Fibromyalgia: My Experience
What is Fibromyalgia?
Fibromyalgia is a term taken from Greek and Latin words,
Fibra (Latin) meaning fibrous tissue with painful ligaments and tendons,
Myos (Greek) meaning muscles,
Algos (Greek) meaning pain.
Also known as FMS or FM it is an invisible, chronic condition that results in wide spread pain and stiffness all over the body. Pain is often felt in the muscles, ligaments, tendons and joints in all four quadrants of the body. Pain can be accompanied by sleep problems and severe fatigue that can disrupt day to day life. Painful muscle spasms and leg cramps can make walking difficult for some. It is a condition that is still misunderstood even though it is the second most common rheumatic disorder with Osteoarthritis being the first..
Despite a growing amount of research with overwhelming data that proves FM is real there are still some doctors that do not believe that it is a true illness so many sufferers are told it is all in there head.
Some may have FM symptoms so severe and debilitating that they are virtually incapacitated for long periods of time and are often unable to work. Pain is felt most days but 'Fibro flares' take the pain to another level and the pain becomes excruciating.
Fibro Flares are when pain throughout the body intensifies and symptoms are exasperated. A flare can be triggered by a change in weather, any kind of stress, over exertion, insomnia or an infection like a cold. A flare can last days, weeks, months and in some cases years. At times the pain can be incapacitating and leave you feeling totally drained of energy and unable to function properly.
Memory problems are part of the syndrome and many who live with FMS find that they often have difficulties thinking. This thinking and remembering problem is called 'Fibro fog'.
Many sufferers of FM might also experience anxiety and depression and chest pains called Costochondritis. This can be an added worry as many feel like they are having a heart attack.
The symptoms of FM can vary quite a lot from person to person, and may be severe one day but mild the next. Fibromyalgia pain can also mimic other conditions such as, Rheumatoid arthritis, Polymyalgia Rheumatica (PMR) Lupus erythematosus, Osteoarthritis, Hypothyroidism, Chronic Fatigue Syndrome, (CFS) Sjogren's Syndrome (SS) and Carpel Tunnel Syndrome, so it is important to get the right diagnosis.
Previously, Fibromyalgia diagnosis depended on 18 tender points around the body which are trigger points. Tender point’s locations can be found in hips, back, neck and shoulders and can be painful when pressure is applied. Up to recently FM diagnosis was based on at least 11 out of 18 of these points being extra tender. This way of testing did not take into consideration other symptoms such as fatigue, headaches, depression and many other symptoms.
Since 2010, guidelines have suggested that health care professionals do not put full reliance on tender points in order to make a diagnosis. Now they should take into consideration features such as widespread pain that has lasted three months or more, sleep problems and/or waking up feeling unrefreshed and often exhausted, cognitive problems such as memory problems and difficulties with the thought process.
Causes Of Fibromyalgia
Why some people develop FM is not yet clear and the exact cause is unknown, it is thought to be related to changes of how our nervous system processes pain. FM can develop gradually over time and it's likely that a number of factors are involved which can include,
Genes. Fibromyalgia is said to run in families.Often our parents can pass on genes that can cause us to feel more sensitive to pain.
Physical and/or emotional abuse in childhood. Childhood abuse is thought to be a trigger as the child's brain struggles to deal with physical and emotional pain.
Gender. More women than men are diagnosed with Fibromyalgia. The reason for this is, according to some doctors, could be related to how men and women react to pain or how society dictates how men and women should respond to pain..
Post Traumatic Stress Disorder (PTSD) When an individual experiences a traumatic event such as a car accident, an assault or abuse, a rape or any other terrible event, FM can be triggered.
It has been found that those with autoimmune disorders such as Lupus, multiple sclerosis (MS) and Rheumatiod Arthritis can be more susceptible to developing FM
Other possible triggers can include, arthritis, surgery, illness and emotional distress
Research now show us that the condition is associated with a central nervous system disorder, which is responsible for the feeling of what can be described as amplified pain that shoots through the body in those who suffer from it. Daniel Clauw, M.D., professor of anesthesiology, University of Michigan,
Brain anatomy studies actually show structural differences between the brains of healthy individuals and Fibromyalgia patients. Brain imaging also confirm that there are pain related activations within the brains of FM sufferers that corroborates patients complaints of increased sensations of pain. Neurotransmitter studies have found that patients with FM have abnormalities in dopaminergic, opioidergic, and serotoninergic systems.
