Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

What is Fibromyalgia - Part II

Nov 20, 2015 3:51 PM

Dear Community,

In the introduction article about Fibromyalgia (FMS) last week I covered symptoms, causes, how it’s diagnosed and the difficulties about it. In this article I want to outline some topics you were interested in. I know there is lots of information about FMS out there (e.g. other Fibromyalgia apps) so there is no point in trying to cover it all and I have limited space here. One problem with researching FMS is that you run into the problem of “insufficient” or “conflicting” research data. I know it’s frustrating, but since we speak about a syndrome with different causes and not an entity of disease, the research data will always be conflicting. This is the nature of a syndrome. We have to live with what is known and decide individually if it makes sense to us.

Causes - Central Sensitivity (CS)

The problem with FMS is that it cannot be explained in the classic medical model based on specific tissue pathology with distinctive symptoms. There is no peripheral damage in the tissue, no autoimmunity and no inflammation. It’s regarded a disorder of pain processing in the spinal cord and brain. This means there is an increased responsiveness (“sensitizantion” or “centralized pain”) to sensory information like pain, touch, hearing or light. One reason is that the body’s own pain inhibiting system (e.g.opioids, endocannabinoids) is weakened, mostly because of stress. This hyperresponsiveness causes widespread pain across body parts and is independent of nerve roots. For that reason anti-inflammatory agents (NSAIDs), cortison injections, physiotherapy, massage and of course operations don’t work as treatments. So your rheumatologist or neurologist isn’t going to get you very far.
Accordingly, brain scans (functional MRI) show a higher pattern of activation in the pain processing areas (“pain matrix”) and decreased activity of the descending pain-modulating networks in FMS compared to healthy controls. So there is objective proof of pain in the brain. Now the concept of CS is very complex and serves as a paradigm for explaining the overlap of syndromes we couldn’t explain before. For patients I find it of limited use so I don’t go into it further. You can find much more in depth information about this process here: http://www.fmcpaware.org/fibromyalgia/science-of-fm.html

Pain Modulation

Pain is a constant balance of ascending perception, descending inhibition and appreciation. It’s a complex interaction of different areas is the brain of which emotions and awareness play a big role. You might notice this when pain is increased during times of stress, anxiety or depression. On the other side, the feeling of success or happiness can fade out pain. For that reason chronic pain is often treated with antidepressants and psychotherapy and psychologists speak of “unlearning pain” (this video explains more about it https://www.youtube.com/watch?v=5KrUL8tOaQs). Because stress and pain are so closely interlinked, everything that affects stress in a positive way is suggested as a treatment for chronic pain as well, e.g. relaxation, exercise, good sleep and psychotherapy. If the underlying cause for stress is emotional trauma, this should be addressed in treatment as well.
The assessment at our clinic usually includes the current social and psychological life situation as well the biography. This often reveals extremely high stress loads in the past. It’s an obvious and distinct pattern but it is difficult to identify in research studies.
But not all people with emotional trauma develop chronic pain and not all people with FMS have a history of trauma. There are other risk factors which leads me to the next topic:

Risk factors for FMS

- Genetics: Current knowledge indicates a genetic underpinning for FMS because of familial aggregation. Since pain sensitivity depends on many different genes and because FMS is a syndrome, there’s a wide variety of genes that play a role. Interestingly studies have found a lower enzymatic activity for the breakdown of catecholamines (e.g. adrenaline) in some FMS patients, based on the gene coding for the enzyme COMT. This leads to higher levels of stress hormones in the blood and fits into the framework of a stress-related disorder. Although significant progress has been made in studying the genetic basis of fibromyalgia, no clinical prediction can be made with current evidence .

- Hypermobility Syndrome: Joint hypermobility is a common and frequently overlooked genetic disorder and is a multisystem disorder, strongly associated with chronic widespread pain .

- Sleep: Sleeping difficulties generally lead to increased pain sensitivity. Anecdotal reports of FMS patients often reveal sleep disturbances long before the onset of pain. A long term observational study has even found anassociation between sleep problems, their severity and the risk of FMS. Also here, sleeping problems generally indicate a stress related problem.

- Stress and Early Life Adversities: High levels of psychological distress increase the likelihood of developing chronic widespread pain. The earlier this happens in life, the bigger the impact is. But also non-remembered painful events, such as stressors during early infancy (hospitalization, maternal deprivation, physical or substance abuse in the neonatal period) and even premature birth can cause long-lasting changes in pain processing systems and increases pain sensitivity later on. So these are events you might not remember but had a lasting impact on pain sensitivity.

So much for this second part. I hope this is useful and I answered some of your questions. Otherwise just leave a comment on what you want to know more about or what your experiences you have made. We can also go into treatment options, personally I favor mind body techniques.

Nov 23, 2015 11:37 AM

Thank you Dr. Fouradoulas. I can account for early life stressors, as well as adult life stressors, sleep issues for over a decade, and multiple family members with FMS from both sides of my family. The only thing not in my family is the hypermobility. I'm going to check out the links you posted. Much appreciated! 🙏🌼

Nov 23, 2015 1:22 PM

Thank you, part two was much more informative and made me think back. I can see the path...early life stress that really have went on my entire life in one form or another. I have hypermobility in joints while the doctor does not mention it my physical therapist does every meeting. My dad, I believe had fibromyalgia which started after being hit by a bean truck, thrown in the air and landed flat on asphalt. I have had sleep issues as far back as i can remember and about 11 years ago right before my fibromyalgia diagnosis it became severely worse. I still don't sleep well at night then have no control falling asleep during the day. I am unfortunate enough to be the type that can't be touched. I so miss really big long tight hugs.


1. I am wondering if any higher than normal good mood can make the pain worse? More than a few times I have been excited and happy to do something and the pain seems worse.

2. You mentioned a neurologist or rheumatologist won't get us very far. What other options do we have.

Nov 24, 2015 2:21 PM

shemmagren, thank you for your comment
1. Only you can tell if distraction or positive emotions work for you. From all we know through experience and research is that pain intensity doesn't always stay the same. Focused attention can make a big difference and this can be learned. That's why we emphasize relaxation techniques in chronic pain in pain management programs. A similar approach is hypnosis, where in some people pain can be turned on or off, simply through suggestions.

2. Good question!
- First, take charge of your own care.
- It's a very individual process because chronic pain can be very different from person to person, so there's on one-size-fits-all solution. If you say that stress has always been a part of life, have you adressed it? Experience shows that when there is emotional trauma and its addressed through therapy, the pain relieves. And if you can't find out where the pain comes from, where does it lead you to? What I often see is that it leads to more self awareness, more taking care of self, smaller steps and goals, accepting help etc. So if elimination doesn't work, integration is the only option.
- Other options? Imagine you're in a market place and there are booths that offer products. You can only buy the things they have and they only know about the stuff they sell. If you're looking for something else, they might suggest something. There may be other people looking for the same things as you and might better guide you. The point is, don't think of the doctor as someone who can sell you everything. There are limits and conventional medicine is focused on acute care, not chronic. This is where the Pain Companion comes in, get advice here. Personally, after going through the pain management program, I suggest mind body therapies like meditation, hypnosis, relaxation, working on mental attitude etc.

But what do others say in here?

Nov 24, 2015 10:15 PM

I am fortunate to have a great primary doctor. Due to my health condition and not being able to work I have zero income and hoping to find ideas. I have been through the round of specialists and had enough of hearing..."for a medication to be deemed effective it only has to help 33%" or "there is nothing more we can do for you learn to live with it"...you get the idea. I wish they had to live with pain like this.

Ready to start relieving your pain?

Join Community