FMS/ME Awareness Ni Fibromyalgia/Myalgic-Encephalomyelitis Awareness-Ni
Awareness Program Because WE Matter!!!
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INDEX Page 3...........................Introduction Page 4........................... Fibromyalgia Symptoms Page 6........................... It's a Guy Thing: Men with Fibromyalgia Page 8........................... Fibromyalgia symptoms or not? Understand the fibromyalgia diagnosis process
Page 10.......................... Useful Contacts
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Hello, my name is David Moore Founder/CEO FMS/ME Awareness Ni Fibromyalgia Myalgic-Encephalomyelitis Awareness-Ni I was diagnosed with Fibromyalgia, approximately 4 years ago, although I believe that I have been battling with it for years before I had a diagnosis. After I was diagnosed with FM I went into a bad depression, not knowing much about this chronic condition, and not told much from the medical profession, I was left with my medication and told to try them out. Now not being able to do the things I was used to doing without feeling excruciating pains, my depression started deteriorating, more medication was given to try and counter act these moods Eventually after about 18 months, I started searching online for answers, and causes of FM. After noticing the amount of people affected and suffering, who have went through the same medical “black spots” as I call it, given medication and told to see how it goes! I started a group page on Face book, I was totally blown away at the amount of people even here in Northern Ireland who have Fibromyalgia, my group page then gathered momentum, people where joining on a daily basis, they wanted it as a closed group so that they could talk openly to others about their conditions, and experiences. Eventually FMS/ME Awareness Ni was started, a safe haven for FM patients to log into and not feel judged by anyone. We started having coffee evenings, and eventually on July 19th 2013, we opened our charity shop, and headquarters for the group.
Nineteen months on, our group online has grown dramatically, with 4 group pages representing four areas in Northern Ireland. Limavady (Main Group/ Headquarters) Dromore & Banbridge. West Belfast. Carrickfergus.
Access to these online groups can be gained by adding our Face book page, and asking for the relevant group you are after. www.facebook.com/fmsawareness.ni
I also run Information & Helpline from home, this is available Mon-Fri 9am-4pm 0845 600 3213 As Fibromyalgia is more seen as a woman’s illness, I thought it was about time that the men, who suffer with it, are acknowledged too. As I know how lonely a place it can be when you are looked at as if you are either lying, or being lazy, when in fact you are in excruciating pain from head to toe. I hope you find this leaflet helpful and informative. And please remember, if you suspect you may have Fibromyalgia, or any other illness, that you contact your GP as soon as possible.
Registered Charity Number (NIC100292)
Fibromyalgia Symptoms
Vision changes, including rapidly worsening vision Muscle & Tissue Symptoms
You've probably read about fibromyalgia symptoms such as pain, fatigue and fibro fog, but the list of possible symptoms is far-reaching and body-wide. Those tiny lists don't even begin to describe our experience! I put together this "monster list" of 60+ symptoms to let you know that you're not alone! The list is adapted from one put together by fibromyalgia author Devin Starlanyl along with recent research. Many of these symptoms also can be caused by other ailments and this list isn't intended as a diagnostic tool. Knowing the full range of symptoms, however, can help you track them either to help your doctor reach a diagnosis or to help you identify triggers.
Symptoms of Add Arthritis Symptoms Sleep Disorders Symptoms Health Symptoms Heart Attack Symptoms
Pain that ranges from mild to severe, and may move around the body (See The 7 Types of Fibromyalgia Pain) Morning stiffness Muscle twitches Diffuse swelling Fibrocystic (lumpy, tender) breasts (as an overlapping condition) Sinus & Allergy Symptoms
Allergies Post nasal drip Runny nose Mould & yeast sensitivity Shortness of breath Earaches & itchy ears Ringing ears (tinnitus) Thick secretions Sleep-Related Symptoms
Some of the following are noted as overlapping, which means they commonly occur with fibromyalgia but actually are conditions that need to be diagnosed and treated separately. We can have any combination of the following symptoms, and to varying degrees of severity.
