Ok, so I wish I could stop going on angry rants on this blog. But, ironically, some of my rants have turned out to be among my most popular posts… so I’m going to keep going with this one.
One of the things that bothers me most about the majority of the online content regarding fibromyalgia is the idea that fibromyalgia sufferers must fight inflammation.
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Before I go any further, let’s talk about inflammation for a little while. In general, I think it makes sense to break inflammation down into two categories: localized inflammation and systemic inflammation. Localized inflammation occurs in one specific part of your body: you have a wound that’s healing, or you have tendinitis in your elbow.
Systemic inflammation, on the other hand, is a whole-body thing, and usually takes place as some sort of disease process. For example, lupus is “an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body.”
Decades ago, when researchers first began to look at fibromyalgia, they suspected that some sort of systemic inflammation might be involved. They questioned whether fibromyalgia might be an auto-immune condition, such as lupus or rheumatoid arthritis. They were looking for some sort of obvious physical changes in the body; looking for inflammation in the joints, and focusing on on the idea of “tender points.”
Yet none of this research really revealed any of the physical signs they were looking for. Basically, doctors couldn’t find anything “wrong” with fibromyalgia sufferers. For a while, doctors measured the number of “tender points” on a patient’s body, but as this 2010 American College of Rheumatology briefing asserts, the tender point test has been shown to not be a reliable means of diagnosing fibromyalgia.
As researchers began to rule out the idea of fibromyalgia being some sort of autoimmune or inflammatory condition, they began to pick up on the idea of central sensitization. Proposed by scientist Clifford Woolf in 1983, the idea of central sensitization is that people’s nerves can be altered by an extremely painful physical experience. The way these nerves function can change in response to this experience and leave the person with a heightened sensitivity to pain. This heightened sensitivity persists, even after the initial injury has healed.
Now most scientists believe central sensitization to be the cause of fibromyalgia. While there are a lot of things we don’t yet know about it, what we do know is that it is not caused by an abnormal inflammatory response, like rheumatoid arthritis or lupus. This is why fibromyalgia sufferers have historically been dismissed by doctors—by all objective diagnostic tests, we appear normal.
The fact that so many fibromyalgia sufferers have been dismissed by doctors is what makes us so susceptible to frauds, fads, and bad information.
I can’t even count the number of times I’ve been reading an article on the Huffington Post or ABC news and seen a “Suggested Article” at the bottom screen that reads something along the lines of “Problem with inflammation? You might have Fibromyalgia.”
I’m here to tell you that no, you don’t. Chronic systemic inflammation is not a symptom of fibromyalgia.
There are simple blood tests which doctors use to determine whether or not a patient has a problem with systemic inflammation. C-reactive protein and erythrocyte sedimentation rate are two of the most basic measures of inflammation.
If you are concerned about your health, go to your doctor and ask for these blood tests. If this is a problem that’s been going on for a long time, chances are he or she has probably already ordered them. You can always ask for them again– I don’t remember ever having to pay some sort of huge copay for them, as they’re pretty basic– but if they come back normal, you do not have a problem with inflammation.
For the first few years after I developed chronic pain, I spent a lot of time wondering if I had a problem with inflammation, thanks mainly to the erroneous information I found in the Internet. None of the doctors I saw ever seemed to take me seriously. After I took an anatomy class and learned about the tests that can measure inflammation, I realized why. I had had these blood tests performed several times a year, and the results were always normal.
This is why I get so angry about these articles and websites that just seem to prey on people’s fears. I spent years worrying if I was on the road to developing lupus or arthritis or any number of autoimmune conditions, thanks in large part to the misinformation these people spread.
Let’s not be victims of unethical marketing tactics. If you have a problem with chronic, persistent pain, ask your doctor for the blood tests I mentioned. If they come back normal, you are going to be okay. If they come back abnormal, it is time to see a specialist. The thing to remember is that there are treatments for autoimmune and inflammatory conditions. If your inflammatory response is so messed up that you need treatment, it will show up on a blood test. Otherwise, thank your lucky stars and start reading up about how to work with a sensitized nervous system.
**The picture above is actually of a blood sample taken from a dog. How cool is that? Thank you to Nottingham Vet School for putting it on Flickr.
Lucy Phillips
March 19, 2013 at 5:55 pmThanks Sunlight – really useful post. Im bloody sick of hearing about inflammation from every other complementary practitioner, and always suspected that if they did a crappy tender point test on me Id fail it. Excellent rant. 😉
sunlight in winter
March 19, 2013 at 10:01 pmThanks Lucy. Agreed… I would definitely fail the tender point test too.
