Fibromyalgia (FM), of course, is much more than about pain. Called the “prototypical functional pain syndrome,” people with fibromyalgia often experience problems thinking (fibro-fog), sleep and autonomic nervous system problems, depression and catastrophizing. The multidimensional aspects of fibromyalgia suggest that more than one part of the brain must be involved.
There’s pain and then there’s the added problems that often come with pain – distress, anxiety and worry
There’s also more to pain that just pain. Pain can be accompanied by catastrophizing thoughts and feelings of unpleasantness that are separate from the pain itself. These “pain plus” symptoms are common in fibromyalgia, and they imply different areas of the brain are affected as well.
This study sought to understand both where the pain problems and pain plus symptoms that can make pain so much worse come from in fibromyalgia.
The somatosensory link: S1 functional connectivity is altered by sustained pain and associated with clinical/autonomic dysfunction in fibromyalgia. Jieun Kim, PhD1,5*, Marco L. Loggia, PhD1,2, Christine M. Cahalan, BS2, Richard E. Harris, PhD3, Florian Beissner, Dr. phil. nat.1,4, Ronald G. Garcia, MD, PhD1,8,Hyungjun, Kim, PhD1,5, Ajay D. Wasan, MD, MSc6, Robert R. Edwards, PhD2,7,#, and VitalyNapadow, PhD1,2,9,#, Arthritis & Rheumatology DOI 10.1002/art.39043
A multi-center effort from researchers from Harvard, Michigan, Korea, Colombia, and Germany examined how the pain and other symptoms of FM are linked in the brain. First they used brain imaging to examine the status of the somatosensory cortex – a part of the brain that processes “somatic” or sensory signals – in relation to other parts of the brain at rest.
Then they wrapped a pressure cuff around their lower leg and inflated it enough to cause the pain receptors in their deep muscle tissues to flare up for six minutes. As they did so they repeated the brain scans.
First they examined how active the connections between the somatosensory regions of the brain that process sensory signals in the leg, back, face, finger and hand were. Then they examined how active the connections between the somatosensory region and parts of the brain involved in pain catastrophizing and autonomic nervous system functioning were.
Results
As expected the FM patients experienced pain at a much lower cuff pressure than did the healthy controls.
The widespread pain the FM patients came in with suggested that the activity between the different regions of the somatosensory cortex would be increased. After all, the experience of pain in different areas of the body should show up as increased activity in different areas of the somatosensory cortex. Oddly enough, though, reduced activity was found.
The opposite pattern occurs in healthy people. Being exposed to the same pain stimulus over time, causes the strength of the connections between the different sub-regions of their somatosensory cortex to increase. As that happens their sensitivity to the pain decreases.
The opposite is happening in fibromyalgia.
Insula – A Key Brain Region in Fibromyalgia
Evoking pain with the pressure cuff indicated that a strong communication stream opened between somatosensory cortex and a part of the brain called the insula in the FM patients – but not the healthy controls. For some reason, the heretofore underactive somatosensory cortex appeared to be pounding the insula with information.
The somatosensory – insula connection appears to be enhancing distress levels from pain sensations and from stimuli such as light, noise, etc.
In the healthy controls, however, the pain opened up a connection to a part of the brain called the SPL associated with “attention processing”. That suggested that the healthy controls were noticing the pain more but they weren’t emotionally rocked by it. Their brains were simply keeping an eye on it.
Just six months ago a similar pattern involving sensory distress in fibromyalgia appeared. Exposing FM patients to light, sound and noise produced a slowed somatosensory activation followed by activation of the insula – and the production of unpleasant sensations.
In 2013 evidence suggested the “gates” in the brainstem that filter out sensory signals are broken in fibromyalgia. Bansai, interestingly enough, believes the same process is at work in ME/CFS patients, in particular, very severely ill patients who are unable to tolerate stimuli.
