Community Voices

I need some ideas about how to help with the pain, is there anything I can do at home that can help? Any tricks of the trade so to speak?

I’ve been in so much pain for years and issues with my other illnesses (I have POTS, fibromyalgia and severe gluten intolerance) and in the past 5 years it’s progressively going from bad to unbearable. I can’t work right now it’s so bad and where I used a wheelchair for things like shopping and days out before, I’m using it all the time. I just don’t know what to do. #ChronicPain #hopeless

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Community Voices

Kind words and healing thoughts needed

#Fibromyalgia #ChronicPain #Depression
So I got to see the rheumatologist again, was so hopeful as she had really seemed great in the first appointment and was really understanding that I had tried every pain medication that was readily prescribed. Now I’m devastated and have been crying all day…..
I had wanted to try low dose naltrexone as it’s basically the only thing I haven’t tried and I’ve heard it can really help. In Canada health care is separate for each province and LDN is being used in all but 2 provinces (one of which is the province I’m in). The rheumatologist told me I’ve tried everything that is normally prescribed for fibromyalgia pain and she is not willing to try LDN as she would be the first Dr in the province to prescribe it and that causes a lot of paperwork and explanations to provincial health. I’m devastated, I’m in so much pain I can’t even get out of bed, dress myself or do any daily care unaided. I’m losing hope and I don’t know what to do next……

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Community Voices

I’m so done…physically and emotionally, that I feel like I can’t even breathe #Fibromyalgia #PosturalOrthostaticTachycardiaSyndrome #sjogren ’s

Help, what does everyone do when not only have you hit the invisible wall of pain, fatigue, emotional and physical sensitivity….but you’ve gone around it and kept going for a few miles after it. I went out for coffee with a friend, now I’m in so much pain, exhaustion and also emotionally I’m completely done.

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Community Voices

As an avid photographer I just thought I’d share a picture with everyone…..

<p>As an avid photographer I just thought I’d share a picture with everyone…..</p>
Community Voices

Today is a GOOD day

Just thought I’d share some happy news, even though my provincial health insurance wouldn’t fund it since I don’t have a “spinal injury” I raised enough for a rigid, lightweight wheelchair.

Community Voices

Hi everyone!

So I discovered the app a few months ago but I haven’t posted anything yet. I finally, after 30 years of unexplained symptoms and doctors (and my mum) not believing me, got to see a doctor who believed me, did the right tests, gave me answers and started me on some appropriate medication. I’ve been diagnosed with POTS and fibromyalgia. Since I was 13 my mum had been trying to convince me it was all in my head. She sent me to psychiatrist after psychiatrist, had me committed for “my own safety” twice and had me convinced that being on an antidepressant and 3 antipsychotics was the only way I can function. Mum was also emotionally and psychologically abusive and the Dr I saw thinks I should see someone as I am probably suffering from PTSD from trauma at home and medical trauma. My beautiful, amazing, life saving wife who is helping me to see how worthwhile and strong I am helped me come of the psych meds safely and I’ve never felt better emotionally. The pain, exhaustion and oh so lovely fainting spells have made it so I need a wheelchair to have any meaningful functionality. It felt like a huge blow but my wonderful girl has shown me how it can be a blessing and get me back to being active like I used to be. I feel like I’m stronger emotionally and ready to connect with others who understand so I don’t feel so isolated. Sorry for such a long post…’s great to be here

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