Advice on Getting Your Family to Believe You Have Fibromyalgia

Family Involvement

Expert advice from Leslie Epstein, M.S., MFCC

While only one person in a family may suffer from fibromyalgia the entire family is affected by it. Your family faces a troublesome time while learning to cope with the anxieties, fears and trauma produced by fibromyalgia. Thus, it is essential that the family become part of your therapeutic program. More explicitly, family support is crucial to the successful management of any chronic and painful condition.

A common problem for patients is disassociation, where a family member may want to deny that their is anything wrong with you. That family member seems to feel that if he/she pretends nothing serious exists, the illness and its problems will go away. This type of person rationalizes that "if their is nothing I can do (about my loved one having fibromyalgia), I may as well act as if nothing is wrong and go on living my own life." The patient, in turn, resents this apparent disinterest and interprets it incorrectly to mean that their family member does not care, creating added stress.

Open communication among family members is important. The family must learn to discuss all feelings that arise, including frustration, resentment and impatience. Expression must not be restricted. The patient should be comfortable discussing personal needs and feelings with the family, and the converse should also be true. In this connection, it is vital that changes in family roles and responsibilities be discussed openly in order to prevent repressed anger and resentment, since hostile family attitudes may cause a patient's symptoms to flare.

The difficulty seems to be in finding the best response at a particular time: empathy when the symptoms appear to be worse; support during times of fear and crisis; and allowing patient control in periods when they are feeling better. Thus, a good system of communication within your family is essential.

Finally, family members are not immune to depression. It is frustrating to watch people who are sick and in pain, and yet to have little control over their illness. This can anger family members, who typically are unwilling to vent their frustrations onto you for fear of inducing more stress and causing an exacerbation of your condition. Instead, the family member's anger turns inward, creating depression.

From Fibromyalgia Network, P.O. Box 31750, Tucson, AZ 85751

Wonderful Link

http://linzworld.wordpress.com/2008/03/27/50-ways-to-help-a-chronically-ill-friend/

This link rocks!! Thats all I need to say.

May 12 Awareness Day

Awareness Day. what do you all have planned? I'm taking donations. part to go to getting my own domain finally and to donate to FM Network. let me know if your interested. Let me know what u all have planned. :-)

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Myofascial Pain Syndrome - Topic Overview - Health.com

Myofascial Pain Syndrome - Topic Overview - Health.com

Most people have muscle pain from time to time. But myofascial pain is a kind of ongoing or longer-lasting pain that can affect the connective tissue (fascia) of a muscle or group of muscles. With myofascial pain, there are areas called trigger points. Trigger points are usually in fascia or in a tight muscle.


Also, I have what's known as Chronic Myofascial Pain Syndrome. Which is way worse than this article makes it sound. 


http://www.health.com/health/library/topic/0,,uz2319_uz2320,00.html

Fibromyalgia Fatigue Is More Than Being Tired

by Kristin Thorson, Fibromyalgia Network Editor
Posted: November 22, 2010

Detailed interviews of 40 fibromyalgia patients from three countries (United States, Germany and France) reveal that fatigue is the second most bothersome symptom after pain.*

The investigation was fueled by previous studies involving patient feedback that implied fatigue was a symptom that deserved to be assessed in treatment trials. Currently, the success of a therapy primarily hinges on how well it reduces fibromyalgia pain, with little or no attention paid to fatigue. In addition, there is no clear understanding of the key features of fatigue that need to be measured.

The interviews were conducted with open-ended questions, such as "Tell me about your experience of having fibromyalgia?" So the goal of the interviews was not to specifically inquire about fatigue because the investigators wanted to hear what patients had to say spontaneously about their symptoms.

The average duration of fibromyalgia symptoms for the 40 participants was 6.6 years, the average age was 49, and 70 percent were female. When asked about their experience with fibromyalgia, the following symptoms were spontaneously reported:

• pain (78%)
• fatigue (43%)
• sleeping difficulties (18%)
• mobility problems (10%)

Remember, this was based on their unsolicited comments about fibromyalgia. When asked to rate the top three symptoms, the order was basically the same but the percentages were much higher.

"Fibromyalgia fatigue was described as an overwhelming feeling of tiredness that was not relieved by sleep or rest and is often not in proportion to the effort exerted (i.e., participants described becoming tired after doing very little)," state the authors. The participants also made it clear that their fibromyalgia-related fatigue was not just "normal tiredness."

The participants further described their fatigue in the following eight categories that many of you can probably related to:

• Overwhelming feeling of tiredness (43%) - sometimes to the point that they were unable to do anything
• Not relieved by resting or sleeping (38%) - the fatigue persisted even after what the patient felt was a good night's sleep
• Not proportional to effort exerted (63%) - it doesn't take much at all to trigger this symptom
• Feeling of weakness or heaviness (28%) - body feels heavy, weak, or not having any strength
• Difficult to get motivated (83%) - it takes a large amount of effort to do things, such as just getting out of bed and "get going" in the morning
• Difficulty doing the things they want to do (60%) - the fatigue/tiredness makes it difficult to do what they want or need to get done
• Having to do things more slowly (38%) - it takes longer to get things done and some patients felt it was related to the feeling of heaviness or weakness
• Difficulty to concentrate, think, or remember things (68%) - fatigue/tiredness affects ability to concentrate, difficulty remembering things, trouble thinking clearly or staying focused

"Men and women described the fatigue experience and its impact in much the same way," write the authors. Summing up their findings in fibromyalgia, "fatigue appears to be the second most important symptom and one that has considerable impact on patients' lives." Based on the diversity of fibromyalgia-related fatigue symptoms, it will be a challenge to assess the impact of this symptom in treatment trials. However, the results from this study may lead to better tools to accurately measure "fatigue" in fibromyalgia patients.

* Humphrey L, et al. BMC Musculoskeletal Disorders 11:216, September 2010.