- Sensory Overload: Study Suggests Brains in Fibromyalgia Are Being Pummeled With Too Much Information
Pain Plus
It’s at the insula or the connections to the insula that a host of problems kick in worsening everything. The emotional toll that pain can bring such as catastrophizing, anxiety and worry appear to be associated with the somatosensory cortex- insula connection in FM.
Autonomic Nervous System – Again…
“Thus, anterior insula connectivity to S1 appears to play a crucial modulatory role in not only hyperalgesia and temporal summation, but also autonomic responsivity to evoked pain, which may reflect elevated levels of clinical pain severity and pain catastrophizing.” Authors
Researchers usually stop at the psychological ramifications of pain when discussing the insula, but it is also one of the two main autonomic nervous system (ANS) regulators in the brain.
As the pain stimulus continued the connectivity to the right anterior part of the insula continued to build. (This part of the insula is responsible for regulating the autonomic response to external sensory signals). As that happened, the FM patients experienced further reductions in their ANS stability and increased emotional distress. That suggested that activation of this one part of the insula is responsible for both the autonomic nervous system dysregulation and emotional distress found in FM.
The longer the pain lasted the more unstable the autonomic nervous system became and the distressed the FM patients became
It’s possible that the emotional hit experienced and the autonomic nervous system dysregulation found in FM are all of a piece; when you get one – you get the other. That’s simply the consequence of activating this one part of the brain.
Since the connection to the insula was also associated with ever increasing pain as the pain stimulus continued, the insula is also implicated in episodes that increase pain sensitivity in FM.
Interestingly, the connection between the pain catastrophizing and insular activation was not seen during rest. It only occurred when the pain response was being evoked – and the autonomic nervous system was being triggered.
Speculation From a Layman
We could be seeing breakdowns all along the sensory processing circuits in both fibromyalgia and chronic fatigue syndrome. It may start at damaged neurons (small fiber neuropathy) or over-active receptors in the muscles (the Lights work) that send sensory signals zinging to the brainstem – breaking it down. The somatosensory cortex reacts to the subsequent information overload by down-regulating itself – allowing the insula to get hard. In another pathway from the brainstem the prefrontal cortex buckles results in amygdala activation.
Could sensory system overload be at the heart of FM and ME/CFS?
Blasting the insula and amygdala – the two main autonomic nervous regulators in the brain – kicks off or exacerbates the autonomic nervous system problems, interferes with sleep and cognition, and increases the emotional burden of the disorder. The fight-flight system is turned on leaving FM and ME/CFS patients unable to fully rest and heal.
This study and others suggest that the distressing wired and tired aspect of ME/CFS and FM that leaves one on edge, feeling emotionally fragile and exhausted, could be a function of autonomic nervous system dysfunction.
At last the proccesses are being identified that are so difficult to explain to non sufferers. thank you
This matches my experience to a tee. I was diagnosed first with small fiber neuropathy, then autonomic. Many of the lesser symptoms (e.g. restless legs, numbness, aching, fatigue) had been going on for years, but after I “got sick,” it was as if everything suddenly channeled thru one systemic location. Aches and pains were one thing — and I could usually push through them — but at some point they all became connected.
If I were reading this post as a non-sick person I would be tempted to conclude that FM sufferers (etc) were constitutionally overly sensitive, whereas, in my experience, it wasn’t until some switch suddenly went off that I could no longer bounce back from the stimuli, stresses, and pains that had been manageable in the past.
So on target. Same here. Like a car who’s engine is revved, but you can’t kick it down to idle. But now it’s a constant state. Leading to exhaustion, emotional fragility, anxiety, and the crazy seemingly unrelated symptons are all tied in, somewhere. Doctors can’t treat appropriately until the cause is truly identified. Meanwhile, we are treated with meds in an effort to make symptoms manageable. If I’m at 75%, that doesn’t sound bad. It’s trying to live life, everyday, at 75% that becomes overwhelming. The never getting a sound night’s sleep, that restorative interlude that the human body needs, and probably continues to erode what we do have left.
