Fibromyalgia: The Pain is Real

Patients Want the Doctors to Believe Them

A was called to the ICU to evaluate a 38 year old female patient admitted to the hospital for chest pain. As the on-call doctor, I rushed to the ICU nursing desk and started to flip the chart as we always do before actually seeing the patient. She had a thick chart. The majority of the chart was filled with old medical records that the ER doctor had ordered from her old doctor. There, I saw the diagnosis written in bold letters: Fibromyalgia. Apparently she had been suffering from fibromyalgia for years. She had been seen by multiple doctors over the years. She had her first diagnosis of fibromyalgia given at the Mayo clinic when she was 25. She was referred to Mayo after her family doctors were not able to tell her what was wrong with her.

After reviewing her chart, I went into the room to see her. As soon as I entered the room I could sense an air of distrust. She looked as if she knew no one would believe her no matter how hard she would explain her suffering to the world. I mentally prepared myself to be as empathetic as possible but I could clearly see the frustration in the eyes of the nurse who had been talking to the patient for a while. I simply introduced myself and asked her how she was feeling. She burst into tears and stated complaining that she had been hurting all her life and no one seemed to believe her. I told her, "Yes, I can understand how frustrating the pain of fibromyalgia can be. I had a few patients suffering from this condition." She was clearly surprised to hear those words from a doctor. She immediately started telling me about several doctors that she had seen in the past and how they seemed to dismiss her symptoms and labeled her as having a drug seeking behavior.

Her stories and complains were very similar to other patients with fibromyalgia that I had treated in the past. Why are patients suffering from fibromyalgia so miserable?

Well, it has to do with how modern medical practice works. Doctors have always been trained to look for objective evidence when making a diagnosis. The subjective information is important and always helps to narrow down the diagnosis but doctors have a tendency to rely upon something they can point to when explaining their diagnosis to their college. They always want to validate their subjective judgment with a blood test or a CAT scan or an EKG or a MRI. But fibromyalgia patients do not have any abnormal findings in any of those tests.

On the other hand, the patient probably did not understand that the only reason she was given the diagnosis of fibromyalgia at the Mayo clinic was that they could not find any other possible explanation of her symptoms. She only recalls getting several different high tech studies and being seen by several specialists. She underwent an electromyogram, a nerve conduction study, several MRI s, muscle biopsy and several other highly specialized procedures. She was told in the end that she had fibromyalgia. What she did not understand was that the main reason she was given the diagnosis was that all her tests had been normal.

Although, the diagnostic criteria and medical literature on fibromyalgia has been around for many decades, the medical community is still somewhat skeptical to its existence and seems to think that the origin of pain is mostly psychological as they cannot see any objective evidence that anything is actually wrong with the body. That is why they feel very uncomfortable dealing with patients claiming to have a diagnosis of fibromyalgia. They always have second thoughts when prescribing pain medications to them. They are worried that it might promote drug seeking behavior and might induce drug abuse. One major medical article describing fibromyalgia in the Journal of American Medical Association (JAMA) described fibromyalgia as an emerging but controversial condition. A decade later the same author wrote an extensive article with latest research about fibromyalgia in the Archives of Internal Medicine.

In my opinion, we cannot dismiss the pain of fibromyalgia as not being real just because we do not have the ability to demonstrate its origin. If we apply the same logic, we should not be treating patients with depression just because we cannot diagnose depression with blood tests or x-rays. The origin of the pain in fibromyalgia may be at the muscles that are painful or it could be the nerves supplying the muscles or it could even be the part of the brain that receives signal from those nerves. Yes, with the technology we have today, we cannot detect any physical or chemical change in these components but it does not mean that they do not exist. They exist because the patients can feel them. If the patients with fibromyalgia were faking symptoms to get pain medicines, they would have never faked fibromyalgia. Patients who fake symptoms to get drug usually fake believable and easy symptoms. It is easy to fake and get pain medications for a bad back pain or a severe shoulder pain. It is not easy to fake fibromyalgia. The pain in fibromyalgia is very real to the patients who have them and yes they need to be treated. It is true that some patients with fibromyalgia do have some anxiety and depression but those are just illnesses associated with fibromyalgia. Instead of discarding the pain of fibromyalgia as just a "psychiatric problem", we should be treating their co-existing anxiety and depression and at the same taking care of the pain that is the result of their fibromyalgia.

My patient was very happy that I believed her and listened to her. Her mood and affect changed significantly and her pain improved after I gave her some strong pain pills. She did not ask for more pills after her pain was comfortable enough. She understood that she will probably have some residual pain even with the pills but she could live with that.

If you or any of your loved ones have a diagnosis of fibromyalgia, it is important for you know how the general medical community feels about fibromyalgia as no doctor will frankly tell you how they feel about it. You cannot change their opinion but can do a few things to get somewhat better treatment. Instead of saying, "I am miserable, I hurt everywhere and nothing works for my pain," just describe where exactly you have the pain and what pain medications you have tried in the past and which ones work better than the others. Nothing reinforces the negative feeling about fibromyalgia than a patient saying, "hurts everywhere and nothing works." There were the exact words that made the nurse so frustrated before I went to the patient.

Published by Nabin Sapkota, MD

A Board Certified Physician specializing in Internal Medicine currently practicing as a Hospitalist, Dr. Sapkota writes regular health column in "The Columbus Telegram". He has participated and presented cas...  View profile