My Experience Of Fibromyalgia
For many years I avoided going to see my doctor when I was in so much pain and could barely walk because I felt too embarrassed about my pain. I did not want to face the doctors disbelieving look or to hear him say that my pain and difficulties were all in my head and not real pains. I expected a degree of understanding from my doctor of why I feel as dreadful as I did. Unfortunately I did not always get that understanding from the medical profession and I know there are other diagnosed and undiagnosed Fibromyalgia sufferers who are have the same problem of being believed. I am sure many have experienced scepticism from doctors, family and friends at some point or other..
Even with a diagnosis there are still some Doctors who are fairly dismissive of Fibromyalgia or some who blame everything on FM once a diagnosis has been given. I saw the attitude of some Doctors changing from 'it's all in your head', to 'It is just your Fibromyalgia', whatever my ailment might be. I have been told by a doctor ‘It is just your Fibromyalgia’, when I have gone in search of their help and I have left the surgery feeling disrespected, embarrassed and alone in my pain.
I used to live a very active life. I danced, which was what I loved to do. I hiked for miles, cycled for miles, played tennis, squash and football. I climbed trees and was very physical. I felt strong and well. I was aged sixteen when I started experiencing pain in my legs. My Doctor dismissed me and told me that my pain was all in my head or the pain was just part of growing up, ‘growing pains’. I was told the same by many doctors over the years that the pain was just my imagination. It was not my imagination but yet I started to question myself. Was it all in my head? Was all this pain and stiffness I was experiencing real? Of course it is real. I know my difficulties are real. I am in so much pain that some days are difficult to cope with, especially when I cannot stand up. I was dismissed time and time again and for many years I stopped seeking help. I lost trust in those who are meant to help me.
Along with my pain I experienced depression and anxiety. I was afraid of the future because I felt I could no longer work. I was afraid of being judged by others and afraid of ‘You look so well!’ attitude I always got. I even had someone say, ‘the pain cannot be that bad because you look well’. I started avoiding people so that I could not be judged.
I lived with the pain and fatigue of Fibromyalgia for over twenty years before I was eventually taken seriously and diagnosed and I know there are many others that have experienced difficulties with getting a Fibromyalgia diagnosis. Shortly after I was diagnosed with Fibromyalgia I was seen by a Rheumatologist and then diagnosed with Lupus, Raynauds, arthritis and other problems.
Medical Treatments of Fibromyalgia
Those diagnosed with FM are typically treated by their doctors with anti depressants, pain medicines, muscle relaxants, anti-inflammatory drugs and sleep medicines. Lyrica (pregabalin) became the first FDA-approved drug for specifically treating Fibromyalgia and symptoms of pain, fatigue and depression. Now the FDA have approved another 2 medicines, Cymbalta (duloxetine) and Savella (milnacipran).
Narproxen comes from the group of NSAID's, which means non-steroidal anti inflammatory drugs. It is a drug often prescribed for FM pain and some find that these drugs help even though FM is not a inflammatory condition. This drug is known for irritating the lining of the stomach causing bleeding of the stomach and ulcers cause severe stomach pain and should be taken with caution. Doctors often prescribe Omeprazole along with Narproxen to try and combat the damaged caused. However, even with Omeprazole, it is not a good idea to take Naproxen if you have an history of allergic reaction in the past to Asprin or other NSAID'S. or suffer existing stomach problems such as ulcers.
These treatments might not suit everyone. They did not suit me. I had side effects with medication including feeling drunk when I took Pregabalin. I felt flat, emotionless and numb. On the positive side, Pregabalin did help with my insomnia. Nsaid's just gave me severe stomach pain.
According to fibromyalgianewstoday.com there is a simple blood test called FM/a that has been developed by an American company which can quickly diagnose Fibromyalgia. FM/a is a highly sensitive tests that analyse our immune system looking for Cytokine and Chemokine protein patterns. FM sufferers show irregular patterns of these proteins and the degree of irregularity is scored from a range of 1 to 100. A score of 50 or higher is a confirmation that Fibromyalgia is being experienced by the sufferer. Now, instead of taking months or even years to find a diagnosis a blood test can give results within a week.
The manufacturer of the FM/a test state that, " FM/a ® reveals that this disorder, whether called fibromyalgia, fibrositis, the chronic fatigue syndrome or fibromyocitis, among other names is really an immune system dysregulation disease. Patients who test positive for FM/a ® will no longer be labeled neurotic, hypochondrical chronic complainers. Their’s is an actual illness with objectively measurable traits".