Very well stated! I actually copied the last paragraph because it’s so wonderfully conveyed my own thoughts! And Cort, thank you so much for all you do. You work tirelessly to digest complex material and present it in a way that we can all understand and relate to.
Thanks Jodi!
Good article Cort. I do need to have a diagram of the brain tho to follow along:)
This is exactly what is going on with me now and in a very big way! I get it! I’m in it!!!
This also describes me to a tee. Physical pain as well as emotional distress comes and goes regularly.
I will never forget when the disconnect happened for me. It was November 1996, within the course of one week, I was changed. I hope and pray that this research can mend the circuits that need mending, so myself and everyone out there suffering can heal.
Cort, thanks for all your help in keeping us up to date. So appreciated.
What can cause such an impact in such a short time? It makes think of pathogens and autoimmune processes.
My onset was also very specific and brief (I usually think of the transition in terms of a week). For what it’s worth, my neurologist recently told me the asymmetries in my neuropathies suggest the cause was an (unknown) autoimmune disorder.
Betty, the same thing happened to me. Within one week I became ill and was changed forever. Pam
As always Cort, your articles and research is fantastic. For a lay person, you get to the good bits without confusing the rest of us (as if we need any help there lol!).
Thank you so much for doing what you are doing for FM and CFS patients. We are always our own best advocate. Staying on top of what is happening in finding a cure or better treatments is important. It helps keep me sane.
Thanks Shannon – it gives me hope as well 🙂
Thank you for sharing Cort and all of you commenting. My pain patterns also changed quickly on a July 4th weekend away with my daughter one and 1/2 years ago. My life has changed and it’s very hard to believe it still!
I always stay up on latest stories, trials, studies. Always trying to get my doctor to understand better. Thank you all for sharing.
We’ll have a good place where people can highlight their stories probably in the next month
Cort I too wish to add my sincere thanks to all those already mentioned, I have been on FB much longer than I ought and could only “skim” through it as my brain couldn’t latch on properly! today! However I will read it again when refreshed (well! As refreshed as we with the illnesses can become!)
THIS IS A MUST for ALL GPs to receive and to hopefiully digest and all friends and families of those of us tired to death trying to explain our illnesses xo
Agreed, I need it a little more streamlined to read, my brainfog had me reading and re-reading. Also agree I’d like my GP to read this, it distresses me that family members can look up FM on WebMD and get a very old outdated look at it. It undermines everything I’m telling them and sets me back so far in understanding what I am experiencing. Thanks for the information.
I send these articles to my dr., we both find them so helpful. Thank you, Abot
This sounds very much like what is probably happening with Multiple Chemical Sensitivity as well. I wish researchers would study it as a distinct syndrome, since people can have one, or a combination of, MCS, ME/CFS, and FM, all at varying levels of severity. It is not only the extremely ill patients (as mentioned in the article) that can have extreme sensory sensitivity and are unable to tolerate stimuli.
I agree completely…
Cort, thank you for the clarity of this article. Again, you are describing my daughter (37) so well and this has been going on since she was a LITTLE GIRL. Came to full fruition (so to speak) as she approached puberty, but even as an 8-10 year old child, she was on sensory overload. She would tell me she could hear the electricity running in the house. Sound and light often drove her nuts. We walked around in the dark being very quiet when she was having these brain attacks. She still suffers with this problem among many, but the kicker is that seizures (which we now believe were occurring mildly in her teens) hit about six years ago and she has to take a lot of meds to keep them under control. We’ve all concluded that this may be tied in with the orthostatic hypotension problems – can’t get enough oxygen to the brain, and the 20 year struggle finally has resulted in this epileptic issue. But the pain/brain overload is all tied in. And that’s when the emotions become overwhelming. She has always said it was an adrenalin overload problem – couldn’t shut it off. Our special blessing is that she just got married to a
very special man who is willing to walk this journey with her, and having that emotional support
has been so helpful to her. Bless you, and again, thank you…
The sensory gating problems described here are also present in people with schizophrenia and related disorders.
