Back in March of 2013, I posted about the Fibromyalgia blood test that had just become available, nope not through your doctor, but through a company that believes they’ve isolated something that allows them to determine from your blood whether or not you have Fibro. It wasn’t something that your insurance would likely pay for anytime soon, and still isn’t. Why? Because it’s still under a lot of controversy. I’d actually completely forgotten about it until I saw this video from my friend Ken McKim over at Don’t Punish Pain. He talks about the discovery of how cytokines levels are different in patients with Fibromyalgia, specifically about the study from Dr. Gillis, who happens to be the founder of EpicGenetics, the company offering the blood test.
After seeing that video I decided I needed to take another look at the research on cytokines and Fibromyalgia, ok I needed to take a first look, because I hadn’t actually looked at the research before reporting about the blood test. What I found was that the research isn’t as cut and dry as Dr. Gillis makes it out to be. In fact, while his studies did show that there is a significant decrease in cytokines in Fibro patients when compared to healthy people, it didn’t necessarily prove that the difference was caused by fibromyalgia specifically.
What are cytokines?
Cytokines are substances secreted by cells. There are many types but particularly they play a roll in our immune system. So, if this all proves to be true it might finally lead to Fibromyalgia being labeled as an immune disease (something many have long believed anyway). This would also make sense given the overlap of Fibromyalgia with so many other immune diseases like Lupus, and RA.
The Studies
In the study by Dr. Gillis and his colleagues, 110 Fibro patients were compared with 91 healthy individuals. 8 different cytokines were measured, and on the base of just measuring in plasma alone, there was no significant different. However, differences appeared when they stimulated the cells to activate extracellular expression, using two different methods. Using one method, there was a significant difference in 6 out of 8 of the cytokines, using the other method there was a difference in 8 out of 8 cytokines. I’m not a doctor and I don’t know anything about the methods used, but a significant difference is a significant difference. So, there’s definitely something there. The question remains what that something is exactly, and how do those numbers compare to other possible issues that could be causing that difference? They did mention that there is an overlap in three of these cytokines with Sjogren’s (another immunological disorder). There is also some overlap with testing on those with depression and/ or chronic pain.
Does it really sift out fibromyalgia from other possible immune diseases and disorders? Only further study will really show this, which is likely why we won’t see the blood test approved as a means of diagnosing Fibro for a good long while.
More Research:
A 2010 review of the existing research on Cytokine production and Fibromyalgia examined 10 different studies. One really interesting thing about this paper is that it explains why doctors even began to look at cytokine function related to Fibromyalgia. Evidently, back in the 80s they started noticing the similarities of symptoms in patients with cancer, who were receiving a specific cytokine as part of their therapy, to symptoms of Fibromyalgia. The problem (as indicated in Gillis’ study) is that each study looks at different cytokines and stimulates them in different ways. So the results vary, sometimes the cytokine are significantly lower, sometimes significantly higher, and sometimes there’s no difference at all. Another issue is that when cytokine production is looked at in relation to specific symptoms (chronic pain, sleep, or depression) the results also vary.
Each cytokine seems to be associated with different symptoms, so it’s a matter of which one do you look at specifically for Fibromyalgia? Again, something that still needs more study (and is continually being studied). Another issue is that many of these studies have very small sample sizes (less than 20 patients) which makes it very difficult to have significant results.
The good news is that there may be an answer eventually, the bad news is that it’s too early to say that we have one. There is a lot of research going on related to Fibromyalgia and attempting to find the cause. It’s good and bad that the research is coming from a lot of different angles. We have research here that seems to show that Fibromyalgia may have an immunologic cause (or not), and other on-going research into the possible connection with neurological disorders.
If these types of studies do nothing else, they should encourage all of us who have been diagnosed with Fibro to take part in research. You may not want to jump on research of new meds, but if the research is an attempt to find a way to diagnose our disorder it would be worthwhile to participate. They can’t find an answer without our help.
So, is the Fibromyalgia blood test real? That remains to be seen and (IMO) it’s probably not yet worth paying the out of pocket expense to have the test done.
[Tweet “#Fibromyalgia Blood Test? Is it real? Does it work?”]
references:
1. Behm, F. G., Gavin, I. M., Karpenko, O., Lindgren, V., Gaitonde, S., Gashkoff, P. A., & Gillis, B. S. (2012). Unique immunologic patterns in fibromyalgia. BMC Clinical Pathology, 12(1), 25-31. doi:10.1186/1472-6890-12-25
2. Menzies, V., & Lyon, D. (2010). Integrated review of the association of cytokines with fibromyalgia and fibromyalgia core symptoms. Biological Research For Nursing, 11(4), 387-394. doi:10.1177/1099800409348328
Melissa says
I tweeted to see if others with Fibro have had the Varicella titre test and, if so, do they know their number. I’m betting most people only know if they’re positive or negative. I know my number because I request a copy of all lab work results to be sent to me. It won’t help me because I’m quite far into the Fibro thing but, maybe it could be part of the answer. Maybe treatment could be started much sooner or maybe anti-virals could be prescribed. I think most people with Fibro were diagnosed years into their illness. Quicker diagnosis could make a difference and maybe prevent it from becoming debilitating and/or prevent the development of comorbid illnesses. Anyway, it was worth the tweet. I hope I get a lot of responses and we find out, one way or the other, if anyone other than me has a very elevated antibody level.
Melissa says
If it is related in some way to that virus family, it could certainly explain my VERY high chickenpox titre. Have you had that blood test? Imagine if that’s the answer…the test for chickenpox antibodies? What if my extremely high antibody results could be found in other Fibro patients who are as far along in the illness as I am?
