Jennifer Brea
What happens when you have a disease doctors can’t diagnose?
This happens all the time. A lot of people with fibromyalgia for example have experienced how hard it is to get a diagnosis.
So we thought we would share this brilliant video by Jennifer Brea
Tips for a Healthy Life After Facing a Difficult Diagnosis
When diagnosed with an aggressive and potentially life-threatening disease, like cancer, it’s natural to become overwhelmed with all of the “what if’s and what now’s” and while you’re eager to fight your disease, it’s difficult to know where to begin. Although your diagnosis may be one of the most challenging things you have or will face, your health is now even more important than ever. Here are some tips for adjusting to a difficult diagnosis, taking care of yourself, and making the best of your life:
Educate Yourself
Unless you’re a medical professional, such as an oncologist, you may know very little about your recently diagnosed disease. Take mesothelioma, for example. Mesothelioma is a cancer that typically affects the lungs and is related to asbestos exposure. Since mesothelioma is often diagnosed decades after the exposure occurred, many patients have no idea they have the cancer in their body until they are faced with a late stage diagnosis.
While the initial diagnosis can be daunting, especially if faced with an aggressive and advanced stage, it’s still advantageous for patients to learn as much as they can about mesothelioma and what types of treatment options are available. When your health changes dramatically, you, as a patient, have a right and responsibility to gain as much information as you can about your disease (regardless of the stage). Not only can you help yourself, but you’re raising awareness and helping others around you.
Surrounding yourself with family and friends that care about you and having a support system can help you get through some of your roughest times. Whether your neighbor gives you a ride to your chemotherapy treatments, your best friend brings over a week’s worth of food, or a co-worker offers to go on a walk with you, allow these people to help you and be part of your journey. You may want to push people away and you may get tired of talking about your diagnosis, but the people around you want to help and their offers may be the only way they know how to show support. If you don’t have a support system of your own, consider joining a support group of people who are facing the same health challenges as you.
Whether you exercise regularly or not, exercise is a great way to stay healthy when you body is fighting a disease. Not only does exercise boost your serotonin levels, which can help you overcome depression and fatigue, but even taking a short walk outdoors can give you a much needed dose of Vitamin D. Before you start exercising, always check with your doctor and he or she will help you choose a suitable exercise regime such as walking or swimming.
In addition to making exercise part of your daily routine, a healthy diet and a good night’s sleep of at least 7 to 8 hours per night will benefit you through your recovery.
When facing a tough diagnosis, it’s natural to be afraid and experience the five stages of loss and grief. You may feel helpless and you may feel depressed, but studies show that if you choose to have a positive attitude about your life and your diagnosis, your recovery may be faster and your health may improve. By having a positive outlook, your physical, emotional, and mental health may experience a significant boost. Positive thinking may come easier for some than others, but by surrounding yourself with support and practicing healthy routines, you may find it easier to be optimistic about your future.
Nobody wants it to happen. But wrong diagnosis is much more common than we are lead to believe.
According to this infographic up to 40 of medical diagnosis are wrong. It looks at various conditions such as Parkinson’s disease, fibromyalgia, chronic fatigue syndrome, Lupus, celiac disease, multiple sclerosis, hydrocephalus, aortic dissection and hypothyroidism. It also has a very useful brief guide to the early symptoms of each condition.
Have you ever been misdiagnosed? What ever response you might be interest in taking our poll on the misdiagnosis of a medical condition here.
Thanks very much.
From Visually.
Thanks for dropping round to our latest poll.
Poll of the Week
Today we are looking at the extent of misdiagnosis. It would be great if you could take part in our poll below.
Please feel free to use the comments box to tell your misdiagnosis story!
Fibromyalgia
Having been involved in researching different medical conditions for nearly 8 years we thought it would be interesting and important to find out how things have changed over the years. In particular we were concerned about the ease or difficulty in getting diagnosed with fibromyalgia.
Our research painted a very unhappy picture. In many cases a diagnosis of Fibromyalgia took years. In some very worrying cases a number healthcare professionals refused to accept the existence of the Fibro. So for many people fibro was an invisible illness, both medically and socially.
So our main interest was to what extent has this situation changed as regards to people suffering from fibro. As we run a Facebook group providing support for people with fibro and Chronic Fatigue Syndrome we decided to ask our members that very simple question “How easy was it to get diagnosed with Fibromyalgia?”. To check the page out please go to https://www.facebook.com/FibromyalgiaandCFSTalk
I have to say the results were over whelming with over 150 responses in less than 12 hours. Here are a few of the responses. One of our members related:
“Oh it was hard…….doctors didn’t believe me….I had an op on my hip, which led to nothing, 15yrs approx later. ( maybe more) .diagnosed with m.e & fibromyalgia”
While another commented:
“I was fortunate… My neighbor has fibro and I was experiencing all the same aches,pains, symptoms as her, she urged me to go to her rheumatologist. That’s when I was officially diagnosed. It was a long road prior to that… Going from doctor to doctor, repeated blood work…tests tests and more tests…. All I heard was your fine… There’s nothing wrong. Thank goodness for my neighbor who helped me!!!”
And maybe there are still issues with the medical profession. As one reader shared:
“Even now doctors donot believe in Fibromyalgia or dont know much about it…A very senior doctor told me its another fashionable tag given to arthritis…Mostly I did my research on net. ..Recently i went to a rheumatoloy clinin who agreed it was either fibro or CFS..Its frustratinf when people around you are so ill informed about your suffering and ill ness..”
But there are positive signs as one commenter said:
“I was lucky that I had a good family doc that knew the right specialists to send me to. I think he did his homework actually and when I started to get worse, he sent me to those specialists cuz I only had the waiting time to get in to see the specialist until I had a diagnosis. That was about a month.”
So it seems that while there are signs that it is getting easier to be diagnosed with fibromyalgia but the overall situation is still not great. The aim of this blog is to get your take on the issue. We would like you to answer that very simple question “How easy was it to get diagnosed with Fibromyalgia?”.
You may also want to consider some of the following questions as well:-
Feel free to use the comments box to answer these questions and add any other opinions which you think may be of interest to other people with fibro. If you have any useful links please do include them.