My sister has schizo-affective disorder, and she is very sensitive to sensory stimuli. It is very common for direct relatives of people with these disorders to have similar issues with sensory gating. There seems to be a genetic link. I think in me it may have played a part in developing CFS, or this genetic link or what every it is became “activated” at some point.
There is a receptor in the brain that binds with nicotine, and this alleviates the symptoms of sensory overload. That is why many people with these or similar types of disorders self-medicate with nicotine (usually by smoking). My sister smokes two packs a day!
I don’t smoke, but I am experimenting with diet. It seems that eating cheese makes me more sensitive to auditory stimuli in particular. I also have tinnitus, and it seems that the worse the tinnitus, the more sensitive all my senses are. I also think that histamine, or other biogenic amines, and salicylates play a part here. I am both moderately histamine and salicylate intolerant at the moment. The lower I can get my histamine and salicylate levels, the less sensitive I become. Unfortunately, it doesn’t make for a very nutritious and satisfying diet. I’m in a bit of a conundrum at the moment, diet-wise.
Just to be clear, I have CFS, not Fybromyalgia. I don’t have high pain levels, but I am very sensitive to light, sound, smell.
Thanks for another informative article, Cort. While I’m reading this article I keep thinking about the severely ill ME/CFS patients shut up in dark rooms. Some wearing eye shades and ear plugs. It seems to me that FM is part of ME/CFS rather than a totally separate disease. While I primarily have ME/CFS I definitely have sensory overload issues and catastrophizing, anxiety and worry. While I seldom mention these thought I am very aware and shocked that these thought are running around my brain. In my healthier days, I back packed around the world and I thought I could adjust or cope with anything life threw me. Now my annual pilgrimage to the mall is fraught with anxiety and dread. This disease has been a very humbling experience for me.
I would like to ask: what comes first? A “disease” that renders the Fibromyalgic less able to cope – or is it chronic stress or trauma of some kind that causes the initial nervous system dysfunction, leading to the victim spiraling downwards?
I believe the chronic stress was what came first in my case. I did not need fibromyalgia for my nervous system to be overloaded – I just WAS overloaded!
Has there been much in the way of study of correlations between stressful occupations or particular types of trauma, and fibro onset? For example, are there disproportionate rates of fibro among air traffic controllers? Or among people with poverty related life stresses? Or are there disproportionately low rates of it among people who are a success in a chosen dream field of occupation?
Love to know the answer to this as well! Always wondered, couldn’t find the answer.
Constant stress beforehand along with Undiagnosed tick disease
Thank you so much Cort for your valuable research !!!
This is exactly what Martinez Lavin said in his books and articles: small fiber neuropathy and dysregulation of the autonomic system. Then this leads to catastrophizing, anxiety and worry. We feel we can’t control our body and them panic comes
Raquel (from Brazil)
Hi all just read all your posts. I am learning more about my brain then when I w a s a nurse lol, and yes I believe the constant stress in someone’s life comes first. Just a question I read some research online las year -can’t remember where, that got confirmed for me by someone in my local Me society that ME can now be separated from CFS by an MRI scan. The scan shows changes, I think at the base of the brain that are only seen in ME. Also the process of ME is worse than CFS.this is quite recent research so it might take a while for GPS to get on the case for definite diagnosis and will they do it due to costs.
Thanks for listening
June
Thanks for the great article! If I understand it correctly, a workable metaphor would be a self-perpetuating positive-feedback loop with a broken ‘surge-protector’. The insula is exciting the ANS, kicking it into sympathetic mode and amplifying the excitatory potential of stimuli as they enter the SSC. In FMS/CFS the SSC fails to impose a limiting threshold on this excitation. This unattenuated signal is then fed into the insula thereby keeping it over-stimulated. Repeat. Amplify. Repeat. Amplify.