Lucy Phillips
March 19, 2013 at 5:55 pmThanks Sunlight – really useful post. Im bloody sick of hearing about inflammation from every other complementary practitioner, and always suspected that if they did a crappy tender point test on me Id fail it. Excellent rant. 😉
sunlight in winter
March 19, 2013 at 10:01 pmThanks Lucy. Agreed… I would definitely fail the tender point test too.
helenlear
March 19, 2013 at 9:50 pmThanks Sunlight for a great post. I am currently inbetween diagnoses – At first it was thought that I have Lupus and I have been treated for that for the past year or so. The treatment wasn’t working. A new specialist is considering the possibility that it is Fibro based on the fact that my inflammation levels in those tests you mentioned have only ever borderline. Now I’m reducing my prednisone the severe joint pain is coming back though – weird eh? Time will tell.
sunlight in winter
March 19, 2013 at 10:03 pmI’m glad you liked the post! I wish I had something more helpful to say about your situation specifically– that sounds really tough. I hope you get an answer soon!
helenlear
March 19, 2013 at 9:50 pmThanks Sunlight for a great post. I am currently inbetween diagnoses – At first it was thought that I have Lupus and I have been treated for that for the past year or so. The treatment wasn’t working. A new specialist is considering the possibility that it is Fibro based on the fact that my inflammation levels in those tests you mentioned have only ever borderline. Now I’m reducing my prednisone the severe joint pain is coming back though – weird eh? Time will tell.
sunlight in winter
March 19, 2013 at 10:03 pmI’m glad you liked the post! I wish I had something more helpful to say about your situation specifically– that sounds really tough. I hope you get an answer soon!
jezzybel
March 19, 2013 at 11:01 pmI don’t think there are specific tests for central sensitization, but the current way of identifying it (if you’re interested) is looking for the presence of allodynia (usually non-painful stimuli become painful) and hyperalgesia (things hurt more than they would normally be expected to). Not definitive, but a good general guide.
I have no idea where in my giant stack of articles I saw this, so it is entirely possible I’m wrong (I’ll get back to you if I find a source) but I thought inflammation was one of the neurological processes involved in central sensitization – something about the neuroglia not doing their job properly? No idea if that is universal or just common though, and as always, difficult to tease out correlation and causation. One of the treatment avenues researchers are looking into to re-wire neurological chronic pain processes (or rather, undo the initial re-wiring that caused them!) are drug treatments targeting neuroglia function.
I find it all fascinating – I’m becoming such a pain nerd! 🙂
sunlight in winter
March 20, 2013 at 12:11 amHey jezzybel, thanks for bringing up so many interesting points.
Regarding the “tests” for central sensitization — I am optimistic that someday we will be able to use functional MRI’s to diagnose chronic pain/central sensitization. There are a few promising research groups I’ve heard that are currently using these functional MRI’s (aka fMRI’s) in an experimental setting. Check out http://www.ted.com/talks/christopher_decharms_scans_the_brain_in_real_time.html It’s exciting because there may be a point in time at which doctors can no longer brush us off or accuse us of exaggerating– the results will be right there on the screen.
And as for the role of inflammation in central sensitization: you might very well be right. I hadn’t heard that before, but after I read your comment I did some searching and found this great full-text article about immune system involvement in central sensitization: http://physrev.physiology.org/content/82/4/981.long
I wrote this post to reassure people that, as long as their bloodwork is normal, they do not have a problem with systemic inflammation, aka an autoimmune disease. But I am certainly open to the possibility that some sort of localized inflammation, within the nervous system, can be a factor. Hopefully, like the other aspects of fibromyalgia, someday we will have a way to measure or test for that as well…
jezzybel
March 20, 2013 at 12:21 amWe can hope! It seems like such an exciting time for chronic pain research – it makes me hopeful that, if not in my lifetime, my future kids might be helped by improved diagnostic and treatment options if they inherit their mum’s dodgy genes 🙂
jezzybel
March 19, 2013 at 11:01 pmI don’t think there are specific tests for central sensitization, but the current way of identifying it (if you’re interested) is looking for the presence of allodynia (usually non-painful stimuli become painful) and hyperalgesia (things hurt more than they would normally be expected to). Not definitive, but a good general guide.
I have no idea where in my giant stack of articles I saw this, so it is entirely possible I’m wrong (I’ll get back to you if I find a source) but I thought inflammation was one of the neurological processes involved in central sensitization – something about the neuroglia not doing their job properly? No idea if that is universal or just common though, and as always, difficult to tease out correlation and causation. One of the treatment avenues researchers are looking into to re-wire neurological chronic pain processes (or rather, undo the initial re-wiring that caused them!) are drug treatments targeting neuroglia function.
