Skip to main content
  • A young woman sleeping comfortably and a text overlay Sleep tips that work for me
    Four Simple Rules that Fixed My Sleep, Sort Of
    Aishwarya M, an independent language and literacy educator in India shares her unconventional and imperfect approach to dealing with sleep issues. But first, touch wood! As with anything else with a chronic illness, my sleep is better at the moment. I do not know how long this phase will last. Second, I have Fibromyalgia. I have probably had it for over eight years. I got diagnosed in May 2022. Third, sleep sucks when you have Fibromyalgia1. Lastly, I might have figured out how to sleep…
  • I Work My Way Around Fatigue and Pain Due To Ankylosing Spondylitis And Fibromyalgia
    Prachee Bhosle, 42, who was diagnosed with ankylosing spondylitis and fibromyalgia, two painful rheumatic disorders, shelved her career plans and chose to become a patient leader to raise awareness and advocate for better care and support. She is currently President of Ankylosing Spondylitis Welfare Society.  Please tell us a little bit about yourself, your background? I am a parent to 2 kids, a 14-year-old girl and a 10-year-old boy. Both my kids are homeschooled by me since 2017. After…
  • Fibromyalgia management lived experience
    Fibromyalgia Has Been A Catalyst To Understand What I Truly Value
    Nine years ago, Shruti Singh, 39, was diagnosed with fibromyalgia, an invisible chronic illnesses, that changed her identity from a career woman and passionate outdoor person to a homebound individual. Today, with active rehabilitation she has taken charge of her body once again and now devotes her energy in enlightening others with the debilitating condition. Who am I I am Shruti. Up till a few years ago, my career and my profession defined me. I introduced myself with what I did for a living…
  • Upcoming Webinar: Living Better With Chronic Pain
    In our next webinar in the #LivingBetter series, Swati Agrawal will talk about her experience of living with Fibromyalgia, an invisible illness. She will talk to us about how the chronic pain affects her emotional and psycho-social health, and the lifestyle choices she makes to manage her health. To know more about Swati, read her account here: It Took 2 Years To Get A Diagnosis  Join us on 25th September, 6PM IST, 8:30PM SG time on PatientsEngage page on Facebook. Just follow our page…
  • A family pic of a woman flanked by her teen daughter and son on her right and left and her husband behind her
    Managing Fibromyalgia With Lifestyle Changes
    Anita, 50 took 6 years to finally get a diagnosis of Fibromyalgia. She shares her physical and social challenges in detail as well as the interventions that work for her. Early signs and Symptoms: Constant need to rest, low energy levels, and lack of desire to do anything over time were my first symptoms and continue to be my handicap. I first took notice of it when I was at a mall and could just not focus on anything. I had to stop, sit and put my head down for a few minutes to re-focus.…
  • Aditi who has Fibromyalgia in an outdoor balcony setting in a red printed full sleeved dress
    The Struggle To Find A Cure For An Invisible Disease
    Aditi Gupta, 23 from Gorakhpur, Uttar Pradesh has been in pain for the last 5 years, battling an invisible condition called Fibromyalgia. She still has not found a cure, but has not given up hope – yet. I suffer from a chronic pain illness called Fibromyalgia. It is an invisible and an incurable condition causes widespread muscle pain, migraine, stiffness, fatigue, morning sickness, insomnia, restless legs, depression and several other symptoms. First Symptoms  I was diagnosed about 3.5…
  • Image: Smiling woman wearing a sari looking at the camera tells her fibromyalgia story
    Fibromyalgia is like having Flu Everyday
    It was ad in a newspaper that familiarized Anju Gupta, 54, an Indian settled in Canada, to QiGong, a Chinese system of physical exercises and breathing control that helped keep her fibromyalgia in check. Read how she came out a winner. My problem began soon after I migrated to Canada in 1995. Besides, the pressures of settling in a new country, I had a baby to look after. My son was barely six weeks old. It was very stressful time for me. The only saving grace was that I began to steadily shed…
  • A woman lying in pain due to Chronic Fatigue Syndrome or Fibromyalgia
    What is the difference between Fibromyalgia and Chronic Fatigue Syndrome?
    Chronic Fatigue Syndrome and Fibromyalgia have many overlapping symptoms with chronic pain and fatigue being the most common threads.  Dr. Shital Raval explains the differences between the two conditions and the different diagnostic criteria Chronic Fatigue Syndrome or CFS is a medical condition with an unknown cause, presenting initially with constant or recurring fatigue for 6 months or more. Myalgic encephalitis or ME is the now the internationally accepted term for CFS. Fibromyalgia or…
  • Image: A woman in a black dress appeals to people to raise awareness about fibromyalgia
    Listen to the Voices of People Living with Chronic Invisible Illnesses
    Swati Agrawal, who has Fibromyalgia, appeals to others in the community to start speaking about their invisible illness to raise awareness, remove prejudices and advocate for more equal and friendly world. If you have a story to share, write in to us. You can't see that I am unwell. You can’t tell that I have multiple Chronic Invisible Illnesses by talking to me, or by looking at me. I will tell you the customary "I am fine" to "How are you". This is the story of all spoonies. Our illness is…
  • Image: A woman in a blue dress in a room sharing her experience with Fibromyalgia and Depression
    A Lack of Diagnosis does NOT mean an Absence of Illness
    Swati Neogy is not lazy. She has a condition called Chronic Fatigue Syndrome, which causes extreme fatigue, together with allied problems like body ache, hypertension and sugar level fluctuations and even partial memory loss. She has had to battle misleading perceptions, even by doctors. Finally she now accepts her condition and wishes to spread awareness. Swati, please tell us a bit about your condition  I am a patient of SEID/CFS (Systemic Exertion Intolerance Disease/Chronic Fatigue…
Hello all This is Swati here. Did you know this is Pain Awareness Month? As the month comes to an end, what would you like to share most about having Fibromyalgia? I would like to share that having Fibromyalgia is like being a superhero where you…
In a recent study of more than 1,600 people injured in traffic accidents, researchers discovered that individuals with a certain variant in a stress-controlling gene - FKBP5, were more likely to develop chronic pain. These findings may lead to…
Hello all, This is Spoonie and I will help administrate this group. I am happy to tell you that we are 120 members strong. I hope to see this as a forum where we can all support each other. How about we start with introductions? I look forward to…
No content found

Latest Communities