Before I start, I will answer a question that I always get "Are you contagious?" the answer is NO-Chronice Fatigue Syndrome and Fibromyalgia are non-communicable diseases, meaning you cannot get sick from me.
Regardless of the name you give it: Whether it be Chronic Fatigue Syndrome(CFS), Chronic Fatigue Immune Dysfunction Syndrome(CFIDS), or the common name in England; myalgic encephalitis, or even the early name of the yuppy disease; CFIDS is a real disease. Despite what was thought in the past, Chronic Fatigue Immune Dysfunction Syndrome(CFIDS) is a real physical illness with real symptoms. In the 80's, when CFIDS was discovered, physicians and doctors would label a person with undiagnosable symptoms as having CFIDS. It was mostly used as an umbrella term, until 1988, when it was formally defined by the U.S.Centers For Disease and Control.
Those who were labeled as CFIDS earlier on, were considered hypochondriacs or people suffering with a mental problem, such as clinical depression. Only since the late 80's has it been proven that CFIDS is a real disease and that people affected experience real pain and real symptoms, it is not all in their heads, as doctors believed.
At this time there is no etiology, or known cause for CFIDS, however there is some evidence that it may result from a flaw in the immune system. A few other suggestions have been researched as well.other speculative-cause for CFIDS, is a virus; such as Epstien Barr's Virus(EBV) or Mononucleosis(mono) that stayed in the system, and resulted as CFIDS. There is also reason to believe that it could be brought about from candidiasis, a yeast infection in the body. Low levels of certain hormones, or neurally mediated hypotension(low blood pressure) have been linked to CFIDS as well." (Source unknown-pg. 47-48)
"Many people with CFIDS also have a joining disease known as Fibromyalgia: a nonarticular rheumatic disorder characterized by diffuse musculoskeletal pain, chronic fatigue, and non restorative sleep. Many believe that CFIDS and Fibromyalgia go hand in hand. Their symptoms are very similar to one another and seem to be linked together". (JAAPA-pg. 27)
The symptoms that patients can experience with this elusive and mysterious disease vary from one person to another. They could be as mild as minor fatigue and flu like symptoms, or as harsh as being debilitating to ones life. People with Chronic Fatigue Syndrome(PWC) lives are changed extremely with the onset of this disease. They may have to give up dreams and goals that they once held attainable. Some PWC's have to give up work, or school, because of the extremity of their symptoms.
Some symptoms include:
* Physical tiredness
* Mental tiredness
* Muscular and joint pain, without swelling
-also a symptom of Fibromyalgia(FMS), one of the most predominate symptoms of FMS symptoms
* Painful lymph nodes and sore throats
* Slight fever or chills
* Headaches
* Vision problems(blurriness, floaters, double-vision)
* Depression
* Anxiety and panic attacks
* Sleep disorders
* Dizziness
-associated with the Neurally Mediated Hypotension(NMH), low blood pressure.
Or vertigo, disequilibrium
* Cognitive Problems
-difficulty concentrating
-memory lapses
-forgetfulness
-difficulty with information processing
For many patients-myself included the cognitive impairment is one of the most debilitating and disconcerting symptoms occurring with CFIDS. Many adolescents or children with CFIDS are forced to be on homebound schooling, which I was for a year. Advocates for CFIDS are trying to educate; doctors, teachers, families, patients, and the general public about this disease.
Some patients are even forced to leave full-time work or forced to become homebound. CFIDS as with any disease is a life changing illness. It can crush dreams and goals, and challenge families. PWC's often times feel alone and isolated. It seems that only other PWC's or people suffering from other chronic illnesses can relate andunderstand what is going on and how the person affected feels.
This isolation can cause one to be depressed, feel hopeless, and humbled. Often times it is a God-send to find other PWC's out there. Through support groups, and even on-line correspondence a PWC can find comfort in knowing they are not alone. There are people that understand and can relate. Many times when PWC's connect with each other there is an instant bond formed.
"Victims of this disease can be of all ages, race, and cultures. But it's mostly been found to occur to those between 22 and 44 yrs. old. Three times as many women suffer with CFIDS than men." (Source Unknown-pg. 47)
Not much research has been done on adolescents and children with CFIDS, but it is being recognized that CFIDS can occur in children and adolescents as well. Before the research, many PWC's most likely started out with the disease as children or teens, and only had it diagnosed in their adult lives.
There are many different treatment suggestions for CFIDS, however there is no known cure, but there are things a patient can do to alleviate the symptoms and prevent bad flare-ups. Doctors will basically treat the symptoms, rather than treat the illness. PWC's not only need symptomatic treatment, but emotional support as well. Psychotherapy is used to help the PWC deal with their emotions and the stresses involved with this disease. Many times a PWC will be put on an antidepressant. These antidepressants not only help with depression, but may also help with pain and sleep problems, usually found with the Fibromyalgia.
NSAIDS(Nonsteroidal anti-inflammatory drugs)such as Naprosyn, Flexeril, Relafen, or Ibuprofen(advil) help with the pain experienced with CFIDS and FMS. If a PWC has the low blood pressure they can be treated with blood pressure medicines or beta-blockers.