I find it all fascinating – I’m becoming such a pain nerd! 🙂
sunlight in winter
March 20, 2013 at 12:11 amHey jezzybel, thanks for bringing up so many interesting points.
Regarding the “tests” for central sensitization — I am optimistic that someday we will be able to use functional MRI’s to diagnose chronic pain/central sensitization. There are a few promising research groups I’ve heard that are currently using these functional MRI’s (aka fMRI’s) in an experimental setting. Check out http://www.ted.com/talks/christopher_decharms_scans_the_brain_in_real_time.html It’s exciting because there may be a point in time at which doctors can no longer brush us off or accuse us of exaggerating– the results will be right there on the screen.
And as for the role of inflammation in central sensitization: you might very well be right. I hadn’t heard that before, but after I read your comment I did some searching and found this great full-text article about immune system involvement in central sensitization: http://physrev.physiology.org/content/82/4/981.long
I wrote this post to reassure people that, as long as their bloodwork is normal, they do not have a problem with systemic inflammation, aka an autoimmune disease. But I am certainly open to the possibility that some sort of localized inflammation, within the nervous system, can be a factor. Hopefully, like the other aspects of fibromyalgia, someday we will have a way to measure or test for that as well…
jezzybel
March 20, 2013 at 12:21 amWe can hope! It seems like such an exciting time for chronic pain research – it makes me hopeful that, if not in my lifetime, my future kids might be helped by improved diagnostic and treatment options if they inherit their mum’s dodgy genes 🙂
failedadventures
March 20, 2013 at 8:48 pmVery interesting point Sunlight! But that is also what makes fibro so difficult. I have been regularly getting C-reactive protein testing and been consistently high for quite a few years, but all tests regarding auto-immune diseases, arthritis, etc come back negative. My dr explained it as an extension of fibro- not an initial symptom, but caused by other symptoms. She also cited that c-reactive protein is very easily influenced by things as simple as (although still painful) gut inflammation due to heightened food sensitivities, which was a result of my fibro symptoms. So it just goes round and round. But it was a very insightful post explaining the difference between to two. I really didn’t know that before! And I would definitely fail the tender point test on a day-to-day basis, so I am excited to see diagnosis developing further.
sunlight in winter
March 21, 2013 at 3:10 pmThanks for your comment. I’m glad my post was interesting, although I wish I knew enough to be able to address situations like yours, where things aren’t as clear cut.
I do think it’s fair to say that these tests are very inspecific, as you well know. They will tell you if something in your blood measures out of the normal range, but they won’t tell you why. I think that’s why doctors never just order one type of test when looking for inflammatory conditions. There are several different markers of inflammation that they can look for, and the results of these different tests put together is what allows them to get a better sense of the overall picture.
Your comment made me realize that there is a lot that I don’t know about these tests (which is why no one should ever take the things I write on my blog in the place of medical advice!). But I re-read the article I linked to on the c-reative protein test, and it mentions that sometimes women can get a high reading on that test if they are on the birth control pill. Not sure if that applies to you, but I thought it was worth mentioning. http://www.nlm.nih.gov/medlineplus/ency/article/003356.htm
failedadventures
March 20, 2013 at 8:48 pmVery interesting point Sunlight! But that is also what makes fibro so difficult. I have been regularly getting C-reactive protein testing and been consistently high for quite a few years, but all tests regarding auto-immune diseases, arthritis, etc come back negative. My dr explained it as an extension of fibro- not an initial symptom, but caused by other symptoms. She also cited that c-reactive protein is very easily influenced by things as simple as (although still painful) gut inflammation due to heightened food sensitivities, which was a result of my fibro symptoms. So it just goes round and round. But it was a very insightful post explaining the difference between to two. I really didn’t know that before! And I would definitely fail the tender point test on a day-to-day basis, so I am excited to see diagnosis developing further.
sunlight in winter
March 21, 2013 at 3:10 pmThanks for your comment. I’m glad my post was interesting, although I wish I knew enough to be able to address situations like yours, where things aren’t as clear cut.
I do think it’s fair to say that these tests are very inspecific, as you well know. They will tell you if something in your blood measures out of the normal range, but they won’t tell you why. I think that’s why doctors never just order one type of test when looking for inflammatory conditions. There are several different markers of inflammation that they can look for, and the results of these different tests put together is what allows them to get a better sense of the overall picture.