General Symptoms
Delayed reactions to physical exertion or stressful events Other family members with fibromyalgia (genetic predisposition) Sweats Unexplained weight gain or loss Cravings for carbohydrate and chocolate Headaches & migraines
Light and/or broken sleep pattern with unrefreshing sleep Fatigue Sleep starts (falling sensations) Twitchy muscles at night Teeth grinding (bruxism) Reproductive Symptoms
Menstrual problems PMS (as an overlapping condition) Loss of libido Impotence Abdominal & Digestive Symptoms
Bloating & nausea Abdominal cramps Pelvic pain
Registered Charity Number (NIC100292)
Irritable bowel syndrome (as an overlapping condition) Urinary frequency
Cognitive/Neurological Symptoms
Difficulty speaking known words, other language impairments (dysphasia) Directional disorientation Poor balance and coordination Paresthesias in the upper limbs (tingling or burning sensations) Loss of ability to distinguish some shades of colours Short-term memory impairment Confusion Trouble concentrating Staring into space before brain "kicks in" Inability to recognize familiar surroundings
Heart-Related Symptoms
Sensitivity to odours Sensitivity to pressure changes, temperature & humidity Sensitivity to light Sensitivity to noise Night driving difficulty Sensory overload
Mitral valve prolapsed (as an overlapping condition) Irregular heartbeat (arrhythmia, postural orthostatic tachycardia syndrome (as an overlapping condition) Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition) Skin, Hair & Nail Symptoms
Sensory Symptoms
Depression (as an overlapping condition) Tendency to cry easily Free-floating anxiety (not associated with situation or object) Mood swings Unaccountable irritability
Pronounced nail ridges Nails that curve under Mottled skin Bruising or scarring easily Hair loss (temporary) Tissue overgrowth (non-cancerous tumours called lipomas, ingrown hairs, heavy and splitting cuticles, adhesions) Miscellaneous Symptoms
Emotional Symptoms
Panic attacks
Haemorrhoids Nose bleeds
Registered Charity Number (NIC100292)
It's a Guy Thing: Men with Fibromyalgia The relationship between fibromyalgia (FM) and gender has been a source of confusion and controversy among researchers and patients alike. Although FM is clearly more prevalent among women, the illness does afflict men as well. Little research has been conducted that measures the prevalence of fibromyalgia and estimates vary widely as to the proportion of male versus female patients. A 1999 epidemiology study conducted in London found a female to male ratio of roughly three to one. However, a 2001 review of the research literature in Current Rheumatology Reports stated the ratio was nine to one. The gender gap goes beyond the numbers. Research has shown that FM symptoms differ between men and women. A recent study in the Journal of Rheumatology found that men with fibromyalgia seem to have fewer and milder symptoms than female patients, including number/severity of tender points, fatigue, and irritable bowel. However, an Israeli study that compared 40 men and 40 women with FM, matched by age and educational status, found that men reported more severe symptoms than women, in addition to decreased physical function and lower quality of life. It's clear that more study is needed before the true nature and prevalence of fibromyalgia in men will be known. But what's a guy with this illness to do in the meantime? It seems obvious that a man's experience with this disease would be quite different from that of a woman, if only because of the sheer numbers. One man with FM writes, "at times I do feel isolated being the only male in most support groups. I try to keep my sense of humour." It's A Man's World? A common debate within FM discussion forums and support groups is whether male sufferers have it better or worse than their female counterparts. On the one hand, men may have a more difficult time getting diagnosis or treatment since FM is generally perceived as a "woman's disease." Balancing this, perhaps, is the widely publicized gender bias in physician's attitudes toward their patients. A 1999 study in the New England Journal of Medicine found that women complaining of chest pain are less likely than men to receive important cardiac testing. Research has also shown that doctors perceive female patients as more likely to make excessive demands on their time, which may be due to women's real tendency to voice more complaints and ask more questions than men do during a typical visit. The same study also found that women's complaints were judged more likely to be influenced by emotional factors. Still, while the loss of function and quality of life imposed by FM is devastating to both men and women, males with this illness may face some additional burdens. Though gender roles are gradually changing somewhat, men have long been expected to "feed and protect the family." Societal roles and expectations strongly influence perceptions of success and self-worth. Many men may base their self-worth on their ability to work, their income potential, or their employment position. Once afflicted with fibromyalgia, men often can't meet these expectations and must suffer even greater feelings of failure. Furthermore, males are socialized from a young age not to reveal or express their feelings and fears. The well-known fact that men are less likely to seek counselling or attend support groups suggests that men may experience even greater isolation. One young man with fibromyalgia explains, "I think it is important for people to know how hard it is for men with FM. Growing up you are taught to be tough, have a job, and support a wife and two kids whom are very hard to try to achieve. It is much more difficult for a man to maintain a relationship or explain his condition to friends."
Registered Charity Number (NIC100292)
Reaching Out Across Gender Lines There is support out there for men and women alike. Online support venues may help in bridging the gender gap, because the relative anonymity of online communication means that an individual's gender is not so readily apparent. In addition, men can more easily connect with other men like them, since they have access to the global community rather than just their local support group, where encountering another male may be less likely. Most men seem to find that even though online support networks may consist predominantly of women; these groups are extremely welcoming to members of both genders. Says one male patient, "All the women online readily accept me and are amazed that I am 'brave' enough to openly speak with them and not be intimidated by being the only male." The society we live in tends to associate self-worth with an individual's ability to be "productive." As FM sufferers, our old expectations simply become unrealistic. Continuing to judge ourselves and our lives by unrealistic standards can only lead to discouragement and hopelessness. As with any major life challenge, we need to find new measures of meaning and unique definitions of success. Managing our own and others' expectations is a challenge that everyone, with or without fibromyalgia, must face. Tips for Men (and women, too) for all individuals who suffer from fibromyalgia, but especially males, the following guidelines are helpful in managing the impact of chronic illness: 1. Do not attempt to push yourself beyond your present physical capacities. Accept and work within your present realm of abilities. 2. Set immediate, realistic, and obtainable short-term goals which can be achieved on a daily basis. 3. Talk, talk, talk. Express your feelings and fears--allow others to assist you in seeing yourself from a more realistic perspective. 4. Attend area support group meetings. Try to connect with other individuals that share your background or unique concerns. 5. Throw out "old lessons" about expectations that one must meet in order to be of value. Write "new lessons" for your life. 6. Realize that change does not necessarily produce negative results or consequences. Look for the gains which can be achieved by and through the changes. 7. Accept that you may not be as powerless as you feel or fear. While you may not have power over your own physical abilities now, or how others may perceive you, you always have absolute power and control over how you view yourself.
