Diagnosis of ME/CFS Fibromyalgia POTS – How acceptance could impact your life

Diagnosis of ME/CFS Fibromyalgia POTS
How acceptance could impact your life

So what are your thoughts about the questions I pose in this video?

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KathrynDan NeufferJesse HartiganMaarit SnellmanLynne Recent comment authors

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Chris
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Chris

When I received my diagnosis, I had been experiencing gradually worsening symptoms which I masked with a variety of medication. I would say my symptoms had been present for at least 10 years but I was busy and concerned with caretaking responsibilities. So when I got the diagnosis I was surprised but not all that interested. Then, six months later I experienced a significant increase in symptoms. Then I understood what my diagnosis meant. Then I wanted to end my life. Then I remembered that I have experienced far more challenging situations than fibromyalgia in my life. Ironically, the trauma… Read more »

Mary
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Mary

Firstly, thank you for such a thought provoking video. I was diagnosed with fibromyalgia 12 years ago after a year of going to the doctor. Once I had a diagnosis it was a great relief. I managed to control about 95% of the symptoms with stretching, acupuncture and amitriptyline. I would still get some aches/tiredness when I was stressed, but generally I was much better. However, about a year ago, after about 20 months of extreme personal stress the fm came back but this time the aches/stiffness were much worse. I’m am at the low end of the spectrum –… Read more »

Bill C
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Bill C

Well Dan let me first say that your passion for helping people with this illness is remarkable. I thank you for that. I have had exertional malaise associated with chronic fatigue syndrome for 29 years. I have had to make some major adjustments in my life. I am hoping that I can gain some benefit from your teaching, programs and advice in your book and website. Thanks again for all your hard work and understanding of this crippling illness.

Margaret Schroeder
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It’s been a slow journey for me. First, I went to a fibro support group meeting thinking I’d prove to myself I wasn’t like them. 2 years later, I’m the leader of that support group. I changed my business plan from fitness and yoga instruction (because I just can’t teach it anymore) to blogging. Soon I’ll be launching a podcast where I allow other fibro warriors to tell their stories. Accepting my situation has changed literally everything about my life, but it’s taken a lot of emotional work.

CherylTheBarrell
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CherylTheBarrell

Hi Dan, I like your video. I’m not diagnosed with anything but have been bedridden for over 2 years. At first it was cancer and Lyme. Those are now gone but there’s been neurological damage from one of the co-infections. I think CFS could be my trouble, but I will continue on reading what you provide and eventually I should know. But for many years I thought I have CFS, before cancer and Lyme. Back then it was just leaky gut food allergies and exhaustionx100. Now there’s Neuro stuff too. I’m so very thankful that you want to help others,… Read more »

Chris
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Chris

I had some further thoughts on diagnosis and acceptance. I have reflected on how others around me deal with much more than I do. As well, I have lived through some pretty tragic experiences. Noting the resilience and strength around me (I’m surrounded by inspirational people) and also knowing I’ve survived much worse, I feel I have a much less reactive response to the diagnosis which I am recovering from. There is way worse out there! And I also know the path to recovery! This perspective may not help everyone but it helps me not give in to self pity… Read more »

Lynne
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Lynne

Thanks Dan for a great, thought-provoking video!
For me, having the diagnosis confirmed by specialist service was definitely the start of allowing myself to accept I was actually ill! I was then able to focus on how I could try to improve my symptoms and live with them which led to my discovery of your CFSUnravelled website!
I feel lucky that I was fairly mildly affected and diagnosed within approx 4 years of the strange, increasing symptoms and now perceive myself as recovered.

Maarit Snellman
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Maarit Snellman

Thank you for this video. Wise and true. I have accepeted that I have fibromyalgia and Primary Sjögrens Syndrome among other autoimmune issues. Adjusted my life to meet my needs. My problem is the system in my country: fibromyalgia and cfs are not taken as real illness. There is zero services or social security. I am from Finland. I have lost my sons because I have been undiagnosed with what I am. I have been expected to be like others. And to have a life worth living I must be allowed to be what I am. To be accepeted as… Read more »

Jesse Hartigan
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Jesse Hartigan

Hi Dan – thank you so much for posting this. Love what you’re doing with these reflective videos and the way you’ve expanded the site. So, acceptance — I went through quite a roller-coaster ride with acceptance of the illness (ME / CFS / Fibro and possible EDS, in my case). In the early years, when I was very badly off and knew something was wrong, I made many changes partly because I was terrified at hearing that it was “lifelong” and was unwilling to accept such a label. But when I wasn’t getting much better, after years of working… Read more »

Jesse Hartigan
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Jesse Hartigan

…family. Needless to say, hard things happen in all of our lives, and I don’t blame anyone for this anymore (I used to do this all the time until I realised it was compromising my recovery). What it does make me realise is how important your advocacy & educational work is – we need people to understand this illness and thus develop respect for it and those dealing with it, rather than engaging in blame when mainstream and even complementary interventions don’t produce results. In my mind, it comes down to two terms: compassion, first, and second, seeking to understand… Read more »

Kathryn
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Kathryn

I think this is so helpful. Once you accept it, you let go of resistance, which allows your body and nervous system to relax, which allows your body energy to heal.