Your comment made me realize that there is a lot that I don’t know about these tests (which is why no one should ever take the things I write on my blog in the place of medical advice!). But I re-read the article I linked to on the c-reative protein test, and it mentions that sometimes women can get a high reading on that test if they are on the birth control pill. Not sure if that applies to you, but I thought it was worth mentioning. http://www.nlm.nih.gov/medlineplus/ency/article/003356.htm
roweeee
March 21, 2013 at 5:43 amI am lo0oking forward to reading your blog further. I have a chronic auto-immune disease but my brother has fibromyalgia and if there is anything that could help him, I would be most grateful.
sunlight in winter
March 21, 2013 at 2:54 pmWelcome to my blog! I hope the things I write can be of some help.
roweeee
March 21, 2013 at 5:43 amI am lo0oking forward to reading your blog further. I have a chronic auto-immune disease but my brother has fibromyalgia and if there is anything that could help him, I would be most grateful.
sunlight in winter
March 21, 2013 at 2:54 pmWelcome to my blog! I hope the things I write can be of some help.
~K
February 23, 2016 at 12:39 pmI’m so glad I came across your blog. I’m really intrigued by this post because I suffer from high inflammation in my body. I initially went to my doctor more than 5 years ago with symptoms of fibro, only to be brushed off. More recently in this past year, I’ve experienced the worst inflammation I’ve ever had in my life and knew something was wrong. I went in to my doctor’s office with an even longer list of symptoms and he sent me to the lab for blood work. Sure enough, my sed rate is higher than than the given 0-20 range it should be in. So what happens from here? I don’t know. I merely got a call back from the doctor’s office and the nurse shared that because he ruled out other things like lupus, arthritis, etc., it “most likely” is fibro. I didn’t receive any type of explanation of anything, and only got a referral to go to a specialist. I continue to have my questions unanswered regarding the inflammation and if it’s truly a symptom of fibro or if it’s something else. I have a SLEW of other health things going on that I feel are related, but I’m finding that no one is taking the time to connect the dots. Just me. So thank you for sharing this blog post, It’s motivating me to continue my own research and perhaps, too, other practitioners who will listen to me and actually explain what’s happening. I’m looking forward to reading more of your posts! <3
sunlight in winter
February 23, 2016 at 5:46 pmHi K., thanks so much for your kind comment! I’m so sorry you’re going through all this. I’m really glad you find my blog helpful, and I hope you get answers soon! In my experience, specialists are often able to give better explanations for certain conditions than general practitioners are– hopefully this turns out to be the case for you too!
You might find this article helpful: http://emedicine.medscape.com/article/329838-workup It’s a list of tests used to rule out other conditions which have similar symptoms to fibromyalgia, and it has a section on sed rate.
Best of luck on your search! Feel free to let me know if you have any questions!
~K
February 23, 2016 at 5:51 pmThanks so much for your kind response, I appreciate it! 🙂 And thank you for the link and information! I look forward to learning more!
~K
February 23, 2016 at 12:39 pmI’m so glad I came across your blog. I’m really intrigued by this post because I suffer from high inflammation in my body. I initially went to my doctor more than 5 years ago with symptoms of fibro, only to be brushed off. More recently in this past year, I’ve experienced the worst inflammation I’ve ever had in my life and knew something was wrong. I went in to my doctor’s office with an even longer list of symptoms and he sent me to the lab for blood work. Sure enough, my sed rate is higher than than the given 0-20 range it should be in. So what happens from here? I don’t know. I merely got a call back from the doctor’s office and the nurse shared that because he ruled out other things like lupus, arthritis, etc., it “most likely” is fibro. I didn’t receive any type of explanation of anything, and only got a referral to go to a specialist. I continue to have my questions unanswered regarding the inflammation and if it’s truly a symptom of fibro or if it’s something else. I have a SLEW of other health things going on that I feel are related, but I’m finding that no one is taking the time to connect the dots. Just me. So thank you for sharing this blog post, It’s motivating me to continue my own research and perhaps, too, other practitioners who will listen to me and actually explain what’s happening. I’m looking forward to reading more of your posts! <3
sunlight in winter
February 23, 2016 at 5:46 pmHi K., thanks so much for your kind comment! I’m so sorry you’re going through all this. I’m really glad you find my blog helpful, and I hope you get answers soon! In my experience, specialists are often able to give better explanations for certain conditions than general practitioners are– hopefully this turns out to be the case for you too!
You might find this article helpful: http://emedicine.medscape.com/article/329838-workup It’s a list of tests used to rule out other conditions which have similar symptoms to fibromyalgia, and it has a section on sed rate.
Best of luck on your search! Feel free to let me know if you have any questions!
~K
February 23, 2016 at 5:51 pmThanks so much for your kind response, I appreciate it! 🙂 And thank you for the link and information! I look forward to learning more!