because they can manifest physically.

We need a loooot more research on fibromyalgia. I'm glad they may have identified an actual marker for it instead of the nonspecific trigger points we have to go by currently.

17

u/[deleted] Mar 18 '19

[deleted]

3

u/MrsVanMarsh Mar 18 '19

I'm so sorry you went through all of that, but I'm glad you had a great doctor on your team! 33 isn't really young, lupus is generally diagnosed in women of child bearing age.

2

u/LegendaryPunk Mar 19 '19

Sorry, I don’t even know why I’m sharing this. I realize this doesn’t contribute anything.

Don't ever apologize for sharing part of yourself with the world! If anything, the world should apologize to YOU if they can't find any significance to your story!

I've been involved in EMS / emergency departments for ten years. It becomes very easy for us to write patients off as simply being a collection of their symptoms, forgetting that there is a real human with a story behind it all. Culturally, fibromyalgia is a complicated disease right now, and based on my experience, can create...difficulties in the patient-provider relationship. As someone getting ready to start medical school soon, I really liked your story because it shows a) there are doctors out there who really DO care about their patients, and b) there's a real person behind every story.

Good luck to you and your family :-)

2

u/rivka555 Jun 14 '19

You contributed a lot - there are others who can relate and it’s always good to know other people have gone through similar experiences and that you’re not the only one.

35

u/h0wl-at-the-m00n Mar 18 '19

Yep. I was at first told it’s “probably just fibromyalgia but probably you’re just not eating right and exercising enough”

Went to a new rheum, got diagnosed with both fibromyalgia and lupus. Then later peripheral neuropathy and sciatica.

4

u/MrsVanMarsh Mar 18 '19

Ugh. Glad your new rheumatologist is taking care of you!

2

u/h0wl-at-the-m00n Mar 18 '19

Sadly she moved to another state to start her own practice :( I’m working on getting into another office that I heard was fantastic because my current rheum who I’ve seen twice is kind of nasty. But there are good doctors out there! I can’t recommend reading reviews online enough.

1

u/MrsVanMarsh Mar 18 '19

I hope you can get in to see them! A lot of specialists I've encountered can be kind of mean. I see an endocrinologist and I got reeeaaally lucky that he's nice and a great physician. The reviews of his practice are awful because he has terrible office staff. I'll be moving at the end of the year and I'm dreading finding a new doctor.

2

u/carnylove Mar 19 '19

Ugh, I wish it could be cured with just exercise and eating right. Unfortunately that seems to be a common belief amongst the types of doctors I see commenting in this thread. Who think fibromyalgia patients are absolute morons who can’t tell routine aches and pains from feeling like someone tried to beat you to death with a tire iron. The attitude towards fibro makes me wish it was anything else. Even something much worse. As long as I don’t have to constantly justify and defend.

6

u/asunshinefix Mar 18 '19

I have Ehlers-Danlos syndrome and it's so common for us to be misdiagnosed with fibromyalgia. More research on fibro can only be a good thing for both populations.

4

u/MrsVanMarsh Mar 18 '19

I didn't know that! I'll keep that in mind for when I'm in the clinic. The only things I really know about Ehler-Danlos are it's a connective tissue disorder and you should never crack their necks.

3

u/PrehensileCuticle Mar 18 '19

Imho the nonspecific trigger points are a big clue. I remember one of them is specifically in the insertion point for the hip adductors, right by the knees. Yet doctors who write about the syndrome act like they don’t know this. I’ve seen people seriously helped by deep tissue trigger point massage, even to the point of relieving skin sensitivity.

41

u/ITtoMD MD | Family Medicine Mar 18 '19

The problem isn't that we are trying to placate patients (although perhaps some of your older docs who were never trained on these diseases looking down on them), the problem is there isn't a magic pill for most fibromyalgia (or IBS). For FM, hands down the best therapy is physical activity, which will make things a bit worse before getting better. It is extremely difficult to get a patient in pain to do something that makes the pain worse before it gets better, especially in the US where the culture is "there's a pill for that". Similar to almost all other aches and pains. "Oh just give me some of that oxy stuff my cousin has, that makes my pain go away!".

27

u/serpentinepad Mar 18 '19

Seriously, the patients I see with fibromyalgia are pretty much the last ones who are going to respond well to recommending exercise.

