Fibromyalgia is a real condition, not a waste-basket diagnosis or imagined illness, but unfortunately not everyone in the medical community or wider community recognises this. There is significant scientific evidence to show that fibromyalgia is real.
Fibromyalgia is a neurological illness that affects every system of the body leading to a large range of fibromyalgia symptoms and dysfunctions including widespread pain, primarily in the muscles, fatigue, sleep disturbances and cognitive disturbance.
Whilst there are measurable dysfunctions that can be observed with diagnostic testing in fibromyalgia, there is no single diagnostic test for fibromyalgia which is why some people historically have not recognised fibromyalgia as being real.
Why The Scepticism About Fibromyalgia Being A Real Disease?
It’s important to realise that many doctors are still unfamiliar with fibromyalgia. An observational study published in 2018 showed that even physicians who diagnose chronic pain conditions do not have adequate and homogenous knowledge of the fibromyalgia diagnostic criteria.1
At it’s worst, some physicians simply say that fibromyalgia isn’t real and the whole existence of the diagnosis should cease; “The sooner we abandon the diagnosis, fibromyalgia, disband the patient advocacy organizations, and stop the irresponsible publications, the better we serve the public.”2
But whilst that editorial dates back to 2003, the whole discussion of whether fibromyalgia is in fact real still continues with a journal article published in 2015 titled; Not the Last Word: Fibromyalgia is Real. 3
So what is at the heart of the scepticism about fibromyalgia being real?
It appears that the main issue here is that the “manifestations” of fibromyalgia are described as “mostly self-reported and unverifiable”.1 In other words, they are invisible symptoms not easily measured by the physician with scientific diagnostic testing. Core symptoms of fibromyalgia such as fatigue and pain are symptoms that obviously fall into this realm, however, with advances in medical imaging, the invisible is becoming visible.
Medical Evidence That Fibromyalgia Is Real
Whilst standard blood tests may not show any obvious dysfunctions, physicians with clinical experience in fibromyalgia will often find abnormalities in thyroid function, adrenal output and other hormonal balances. However, because results are not the same for all patients, this often leads to the idea that fibromyalgia is not real and that it is simply a collection of separate diseases or dysfunctions, such as adrenal insufficiency, hypothyroidism or other conditions.
But here is a collection of research findings showing that there are very real differences in people experiencing Fibromyalgia compared to controls (ie. healthy individuals)
1.) Systemic Inflammation & Neuroinflammation
Fibromyalgia is not categorised as an inflammatory disorder.4 But research has shown that there is in fact evidence of some systemic inflammation and neuroinflammation.5 Specifically they found proteins related to elevated inflammation in both the cerebral spinal fluid and blood plasma of patients with fibromyalgia.
Other research has also confirmed that pro-inflammatory levels of cytokines are increased and anti-inflammatory cytokines are descreased in fibromyalgia 13.
2.) Brain Differences In People Experiencing Fibromyalgia
But it isn’t just about the physical make-up of the brain, but also about how it functions. Research into the somatosensory cortex of the brain in people with fibromyalgia showed distinct differences in how the brain responded to pain stimulation by using functional MRI technology. 8 9 In fact, differences in fibromyalgia brains have been seen for some time with some notable papers published back in 2002 and 2004. 10 11
3.) Other Medical Evidence That Fibromyalgia Is Real
If you look at the medical research to search for evidence that fibromyalgia is real, that there are measurable physical dysfunctions, the amount of articles published will quickly make the whole notion of the possibility that fibromyalgia is not real quite surprising.
Research in fact has also shown that sleep is disturbed in Fibromyalgia 12.
Fibromyalgia Is Real But Not Homogenous
A lack of understanding into the pathogenesis of Fibromyalgia and the physiopathology of the symptoms contributes to the perpetuation of this myth around Fibromyalgia not being real.
One study looked at over 3000 patients with fibromyalgia and noted significant variation and classified patients into five subgroups and suggested that in one subgroup, the severe comorbidities dominate the clinical picture.16
We can see how this can lead to the idea that Fibromyalgia isn’t real and is simply a collection of comorbidities.