"Alternative methods of treatment include: holistic medicines(herbs and meditation), chiropractic care, massage therapy, yoga and other forms of relaxation techniques. Although the holistic treatments haven't been researched nearly as much as the treatment with drugs, PWC's find relief and improvement with some holistic techniques."(JAPPA pg. 32)
Mild and monitored exercise, such as walking, stretching, or water aerobics can help as well, it gets the body moving and the blood pumping. Also a balanced diet and an elimination of foods that exacerbate symptoms help.Too much is not good, over-exertion can lead to an exacerbation, or flare-up of the disease.
It is said that stress is a big factor in how a person feels. This is especially true with a person suffering from this disease. A PWC's lifestyle usually will have to change drastically to accommodate and help the treatment work. These people should learn to slow the pace of their lives down, which sometimes means giving up dreams and goals. But this doesn't mean the end of everything, many people find hidden talents and new hobbies in 'slowing' down. This can be a good compensation mechanism, in losing something(previous lifestyle) and gaining another thing(new lifestyle, perhaps more inspiring and enlightening than the original). A person should reduce their exposure to physical or psychological stress. Having a chronic illness in itself is stress enough and the more stress you have, the worse your symptoms will become. (Natelson, Facing and Fatigue a practical approach)
It is often hard to come to terms with an illness, especially a chronic illness. It is hard on the person suffering, as well as the friends, family, and associates of the person. They need to be taught that a PWC will need a sympathetic ear most of the time, more time to get house-hold chores and work done, and time alone to cope. Many non-suffers think that the PWC is just being lazy and is using their disease as an excuse, this is very untrue. A PWC cannot help that they don't have the energy to do what is expected of them.
* Concern: created when the illness lingers and doctors can't seem to find the cause or diagnoses for it.
* Fear: caused due to uncertainties, that an uneducated, more serious disease hasn't fully been ruled out.
* Denial: Many patients tend to "deny" they have this disease and try to "live their lives." but find out that their body controls them and is out of their control.
* Temporary Relief: When a name is given to the disease, often-times reality sets in that having a 'name' isn't the cure
* Frustration: feeling that the body has let you down. Also no one understanding you.
* Unfairness: Feeling that something has been taken away "cheated of going on with their usual life" worthlessness can be felt.
* Anger: Because doctors can't find the reason for you being sick, some think it's 'in your head'. Money spent, no results showing up. The reason being, is that CFIDS has no lab studies or tests that say "POSTIVE, yes you have this disease" and there are no physical signs seen.
* Loss of Personal Control: CFIDS takes over your body and there's not much you can do. It doesn't care that you hate it and want it to leave. It doesn't care that you want to be living a normal life, it is like a monster.
* Devastation: Realization that dreams and aspirations can be crushed. Plans destroyed. Disability can occur
* Hopelessness: Depression, some people have suicidal tendencies when really hopeless. Psychotherapy is a big help with this emotion.
* Mourning: Realize that your life may, never ever be the same again. A 'loss' is suffered not just personally, but many times friends and loved ones tend not to understand the illness or the loss of an energetic person or the close bond that they had, before the illness. It is sad.
* Humbling: Occurs when other PWC's connect
* Learning to Cope: After knowledge that medical community doesn't 'have the answer" for CFIDS. You must reach deep within yourself and find your wounded spirit. Educate yourself, and family and friends about CFIDS, become an advocate. Realize it will not kill you and is NOT the end of the world, just of a certain life-style.
* Acceptance: Goes hand in hand with coping and learning to prioritize, but hey "LIFE GOES ON"
* Hope: Desire and hope that someday a cure will be found, or prevention discovered. Sometimes this emotions can be the strongest and most helpful.
* Understanding: The greatest 'gift' a non-sufferer can give to a PWC. Stick by them and help them through this illness, they can't handle this alone." (CFDAYS-pg. 13)
In having this illness you have to learn to cope with the pain and fatigue and many other symptoms. I know this firsthand. You have to remember that although there is no cure for this disease, there are treatments to help. The biggest thing to remember is you have to help yourself, no one and nothing can do this for you; a fact that I'm finally realizing myself.
NEW!!! "Fibromyalgia: To Know It Is To Live It" Bio report '01
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Links to helpful CFIDS and FMS sites
If you have AOL good place for Chronic Pain Relief
Wonderful site by a CFIDS teen
Chronic Fatigue Syndrome Home Page
Chronic Fatigue Syndrome, NIAID Fact Sheet
Wonderful site for TEENS and CHILDREN with CFIDS
Another AOL site-InteliHealth - Home to Johns Hopkins Health Information: Fibromyalgia
AOL-Fibromyalgia
AOL-Chronic Fatigue
AWESOME Fibromyalgia links
WONDERFUL page on FAQ's-and fun stuff too! Like Fibro-terms *hehe*
factsheet
more AOL
Fibromyalgia link
Kealalaina's Fibromyalgia information and links for patients and family.
Pain CHAT on AOL
MISSY's BUTTERFLY BORDERS and BACKGROUNDS