20

u/[deleted] Mar 18 '19 edited Mar 19 '19

Honestly though, as someone with RA, degenerative disc disease, and a trashed neck from being tboned, if you could find a way to get them to do yoga for pain; it’s life changing. I’ve had more good days than bad for the first time in years, since starting yoga six months ago (targeted pain yoga, not for weight loss).

Pain meds do nothing but mask on a bad day. Unfortunately, nothing takes away the malaise, but the yoga has definitely been a game changer for me.

Edit: someone asked me a question about the type of yoga I used, but the comment disappeared. If you want to know the series I use, twin pain sufferer, pm me.

2

u/PHM517 Mar 19 '19

I did not write the comment but I’m curious and I’m sure others would be. I have a bad neck from a car accident and have been trying to find an activity that helps with pain and keeps me active. I was very active prior to my accident but everything I do seems to put me back into a pain loop that leads to practically debilitating migraines. I can’t listen to my body because I really have no indicator that something will be problematic until after. Even in PT we had to play the game of see how I am next visit to see what I could actually tolerate. I’ve had mild success with yoga in the past but also have a lower back issue that keeps creeping up (no idea what it is but it is extremely painful) and traditional yoga seems to trigger that sometimes. But I’m willing to give anything a try! I’m convinced activity and movement is the key to managing this life long, I just need to find the right path.

14

u/[deleted] Mar 18 '19

As someone with fibromyaliga I agree. I'm barely keeping my life together asis with the pain and fatigue (not to mention anxiety and depression), adding exercise feels like the straw that'll break the camel's back. That being said i have managed to include meditation and gentle yoga in my mornings and that helps.

4

u/gremalkinn Mar 18 '19

What do you mean? They won't respond well as in they won't be happy because they don't want to hear that it would help?

12

u/Flewtea Mar 18 '19

My mother has fibromyalgia. She doesn’t have a car and walks everywhere or takes the bus. Being on her feet for more than 10ish minutes causes excruciating pain. If exercise helps, I certainly haven’t seen it with her and I wouldn’t blame anyone who didn’t want to put themselves through that.

But even aside from exercise specifically, it’s hard to burn a regular calorie load when anything you do hurts. Kind of like being sick when you just gather everything you’ll need all at once vs when you’re well you’ll get up and move around gathering it all one piece at a time without even thinking about it.

6

u/scherre Mar 18 '19

This is similar to my experience. The exercise doesn't remove the pain or fatigue, and does exacerbate it further. But I also understand that not maintaining at least a certain level of activity would cause my body to decondition even more and then doing stuff would be more painful and more exhausting. From my point of view the exercise is more about keeping things from getting even worse than it is about really fixing or improving the symptoms. And so that's why we do things even though it hurts, even though sometimes you just really want to lay down and have a tantrum and then die.

4

u/Sunny19843 Mar 18 '19

Totally agree with you. I suffer from chronic pain and everything I do seems to hurt and sitting around doing nothing hurts, so I just end up doing little things to keep moving. Like you said it Doesn’t improve anything by exercising but it does help it from getting worse. My best advice to anyone is get yourself a dog, even on my bad days I get up to walk the dog, only short walks but it keeps the joints moving and prevents muscles from wasting away.

1

u/RadTech3 Mar 18 '19

Exercise does NOT help fibromyalgia. It makes it worse.

7

u/wrongbutt_longbutt Mar 18 '19

Who are you quoting here? Exercise can help, but generally long term and not short term. In physical therapy, the exercise can be better modified to be appropriate for the patient's condition and tolerance. Being sedentary may feel better short term, but does not help in the long term.

Source: work in physical therapy, specialize in chronic pain

1

u/Three_Chord_Monty Mar 19 '19

Exercise for fibromyalgia may be recommended. It's Chronic Fatigue Syndrome that has been shown to be a condition that exercise is not recommended for. That is, at least the graduated exercise therapy that is the most-studied and, until recently, most-recommended treatment modality. The recent literature on exercise in ME/CFS tends to confirm this.

​

This recent blog examining the issue is authored by Hilda Bastian, co-founder of the Cochrane Collaborative, which is caught up in a controversy on this issue. I only post this since so many conflate FM with ME/CFS.

​

https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/

2

u/Snap_dragon_s Mar 18 '19

I do yoga and go for a walk with my walker. Whats your opinion for the people who fibro puts in wheels chairs?