In a non-biological system we could just cut the circuit at one point, but this would presumably be either impossible or lethal in an organism. Perhaps manually attenuating the signal at as many points as possible would be beneficial?
E.g.
meditation to strengthen the insula
+ parasympathomimetics (such as nicotine) to calm the ANS
+ adaptogens to balance the HPA axis
+ limiting external stressors/stimuli as much as possible
+ NMDAr antagonists to weaken the connection of the SSC to the insula
Seguing from one topic of interconnectivity to another:
Are there any meta-analyses of your articles, Cort? I can’t help but wonder how this^ ties together with microglia and leptin etc. Are microglia attacking the SSC? My mind is whirring with what-ifs.
Thanks again for everything you do!
Really great the way you put that together Sean 🙂
I love the analogy of a surge-protector.
No meta-analyses but if you’re interested in doing one – or blogging on another subject – that would be great. 🙂
Would anyone mind sharing what type of doctor you see for your illnesses? I need a doctor terribly, but most of the good general practitioners here won’t see patients that are taking pain medicines. I’ve told them I don’t need to want pain care and that I see a pain management specialist but that still doesn’t help. I’ve also tried asking my pharmacist without success in finding a good doctor.
I would greatly appreciate any feedback.
Thank you!
I’ve thought for a longggg time that the autonomous nervous system was affected. It is good to see my thoughts confirmed. This is excellent Cort as it really describes what is happening. Shows that it’s not normal pain and I can just print it out and let who ever read it. Makes such a difference. THANK YOU.
Jazel
very good article! I personally “got” fibromyalgia after having meningitis… I was a healthy strong woman, and after getting ill my life changed from them on 🙁 not for the good.. I would love to be able to unplug my brain and senses for some relief!!
I have recently read that pain narcotics permanently change the brain and not in a good way. If the cause of Fibromyalgia is due to a brain dis-connect what does adding narcotics to the mix do? Also, if nicotine helps what does marijuana do?
I think it depends on who you are. For some FM patients narcotics help – for others they can, over time, increase pain sensitivity. Medical marijuana is very helpful for some people with FM.
My wife has CFS and fm for eight years her stomach has been getting worse and worse with gut renching pain millions of tests nothing comes of it she is told she has a fibro gut please explain l feel helpless that l can’t help with the pain
I imagine that she has irritable bowel syndrome and perhaps small intestinal bacterial overgrowth (SIBO). You might look up both of those on website and check out the FODMAPS blog we did recently. Good luck!
the article and all the replies are very informative. I have FM with CFS, IBS, Neurovegitative Dystonia & profound Alodynia which we think was triggered by a bad dose of Glandular Fever. I see a Rheumatologist who specialises in FM. My biggest upset has been his diagnosis that my sons, who both have the condition, inherited it from me. We all have antidepressants and Fentonyl patches for pain relief. It has also been suggested I may have ADHD as my brain doesn’t ever wasn’t to slow down to let me rest.
This is great work. I am currently applying to a phd program with the intent of continuing to study treatment interventions that might correct the insula and reduce pain symptoms. I have FMS and PTSD, which both began at the same time. this summation both matches my personal experience and nicely captures a large amount if existing research. Well done!
Cool. I hope we hear more from you and what you learn :). (Blogs are welcome :))
This is a wonderful and very informative piece! I do care giving for clients who are home bound, whether they are elderly, young, or mentally disabled. And as I grew up in a medical family, I am more perceptive of ailments and whatnot. I try to explain to some of my co-workers, but because I do NOT have an actual degree in nursing or whatever, they blow me off as incompetent. No, I just do my research on clients’ whom I take care of, and I call my family if I have any questions. I’ll be printing your article out and putting it in the house notes for ALL to see. Thanks for posting this and helping to explain what they go through. 🙂
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