“How would you deal with invisible pain?”

I have a question for all the medical students out there. Have you heard of a condition termed ‘FIBROMYALGIA’? I can bet that the majority of you aren’t aware of what this condition is. Many of you might have come across this term but never tried to read its details because of course, it’s not going to be asked in your exams, right?

So, you must be wondering what is fibromyalgia and why am I so concerned about the medicos being aware of it. Let’s begin with understanding its definition first. Fibromyalgia is a syndrome that lacks a clearly defined underlying organic disease. Central sensitisation is the primary driver of this condition, resulting in central sensitivity syndrome, involving widespread chronic pain and tender points, joint stiffness along with cognitive dysfunction, sleep difficulties, anxiety, exhaustion, and depressive episodes. The pain in fibromyalgia can often be really debilitating that the individual may fail to carry out normal day-to-day activities. [1]

The pathophysiology of this condition is still not fully understood. It primarily involves dysfunctions in monoaminergic neurotransmission, which results in increased levels of excitatory neurotransmitters like glutamate and substance P and decreased levels of serotonin and norepinephrine at the level of descending anti-nociceptive pathways in the spinal cord. Dopamine dysregulation and altered endogenous brain opioid activity are other reported aberrations. [2]

On the other hand, research has shown that medical students, as well as medical practitioners, lack the required amount of knowledge and appropriate attitudes to treat patients with fibromyalgia, which clearly indicates that the contemporary medical education system isn’t addressing this issue. [3] [4] [5]

A qualitative study by V. Silverwood et. al., conducted in 2017, showed that medical students had certain beliefs such as “Fibromyalgia is just in a person’s head”, “If fibromyalgia was a medical issue, their curriculum would have covered it”.[6] One of the medical students commented that they learnt about it in their fourth year but it wasn’t covered in detail. Some responses also showed that their professors were the cause of these beliefs being rooted in their minds. Lack of teaching regarding the condition made some students feel that it wasn’t that prominent or significant enough, like conditions such as chronic heart disease or renal failure. However, such beliefs can often make them invalidate the patient’s pain, which may also prevent the patient from seeking help. Invalidation of pain has also been found to worsen the pain and adversely impact the treatment outcomes. [5]

Perhaps, some of you might be still wondering, what makes me so concerned about this condition? To be honest, I am someone living with this condition. I feel like sharing it here with all the medicos out there so that you can understand it better and a part of me wishes that no one else should get to experience what I did. I was diagnosed with fibromyalgia when I was a 2nd-year MBBS student. I had been experiencing widespread chronic fatigue for like a year or two before that but I kept on neglecting that because doctors never found anything in any of the test reports. So, I kept on pushing myself until I reached a point when I couldn’t bear it anymore and there was a period when I couldn’t even walk without support. Although my test results were still insignificant and then a neurologist finally gave me a diagnosis, “FIBROMYALGIA” and adding on to that, he said, “You just need to manage your stress. This condition is not even real, it’s all in your head.” I was prescribed some antidepressants but they did more harm than good and then I consulted other neurologists, rheumatologists, and psychiatrists and the stories were always the same. I felt worse and really embarrassed about having this condition. I couldn’t make it to my college lectures because it was extremely painful to sit or stand for long. But when I went to my professors to request an exemption, here’s what they said, “If college is making you so stressed out that you are experiencing these symptoms, maybe you shouldn’t be here.” I tried my best how desperately I wanted to stay at college, how desperately I wanted to learn medicine, how desperately I desired to be a good practitioner but it was impossible. From thereon, I started pushing myself really hard, harder than I had done ever before. There were times when I felt dizzy during my postings and there were times when I actually fainted but I could never share the reason behind those episodes because I was too embarrassed to let my colleagues know that I was experiencing an invisible condition, perhaps a condition that was just in my head.

My family could never validate my pain because they believed what doctors said. I hated myself for having fibromyalgia so much that I was desperate to die. The medicines used to work for a while and then they used to worsen the IBS (irritable bowel syndrome) symptoms which often accompany fibromyalgia. But one day, I realized that if I ever came across someone like me, I would certainly not hate that person, I would know the kind of pain that person would be experiencing, and I would know that the pain is real and not in the person’s head. That day, I asked myself, why couldn’t I see myself the way I would see someone else? Because even I had been invalidating my pain all that time and if I am doing it to myself, how can I possibly help someone else with this condition? I started gradually learning to manage my symptoms. Although I still feel really stuck at times when I experience flare-ups, I know that I can not push myself to a breaking point. My pain and fatigue are real and I need to rest when I feel exhausted, instead of telling myself that my condition is in my head and I need to keep working as hard as possible to be worthy of being a good practitioner, to compete against the rest of my colleagues in some sort of “an invisible race”. Western medicine didn’t work on my body, so I started working with a psychotherapist, physiotherapist, and nutritionist. To conclude, I would like you all to know that as medical practitioners, it’s our responsibility to empathize with a patient instead of invalidating what they are going through. At the same time, since this condition is still not fully understood, we must be well aware of all sorts of treatment modalities available and let the patients know about their options to help them find what works out best for them.

References:

1. Maffei ME. Fibromyalgia: Recent Advances in Diagnosis, Classification, Pharmacotherapy and Alternative Remedies. PubMed Central (PMC) 2020. https://doi.org/10.3390/ijms21217877.
2. Siracusa R, Paola RD, Cuzzocrea S, Impellizzeri D. Fibromyalgia: Pathogenesis, Mechanisms, Diagnosis and Treatment Options Update. PubMed Central (PMC) 2021. https://doi.org/10.3390/ijms22083891.

3. Mu R, Li C, Zhu JX, Zhang XY, Duan TJ, Feng M, et al. National survey of knowledge, attitude and practice of fibromyalgia among rheumatologists in China. International Journal of Rheumatic Diseases. 2013 Apr 4;16(3):258–63.

4. Amirah Alatawi, Moria HA, Abdulrahman Arshed Alharfy, Mohammed Jameel Sehly, Alotaibi A, Yousef Salem Alshammari, et al. Knowledge, Attitude, and Practice Regarding Fibromyalgia Among Primary Care Physicians in Tabuk, Saudi Arabia. Cureus [Internet]. 2023 Feb 17 [cited 2023 Apr 29]; Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10024889/

5. Silverwood V, Chew-Graham CA, Raybould I, Thomas B, Peters S. “If it’s a medical issue I would have covered it by now”: learning about fibromyalgia through the hidden curriculum: a qualitative study. BMC Medical Education. 2017 Sep 12;17(1).

6. Wernicke S, de Witt Huberts J, Wippert PM. The pain of being misunderstood: Invalidation of pain complaints in chronic low back pain patients. Journal of Health Psychology. 2016 Jul 10;22(2):135–47.