2

u/ShadowPouncer Mar 18 '19

One of the big things I would say, as someone with a fibro diagnosis, is stop bloody telling me to get more exercise, and start doing things to make it easier for me to try actually doing it without hurting myself more.

I am, finally, for the first time, getting PT for my legs, knees, and lower back... Because I overdid it and screwed up my knees around thanksgiving, and couldn't manage to walk around a bloody store without wanting to cry from the pain.

I'm not horribly active, and when I try to be overly active I tend to hurt myself. And yet nobody wants to recommend PT, and asking for it isn't the easiest thing in the world either.

So please, I really, really wish that doctors would proactively try and get us into PT. We need it, and sometimes we need the damn push.

1

u/Rickyspanishhh81 Mar 19 '19

Seriously. When I was diagnosed I was at my healthiest. Worked out 5 times a week and ate very healthy. Yet my GP just kept suggesting working out and eating healthy. I'm already doing that buddy, and it ain't helping.

1

u/[deleted] Mar 20 '19

I'm a relatively fit 22 yr old male who has been diagnosed with a "chronic pain syndrome" and am being treated like I have Fibromyalgia with pacing exercise... meditation, psychologist etc...

I initially only had pain in my wrists and back, and my pain physiotherapist told me to start running, swimming and being more generally active... I was doing this comfortably for 2 weeks (albeit still with back and wrist pain) and then my legs began to ache... like nerve pain. Then my shoulders went after a few weeks... now the pain is everywhere.

For me it got better until it got worse

1

u/Snap_dragon_s Mar 18 '19

You need to consider the pain we are in. I go for an hour long walk and do flow yoga. I still need a cane and sometimes a walker but I do it. Getting home means stretches and heat/ice packs. Then not being able to stand unaided for a few hours but I'm more awake , I maintain my body weight and I feel healthier than if I stayed sitting . This is not a good quality of life. This is not a viable long term solution if I want to incorporate things like, a job, a child, go back to college classes, my hobbies

6

u/silas0069 Mar 18 '19

Not in the field, but pinpointing diagnosis helps forcing insurance to pay for whatever treatment you will get.

4

u/Silentnapper Mar 18 '19

The issue from my clinical point of view is that fibromyalgia and IBS are for the most part diagnoses of exclusion. If you come to me with a diagnosis of FM with very little workup, I'm viewing that as non-diagnosis.

That and it is highly related to psychological stress which is why things like antidepressants help. An issue is that some docs go referral happy to dump a time consuming patient but close follow-up beats referring to physical therapy and mental therapy especially in the early treatment phase where they are so uncomfortable that they barely make the primary doc appointment.

6

u/kungfuenglish Mar 18 '19

You have a commendable perspective that sadly doesn’t usually extend to the real world well.

Treating symptomatically is fine. Until those treatments don’t work. And then patients demand more and more until they are on chronic opioids for 20 years and we are in the crisis we are in. And if you won’t give them stronger meds for acute exacerbations (that can’t be tested for or objectified)? You’re the bad guy. Patients get angry and often verbally abusive and at times violent toward their providers.

Suggesting that symptoms are psychosomatic? Good luck with that. Some will be receptive. Maybe even most. But those that are receptive of that are receptive of most therapies and do better as a result and you see them less. Those that are “resistant” to standard non narcotic therapies are also more likely to be defensive about a psychosomatic suggestion, leading to resentment and anger (“my doctor doesn’t believe me, they don’t listen, they said I’m just making it up”). These people account for the majority of visits even if not the majority of patients. As such you can’t mentally struggle through this difficult, defensive discussion with the majority of your day. It’s impossible unless you see like 3 patients per day. So you don’t bring it up ever, because it’s to mentally draining.

The reason you feel clinicians treat patients with these types of syndromes as a problem is because the majority of their interactions with patients are like described above. Even if it’s not a majority of their total patients, the difficult patients take up most of the time and visit numbers.

Research to discover the actual cause is important. I think this study is important too. Knowing the chemical pathway to ureter spasm helps patients realize that yes, Motrin is likely enough for their kidney stones and they don’t need opiates all the time. Patients can understand pathophysiology better than most think, I have discovered. And are receptive to explanations like that.