However, a physician experienced in fibromyalgia will soon recognise a pattern of common comorbidities which in fact are directly resulting from fibromyalgia. This is why you will see how people over time develop such comorbidities even if they are not there at the onset of illness. Many of these comorbidities are in fact driven by the underlying pathogenesis of fibromyalgia, the dysfunction of the nervous system.
The impact of asking "is fibromyalgia real?"
Patients with fibromyalgia have reported stigma from health care professionals and had to deal with discouragement, rejection and suspicion. Not surprisingly, the impact on their quality of life is significantly negative 17.
After all, anybody dealing with severe chronic illness is going to feel an impact on their quality of life, but having to deal with the insult of being labelled a malingerer, hypochondriac or attention seeker is obviously going to adds to their distress. Not only can this lead to social isolation, but also to patients not seeking appropriate medical attention for fear of having their symptoms dismissed as not real.
Whilst this battle to legitimise fibromyalgia has been going on for a long time, it appears that more and more people in the medical and wider communities are recognising this illness as real. Please share the facts in this article to help dispel the myth that fibromyalgia isn’t real!
1. Kumbhare D, Ahmed S, Sander T, Grosman-Rimon L, Srbely J. A Survey of Physicians' Knowledge and Adherence to the Diagnostic Criteria for Fibromyalgia [published correction appears in Pain Med. 2019 Aug 1;20(8):1643]. Pain Med. 2018;19(6):1254‐1264. doi:10.1093/pm/pnx271 retrieved from https://pubmed.ncbi.nlm.nih.gov/29177458/ BACK ⤣
2. Ehrlich GE. Pain is real; fibromyalgia isn’t [editorial]. J Rheumatol 2003;30:1666-7. retrieved from http://www.jrheum.org/content/jrheum/30/8/1666.full.pdf BACK ⤣
3. Bernstein J. Not the Last Word: Fibromyalgia is Real. Clin Orthop Relat Res. 2016;474(2):304‐309. doi:10.1007/s11999-015-4670-6 retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4709307/ BACK ⤣
4. updated by Isabelle Amigues, M.D., M.S., RhMSUS March 2019, Fibromyalgia American College of Rheumatology viewed 17th June 2020, https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia BACK ⤣
5. Bäckryd E, Tanum L, Lind AL, Larsson A, Gordh T. Evidence of both systemic inflammation and neuroinflammation in fibromyalgia patients, as assessed by a multiplex protein panel applied to the cerebrospinal fluid and to plasma. J Pain Res. 2017;10:515‐525. Published 2017 Mar 3. doi:10.2147/JPR.S128508 retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344444/# BACK ⤣
6. Daniel S. Albrecht, Anton Forsberg, Angelica Sandström, Courtney Bergan, Diana Kadetoff, Ekaterina Protsenko, Jon Lampa, Yvonne C. Lee, Caroline Olgart Höglund, Ciprian Catana, Simon Cervenka, Oluwaseun Akeju, Mats Lekander, George Cohen, Christer Halldin, Norman Taylor, Minhae Kim, Jacob M. Hooker, Robert R. Edwards, Vitaly Napadow, Eva Kosek, Marco L. Loggia. Brain glial activation in fibromyalgia – A multi-site positron emission tomography investigation. Brain, Behavior, and Immunity, 2018; DOI: 10.1016/j.bbi.2018.09.018 retrieved from https://www.sciencedirect.com/science/article/pii/S0889159118302423?via%3Dihub BACK ⤣