Julie says
I’ve not had that bloodtest, but I did have chickenpox (and a pretty good case of it) when I was about 5. I do have HSV1 and have had mono multiple times. I’ve long believed it’s related to that. Ever since I had mono as a teen whenever I get stressed or just tired out it returns, my glands swell up, and I feel like crap. About 8 years ago I started getting strep every few weeks and actually got a dr to test me for mono again (after having several say “no you can’t get it again once you’ve had it” which is BS) and it came back positive. So, I know I’ve had it at least twice and I definitely believe many more times than that. But like all of the herpes virus families once youv’e been exposed the virus lies dormant in your nerves just waiting for whatever it is that triggers it (and stress is a common trigger on all of the viruses in that family).
Melissa says
It’s really interesting to me…I had strep 2x per year from pre-K all the way through to and including my senior year of high school. My entire life, the lymph nodes in my right arm pit and under the ride side of my jaw swell each time I’m sick. Since Fibro began in 2003, those lymph nodes swell even if I get a bad scatch or if I’m under a lot of stress.
I wonder about strep; could it be a common denominator for those of us with Fibro?
Like I said, when I can mentally remove myself from the situation, Fibromyalgia is a fascinating illness.
Julie says
There are so many possibilities out there that could be common denominators. There’s definitely something going on and so much more research they need to do.
Melissa says
The only test that I know of which can spot Fibromyalgia is an MRI of the brain. Here’s a link to NIH information: http://www.ncbi.nlm.nih.gov/m/pubmed/23982850/
Julie says
I have never heard of an MRI showing Fibromyalgia. I will have to look into that further.
Julie says
Reading the abstract that’s not so much a test for Fibro as that they applied pain and did an MRI at the same time and it showed enhanced brain activity on the Fibro patients (during long exposure to pain) than in the healthy people. All it really shows is that we feel pain differently.
Melissa says
There’s this one showing decreased connectivity in the Fibro brain which makes sense given that pain is processed by the brain.
“The parietal operculum has also been frequently implicated in the response to painful stimulation. The investigators found that individuals with fibromyalgia have decreased regional connectivity within portions of the parietal operculum, including the primary somatosensory cortex and the secondary somatosensory cortex, compared with control subjects.”
http://www.the-rheumatologist.org/details/article/6447621/Fibromyalgia_Pain_Associated_with_Changes_in_Brain_Connectivity.html
Julie says
I have seen those studies. Problem is the testing requires painful stimulation to get any results, so it’s not just a standard MRI test like say looking for lesions to dx MS. The requirement of inflicting pain as part of the test would likely keep it from ever becoming anything standard as far as testing goes. Those types of studies are more about trying to prove that it’s neuro rather than rheum. There are so many studies looking at Fibro from so many different directions. So often different ones show different results (based on what they are looking at/ for) so it may actually be making it more difficult to come to a conclusion. I think part of it may be that Fibro may be a multitude of other things just minus positive test results (eg. Lupus / RA/ MS / Thyroid in the body but it hasn’t shown up in blood tests yet). Just looking at the # of Fibro people who eventually test positive for one of those, definitely leads one to wonder. Basically levels of anything (as far as tests go) are based on “norms”, so the normal/ average is X, but perhaps a single person’s normal is lower or higher than the average, if they are too far on one of the curve it would cause existing problems not to show up in their blood work until a lot later (If at all).
Julie says
I had actually posted on one of the fMRI studies a while back: https://countingmyspoons.com/2010/08/new-study-shows-fibromyalgia-may-be-a-neurological-disorder/
Melissa says
I feel like a freak a lot. My blood work is almost always good. I’ve had my white count, IGg, IGm, sed rate tested…all come back right in the middle of normal. Did I tell you I had bloodyest for chickenpox titre? Neither my mother nor I remember having chickenpox. Both my brothers had it. The doctor said I could’ve had just one mark hidden on my scalp and just felt like I had a regular virus. So, had blood test. Doctor figured it would come back positive. Not only did it come back positive for the antibodies but, it came back more than 3x the high end of positive. The GP wonders as do I if the Fibro is playing a role in the immune response. It annoys me that Fibro is not grouped in with auto immune illnesses. I know that lack of sufficient REM sleep plays a big part in the body not being able to efficiently fight off viruses and infection. That would make us more susceptible to infection and for the illnesses to take longer to be done. But, then there are allergies. It seems that allergies are a common symptoms or comorbid ailment for Fibro patients. Allergies are a type of immune response. I don’t know. I know I’m not alone in being frustrated that our diagnosis begins with eliminating the illnesses Fibro mimics. How is it possible that there’s STILL not a proper test for us? Maybe by the time we’re symptomatic, our numbers return to normal….sort of like what happens with Lyme Disease. I have a feeling it’ll be a Fibro patient/researcher who finally solves the puzzle. We seem to inheritantly understand our illness better than most dictors
Julie says
My theory (and the current research out of UA is kind of backing this) is that Fibro is a latent virus in the Herpes family (Chickenpox, mono, etc), which fits because Herpes lives in the nerves and we know that there’s an issue in our nervous response. I’m really looking forward to reading more about what they are doing as this particular research heads into Stage 3 (post coming next week on this topic).
Melissa says
I tweeted to see if others with Fibro have had the Varicella titre test and, if so, do they know their number. I’m betting most people only know if they’re positive or negative. I know my number because I request a copy of all lab work results to be sent to me. It won’t help me because I’m quite far into the Fibro thing but, maybe it could be part of the answer. Maybe treatment could be started much sooner or maybe anti-virals could be prescribed. I think most people with Fibro were diagnosed years into their illness. Quicker diagnosis could make a difference and maybe prevent it from becoming debilitating and/or prevent the development of comorbid illnesses. Anyway, it was worth the tweet. I hope I get a lot of responses and we find out, one way or the other, if anyone other than me has a very elevated antibody level.