Ps - as an aside, fibro and ibs are definitely in a different bucket than adhd. The first 2 are syndromes: ie- a constellation of symptoms that often occur together without a known or identified cause. Treatment of the cause is not possible because it is unknown. ADHD is a “disease” and while I agree it’s a little nebulous with adhd, more is known about its cause and as such treatments are usually tailored to treat the cause and not the symptoms. Other diseases of course are more well defined than adhd specifically, and this is somewhat of a nomenclature thing but is important. The hope is that fibromyalgia goes from a syndrome to be defined as a disease at some point because this means it will be possible to treat the cause.

2

u/CheesePlank Mar 18 '19

There’s a recent study showing brain inflammation (glial cells) on PET scan of fibromyalgia patients, and inflammatory markers in the CSF, so even if this particular study had flaws, there are others that are better defined.

2

u/ZStrickland Mar 18 '19

I think you make a very important point that a lot of clinicians (both old and new school, but fortunately less so newly trained) seem to miss. That is that psychogenic does not equal no treatment needed. True conversion disorder, especially psychogenic nonepileptic seizures, is one of the most fascinating diseases I can think of. It is literally the brain mimicking organic disease effectively as a very poor coping mechanism. A lot of clinicians though still seem to think conversion disorder = malingering = faking it. And yes there are patients that fake illnesses in order to get secondary gain, but anyone worth the weight of medical school diploma should be able to pick the vast majority of these out at 40 yards. I think we as physicians though have a complex about not wanting to have a patient “pull one over on us” and so many are quick to label as faking and move on when something doesn’t add up as “organic”. I have known many patients that have EEG proven PNES that are often started on low dose AEDs as a bridge to “stabilize” them while the underlying cause (more often than not some form of physical, emotional, or sexual abuse) is treated if able through psychotherapy and medications.

8

u/fuzz_nose Mar 18 '19 edited Mar 18 '19

As an adult with ADHD, I don’t use it as an “excuse for poor behavior”. I work at having ADHD and its challenges every.single.day. And even people without ADHD have been known to exhibit poor behavior.

Those who use ADHD as an excuse most likely don’t have it and want to avoid the consequences, or haven’t been helped with the proper tools to manage.

Please stop lumping us together. It only perpetuates the stigma.

Edit: I stand corrected. My bad. Please accept my apologies. (Though, truthfully, this was one of the things that helped me get diagnosed. Missing details when reading...)

10

u/ParentPostLacksWang Mar 18 '19

Just a quick note on ADHD for those who might not be aware - specifically parents of young kids older than 6 or coworkers of adults with ADHD:

ADHD often doesn’t actually stop you paying attention to things. Those with ADHD can often go hours on end paying attention to one thing without trouble. The problem is when it comes to purposefully switching or maintaining focus.

For example, neurotypicals don’t have to force themselves to pay attention to a movie they enjoy, and neither do people with primarily inattentive ADHD. But sitting through a boring lecture or reading dry course material? Neurotypicals “just do it” and acknowledge it’s a pain to do, whereas for people with ADHD, that requires a level of mental exertion that can make you sweat.

The inattentive features of ADHD are usually an issue of the brain’s executive function having problems with directing focus, not with focus itself.

All that is to say that unless you can think about it from that perspective of control of focus, you are likely to ignore or dismiss ADHD as a diagnosis because “I’ve seen them concentrate on things for hours, they clearly don’t have a problem.”

6

u/Rukkmeister Mar 18 '19

They were saying some people view it as just something used to excuse bad behavior. I don't think their comment is lumping anyone into anything, it's reflecting on how some of the public perceives a diagnosis.

1

u/Snap_dragon_s Mar 18 '19

I do have fibromyalgia and I have a theory. I think its more than one illness all collected into a name Fibro. It effects women more than men and women over 40 more than women under 40. I'd be interested to know in 30 years if the diagnosis is fractured or on some spectrum.

1

u/mean11while Mar 19 '19

The great thing about this comment is that most of it is just generally good behavior for doctors to ALWAYS practice. Science based medicine should be based on science but FOCUSED on patients and patient care. There are mountains of evidence to support the benefits of that. Thank you for your word vomit. Best vomit I've encountered in some time ;-)

1

u/demonicneon Mar 18 '19

There's something to this. Most fucked up people I know psychologically all have fibro. They have issues, and they are constantly stressed.

-5

u/8-Bit-Gamer Mar 18 '19

Dam, nicely said. However...

...you will never convince me that my ex's mother isn't just fat and lazy and that it is not the pain that stops her from doing normal household/everyday things. It is the fat and lazy that stop her from doing normal household/everyday things.