7. McCrae CS, O'Shea AM, Boissoneault J, et al. Fibromyalgia patients have reduced hippocampal volume compared with healthy controls. J Pain Res. 2015;8:47‐52. Published 2015 Jan 30. doi:10.2147/JPR.S71959 retrieved from https://pubmed.ncbi.nlm.nih.gov/25674013 BACK ⤣
8. Kim J, Loggia ML, Cahalan CM, et al. The somatosensory link in fibromyalgia: functional connectivity of the primary somatosensory cortex is altered by sustained pain and is associated with clinical/autonomic dysfunction. Arthritis Rheumatol. 2015;67(5):1395‐1405. doi:10.1002/art.39043 retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4414820/ BACK ⤣
9 Ichesco, E., Puiu, T., Hampson, J., Kairys, A., Clauw, D., Harte, S., Peltier, S., Harris, R. and Schmidt‐Wilcke, T. (2016), Altered fMRI resting‐state connectivity in individuals with fibromyalgia on acute pain stimulation. Eur J Pain, 20: 1079-1089. doi:10.1002/ejp.832 retrieved from https://onlinelibrary.wiley.com/doi/full/10.1002/ejp.832 BACK ⤣
10. Gracely RH, Petzke F, Wolf JM, Clauw DJ. Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia. Arthritis Rheum. 2002;46(5):1333-1343. Retrieved from https://pubmed.ncbi.nlm.nih.gov/12115241/ BACK ⤣
11. Cook DB, Lange G, Ciccone DS, Liu WC, Steffener J, Natelson BH. Functional imaging of pain in patients with primary fibromyalgia. J Rheumatol. 2004;31(2):364-378. Retrieved from https://pubmed.ncbi.nlm.nih.gov/14760810/ BACK ⤣
12. Roth T, Bhadra-Brown P, Pitman VW, Roehrs TA, Resnick EM. Characteristics of Disturbed Sleep in Patients With Fibromyalgia Compared With Insomnia or With Pain-Free Volunteers. Clin J Pain. 2016;32(4):302-307. doi:10.1097/AJP.0000000000000261 retrieved from https://pubmed.ncbi.nlm.nih.gov/26035524/ BACK ⤣
13. Ignasi Rodriguez-Pintó, Nancy Agmon-Levin, Amital Howard, Yehuda Shoenfeld, Fibromyalgia and cytokines,Immunology Letters,Volume 161, Issue 2,2014,Pages 200-203,ISSN 0165-2478, https://doi.org/10.1016/j.imlet.2014.01.009. retrieved from https://www.sciencedirect.com/science/article/pii/S0165247814000133 BACK ⤣
14 Cole JA, Rothman KJ, Cabral HJ, Zhang Y, Farraye FA. Migraine, fibromyalgia, and depression among people with IBS: a prevalence study. BMC Gastroenterol. 2006;6:26. Published 2006 Sep 28. doi:10.1186/1471-230X-6-26 retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1592499/ BACK ⤣
15 Vij, B., Whipple, M.O., Tepper, S.J., Mohabbat, A.B., Stillman, M. and Vincent, A. (2015), Frequency of Migraine Headaches in Patients With Fibromyalgia. Headache: The Journal of Head and Face Pain, 55: 860-865. https://doi.org/10.1111/head.12590 retrieved from https://headachejournal.onlinelibrary.wiley.com/doi/abs/10.1111/head.12590 BACK ⤣
16 Stefanie E. Rehm, Jana Koroschetz, Ulrich Gockel, Mathias Brosz, Rainer Freynhagen, Thomas R. Tölle, Ralf Baron, A cross-sectional survey of 3035 patients with fibromyalgia: subgroups of patients with typical comorbidities and sensory symptom profiles, Rheumatology, Volume 49, Issue 6, June 2010, Pages 1146–1152, https://doi.org/10.1093/rheumatology/keq066 retrieved from https://academic.oup.com/rheumatology/article/49/6/1146/1790415 BACK ⤣
17. Lobo CP, Pfalzgraf AR, Giannetti V, Kanyongo G. Impact of invalidation and trust in physicians on health outcomes in fibromyalgia patients. Prim Care Companion CNS Disord. 2014;16(5):10.4088/PCC.14m01664. Published 2014 Oct 9. doi:10.4088/PCC.14m01664 retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4321014/ BACK ⤣