The effect on family support for patients who are suffering from fibromyalgia or chronic pain is an essential factor in the care of these conditions, especially during this epidemic. While only one person in a family may suffer from fibromyalgia or chronic pain. the entire family is affected by it.
Everyday Health says “If a person has a chronic condition, it’s going to affect the people who care about him or her as well,” says Phyllis Talarico, former patient services coordinator of the National Fibromyalgia Association and founder of the North Orange County Fibromyalgia Support Group in Yorba Linda, Calif. “Education is vital for you to understand the symptoms and help them find the right treatment.”
Effective strategies for supporting someone in chronic pain has to start from the one closest to the patient. Part of accepting the situation is managing their expectations. Once the family has identified what is likely to change, allow the patient to grieve for the things that have to fall by the wayside (at least for now) and let them go. Then focus on the areas where you foresee big problems and work toward realistic solutions. There are many undiagnosed patients at the moment due to COVID-19 but that doesn’t mean they don’t need help.
Recently, my own condition reared it’s ugly head and although my husband is right by my side to help me, my daughter really wanted to help more but it’s just not possible at the moment. Many Fibromyalgia sufferers who have help from Fibromyalgia and Pain clinics will be getting no help at all at the moment with the only support through online groups and websites.
With most GP appointments either via telephone or online it’s essential that you keep a diary or ask a family member to write one for you of how and where your pain is on a daily basis.I have written before that I was diagnosed after my spinal consultant asked me to write down all my pain symptoms for two weeks. When he read my diary he immediately said he thought I was also suffering from Fibromyalgia and sent me to see a Rheumatologist.
Of course, it’s not an ideal situation for the family members either, they 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.
Fibro Treatment Group points out that ‘The symptoms may be invisible put the pain is real. If you have fibromyalgia you’ve likely been told “but you don’t look sick.” A common misconception among those without the condition is that because the symptoms aren’t outwardly manifest or visible, they are not real. This is why we sometimes call fibromyalgia an “invisible illness”. While the symptoms may not be obvious and we may not look sick – the illness is very real.’
Finally, there are now thankfully a number of support groups set up around the UK and indeed the world. I guess one of the best places to look other than Google is the NHS website which has a list of support groups in the UK.