Registered Charity Number (NIC100292)
Fibromyalgia symptoms or not? Understand the fibromyalgia diagnosis process Fibromyalgia symptoms often mimic those of other conditions. Determining the true cause of your symptoms is key to receiving proper treatment. Fibromyalgia symptoms include widespread body pain, fatigue, and poor sleep and mood problems. But all of these symptoms are common to many other diseases. And because fibromyalgia symptoms can occur alone or along with other diseases, it can take time to tease out which symptom is caused by what problem. To make things even more confusing, fibromyalgia symptoms can come and go over time. That's why it can take a long time to go from fibromyalgia symptoms to a fibromyalgia diagnosis. No specific test for fibromyalgia
Fibromyalgia can't be easily confirmed or ruled out through a simple laboratory test. Your doctor can't detect it in your blood or see it on an X-ray. Instead, fibromyalgia appears to be linked to changes in how the brain and spinal cord process pain signals and how the body handles stress signals. Because there is no test for fibromyalgia, your doctor must rely solely on your group of symptoms to make a diagnosis. In the American College of Rheumatology guidelines for diagnosing fibromyalgia, one of the criteria is widespread pain throughout your body for at least three months. "Widespread" is defined as pain on both sides of your body, as well as above and below your waist. Old guidelines required tender points
Fibromyalgia is also often characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. In the past, at least 11 of these 18 spots had to test positive for tenderness to diagnose fibromyalgia. But fibromyalgia symptoms can come and go, so a person might have 11 tender spots one day but only eight tender spots on another day. And many family doctors were uncertain about how much pressure to apply during a tender point exam. While specialists or researchers may still use tender points, an alternative set of guidelines has been developed for doctors to use in general practice. These newer diagnostic criteria include:
Widespread pain lasting at least three months Presence of other symptoms such as fatigue, waking up tired and trouble thinking No other underlying condition that might be causing the symptoms Excluding other possible causes
It's important to determine whether your symptoms are caused by some other underlying problem. Common culprits include:
Rheumatic diseases. Disorders such as rheumatoid arthritis, Sjogren's syndrome and lupus all can begin with generalized aches and pain. Mental health problems. Disorders such as depression and anxiety often feature generalized aches and pain.
Registered Charity Number (NIC100292)
Neurological disorders. In some people, fibromyalgia causes numbness and tingling, symptoms that mimic those of disorders such as multiple sclerosis and myasthenia gravis.
Tests that may be needed
While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:
Complete blood count Erythrocyte sedimentation rate Thyroid function tests Vitamin D levels Your doctor may also perform a careful physical exam of your muscles and joints, as well as a neurological exam to look for other causes of your symptoms. If there's a chance that you may be suffering from sleep apnea, your doctor may recommend a sleep study. More clues for fibromyalgia diagnosis
People who have fibromyalgia also often wake up tired, even after they've slept continuously for more than eight hours. Brief periods of physical or mental exertion may leave them exhausted. They may also have problems with short-term memory and the ability to concentrate. If you have these problems, your doctor may ask you to rank how severely they affect your day-to-day activities. Fibromyalgia often coexists with other health problems, so your doctor may also ask if you experience:
Irritable bowel syndrome Headaches Jaw pain Anxiety or depression Frequent or painful urination Possible fibromyalgia triggers
In some cases, fibromyalgia symptoms begin shortly after a person has experienced a mentally or physically traumatic event, such as a car wreck. People who have post-traumatic stress disorder appear to be more likely to develop fibromyalgia, so your doctor may ask if you've experienced any traumatic events recently. Because a genetic factor appears to be involved in fibromyalgia, your doctor may also want to know if any other members of your immediate family have experienced similar symptoms. All this information taken together will give your doctor a much better idea of what may be causing your symptoms. And that determination is crucial to developing an effective treatment plan.
Registered Charity Number (NIC100292)
FMS/ME Awareness Ni Registered Charity with Northern Ireland Charity Commission
Useful Contacts Aware Defeat Depression Helpline: 08451 20 29 61 (Monday to Friday - 9am - 1pm) Email: info@aware-ni.org or help@aware-ni.org www.aware-ni.org Services: Support groups and self-help for depression/manic depression.
PIPS CHARITY Tel 0289 080 5850 Tel 0800 088 6042 Email: info@pipscharity.com www.pipscharity.com Services: Delivers suicide prevention training.
FMS/ME Awareness Ni Unit 7 6 Catherine Street Limavady Co. Londonderry BT49 9DB
Tel 0287 776 8066 Helpline/Office (Mon to Fri 9am-5pm) 0845 600 3213
Registered Charity Number (NIC100292)