Parents and Children with Fibromyalgia
Fibromyalgia, for so many years a condition that went undiagnosed or whose sufferers were scoffed at, has finally been acknowledged by many in the medical profession. Sadly, people who have had to deal with the limitations, pain, and discomfort of the chronic condition may wonder if it isn’t too little too late. It may well be that way for the older people, but there are many young people, teens and young adults, who suffer with fibromyalgia and perhaps their lives will be easier because of the recognition.
Proven to be Genetic in Some Cases
The question of a genetic predisposition to fibromyalgia has been on the table for decades. Recently the Journal of Rheumatology carried a study that indicates they have found a gene that is responsible for fibromyalgia. A biotechnological company in New Orleans, Autoimmune Technologies LLC, announced a new antibody found in the blood for many patients with fibromyalgia syndrome (FMS). A patented test called the Anti-Polymer Antibody Assay (APA Assay) is able to find the antibody in nearly half of FMS patients and an even higher number in people who fit the diagnostic criteria of the American College of Rheumatology.
The lead investigator of the study, Dr. Russell B. Wilson said, “Our results show that there is a unique immunological response in many fibromyalgia patients.” The antibody may be identified with one of many causes since it appears in those with more severe cases of FMS. This means that the antibody may be used as a laboratory marker for FMS. Currently it is going to be used in research only; however, it may not be long before it is available outside of the research community.
What does this mean for people who suffer with FMS? For those who have children who have exhibited symptoms of fibromyalgia, it means that there is a gene that is inherited which may cause the disorder. Years of frustration have been the experience of researchers and doctors who have tried to understand what causes FMS. There are a number of possibilities, but knowing there is also a genetic cause makes research for preventative treatments more viable and the offspring of people with the disorder can have more hope than their parents have had.
Negative Effects on Kids
Children with the syndrome are often negatively affected by FMS. Usually misunderstood and under-diagnosed, they have to contend with all kinds of social and emotional issues that complicate and compound their illness. Teens with the disorder often miss a lot of school and are unable to be involved in many extra-curricular and social activities because of pain and exhaustion. Chronic depression and migraines are difficult for a young person to communicate to friends and teachers. Ignorance causes people to say and do hurtful things and young people can sink deeper into a depressed state.
Making School Easier
Young people in school may have trouble with their teachers understanding their condition – that it is real and not a way to escape the classroom. Parents of children with FMS owe it to their kids to educate the teachers about the problems their child is facing. Unfortunately, pain and chronic illness is something that is hard to explain to healthy people. Parents who also suffer with the condition have the added ability of knowing how their child is feeling and can explain it to other adults.
Special concessions can be made to accommodate kids with FMS in the classroom setting. Some things that can be adjusted in order to make life a little easier for children with FMS while they are in school include:
· Allowing a recording device to record classes where a lot of notes are required. Often children with FMS experience serious pain in their hands, shoulders, and neck when they have to write a lot.
· Extra time to take tests. Again, writing can be an excruciating endeavor. If the child has to write the test, additional time makes it easier for them to complete the work. Teachers may be willing to give oral tests in some cases.
· A written explanation and FAQ sheet can help teachers (and students) understand the illness and become better educated.
· A table with an adjustable chair can do wonders for taking strain off the arms, back, neck and shoulders of afflicted children.
· Two sets of textbooks – one for school and one for home takes the stress of carrying heavy books off the child’s body.
· Later start times. Often, just getting up in the morning is a difficult thing. It is important for those with FMS to stretch, stay warm, and nourish their bodies properly. For young people with FMS, this alone can take a couple of hours. If they can start school a little later, then the pressure is off and they can take care of their needs adequately before they go to school.
Perhaps the most important aspect of FMS between children and their parents is communication. Parents with FMS understand their children because they deal with the pain themselves. Parents who do not have the disorder understand their children because they have walked through their suffering and frustrations with them. By keeping the lines of communication open, children can get the help and support they need from those who are closest to them.
Learning to Cope:
FMS is a difficult illness to cope with. For strategies and a better understanding of what life is like with FMS, read more on this site.