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.
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. Many have difficulties with symptoms for years before they get a diagnosis and so many sufferers are told it is all in there head.
Every part of your body feels pain.
Daily living is often affected as a result of feeling in constant pain, stiffness and fatigue. People might find that their career or relationships are affected as a result of FM. Feeling and managing constant pain can mean life and everything we do has to adapted to deal with FM.
It is a condition that is still misunderstood even though it is the second most common rheumatic disorder with Osteoarthritis being the first.
It is an emotional strain trying to cope with and come to terms with being in constant pain and feeling totally exhausted. Sometimes with FM there is a background pain going on. You know the pain is there but you can have a fairly normal day with background pain and stiffness but when the pain turns in a Fm 'flare' life can get a little more difficult to cope with.
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.
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.
Narproxen is a drug known for irritating the lining of the stomach causing bleeding of the stomach and ulcers. They can cause severe stomach pain and should be taken with caution.
Doctors often prescribe Omeprazole which is a 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. Whenever I took Nsaid's I experienced excruticating pain in my solar plexus. Camera investigation found inflammation of my stomach and eventually I was told that gave me severe stomach pain.
Loss Of Independence
Many who are diagnosed with FM might not be able to care for themselves and lose their independence. Need to become dependent and rely on others, because of FM and all symptoms associated.
Some who experience FM might have to make big changes in their lives as a result of this condition. It can be a very difficult to come to terms with a life of pain and stiffness but with the right attitude, treatment and management of the condition FM, life can be enjoyed.
Symptoms Of Fibromyalgia
Memory problems are part of the syndrome and many who live with FM find that they often have difficulties thinking, remembering and concentrating. This thinking and remembering problem is called 'Fibro fog'. According to a 2015 study of Fibro fog some sufferers find that dealing with the loss of mental clarity can be more distressing than all the pain and stiffness that is experienced.
Insomnia. Pain of FM can be accompanied by sleep problems either not being able to sleep or sleeping for a couple of hours at a time. Without much sleep the body cannot rest and restore itself. Lack of restorative sleep can affect everything you do as the brain and body struggles with exhaustion leaving you feeling drained of energy and drain of the life force that keeps us moving and living. Severe fatigue or any fatigue disrupts day to day life.
Many sufferers of FM might also experience anxiety and depression as this is a distressing condition. Some lose their jobs and careers because of difficulties due to FM. Some are unable to work and are afraid of what the future holds.
IBS or Irritable Bowel Syndrome, is chronic pain of the stomach. If you are diagnosed with FM you are more than likely to be experiencing IBS. Symptoms include abdominal cramps, constipation and diarrhoea. IBS is not fully understood but more women than men experience IBS. The treatment of IBS would need to include lifestyle changes and changes in diet.
Chest pains can be a symptom FM and this can be caused by a condition called Costochondritis. This can be an added worry for FM sufferers as many feel like they could be having a heart attack. It is important that those with FM do not assume that chest pain is a result of Costochondritis. Always seek urgent medical help, by ringing emergency services if experiencing chest pain.
The symptoms of FM can vary quite a lot from person to person, and may be severe one day but mild the next. FM 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.
Symptoms Fibromyalgia Flare
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. Painful muscle spasms and leg cramps can make walking difficult for some. Some find, like I did, that they might need to use a walking stick.
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 feels dreadful and the whole of the body, from the toes to the head is in pain. 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, fatigued and unable to function properly.
My Experience Of Fibromyalgia
For many years I felt dismissed by doctors because I was told my pain was all in my head. There were times I could barely stand and walk as a result of so much pain and stiffness. I was diagnosed twenty years after first asking for help with my pain.
Along with the pain of FM, I experienced depression and anxiety. I could no longer work and felt judged by others with the ‘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 felt lonely and isolated for a long time as people just stopped calling in to see me.
Shortly after I was diagnosed with FM, I was seen by a Rheumatologist and then diagnosed with Rheumatoid arthritis, Lupus, Raynauds, arthritis and other problems so none of it was in my head or 'just Fibromyalgia.
I feel pain and terrible stiffness in my neck, shoulders, hands, knees, lower legs, feet and toes.
I experience pain and difficulty every day. Some days are better than others and some days are really bad to cope with. At one time I did not cope very well. Mentally and physically drained I felt my life was not worth much and I got no pleasure from life.
When I am having a FM flare I feel dreadful. Every part of my body hurts. Painful spasms in my back make it very difficult to stand up straight and walk. My feet tingle, are freezing and they hurt. Its hard to take a step without pain in my feet. I can walk okay with a stick with FM but when a flare hits, I cannot stand up.
During a flare fatigue hits hard. One week I laid on my bed, absolutely drained and I had no motivation or energy to move. I had on suite, but found getting to the toilet difficult and I was scared. I thought I was fading away slowly and life was draining out of me.
Doctors seem angry and frustrated with me. After radiation and chemotherapy for cancer, I had horrific flare and with it came insomnia, RA and Lupus pain and it was too much to bear and I I went to doctor. Doctor said my insomnia was due to mental health problems. He gave me a referral form to get some mental health help for my insomnia.
How I Manage Fibromyalgia
I adapted my life to deal with Fibromyalgia.
The first thing I did was reduce the stress in my life. I did not spend my time with negative people or in negative environments. I reduced stress and the possibility of stress as much as possible.
I do not take medication. I find that medication usually has an adverse affect on me. I was just a zombie on meds and I fell down a lot. Medication for FM pain made me feel drunk. I have heard from others that medication has helped them. We are all different and I glad that, for them medication has helped.
FM can mess up your life unless you stay focused on what you want. I set goals, short and long term goals in every aspect of my life that are going to give me some pleasure. I try to focus on my goals which is not always easy.
I use a goal planner to plan my goals and keep me focused. I write a plan for each day and a to do list. I find that a to do list keeps me on track, keeps my brain active and keeps me organised.
I cannot work so I think of other ways I can be of service to others in need by writing about my experiences.
I listen to inspirational speakers', relaxation video's, meditation video's on Youtube because FM can leave me feeling low in mood.
I learnt to focus on myself and not run around after other people. I have learnt to take care of my needs and to love myself enough to be easy on myself
I put down the guilt, embarrassment and anger about suffering from FM
I keep a journal and if I am in pain I write down in my journal. I write about how I am feeling and how I want to feel in my journal and it helps. Journal-ling helps me to take the focus from the pain that I am experiencing and shift it to focusing on a goal.
I rest when I need to and not when it is convenient to others.
I keep active. An early evening walk is good for the mind and body. It helps to settle and relax the mind which helps to reduce the pain. I have to pace myself and know my limits in any kind of exercise program.
I practice meditation whenever I can. Meditation helps to quieten the conscious mind of negative chatter and stress. When my mind is calm and free from stress my body eases off with the pain.
I have learnt to love and take care of myself and my needs. I have learnt to put myself first.
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".
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Thanks for reading.
Update On Fibromyalgia
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This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.