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Real members of MyChronicPainTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyChronicPainTeam Member asked a question 💭
Halifax, NS

I was diagnosed in 2006 and had micro vascular surgery in 2009. Unfortunately the surgery was not successful.I suffer daily with chronic pain and can no longer work. It would be nice to speak to connect with someone who has and is dealing with this horrific disease. I am now in my 11th year and it's really starting to hit me now that my life will never be the same as it was. I'm not looking for sympathy or pity just someone who I can relate to. Thank you.

October 29, 2017
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Answer Summary

Members deeply connected over the isolating experience of living with trigeminal neuralgia, with several sharing that they also suffer from... Read more

Members deeply connected over the isolating experience of living with trigeminal neuralgia, with several sharing that they also suffer from this rare, severe facial pain condition, often alongside other diagnoses like multiple sclerosis, fibromyalgia, and migraines. Several members described the loneliness of being misunderstood or judged by family who cannot see their pain, the toll of failed treatments including botox, nerve blocks, and brain surgery, and the added difficulty of accessing pain relief during the opioid crisis. A recurring theme was the value of finding community with others who truly understand, with members exchanging encouragement, potential treatment leads such as a Dallas specialist performing nerve-clipping procedures, and the shared practice of taking life one day at a time while seeking support through humor, meditation, and connection.

A MyChronicPainTeam Member

Hi Patti - thank you for your response. I do not have fibro. I have trigeminal neuralgia - a brain disease that causes me constant chronic pain. This is a rare disease. Hugs back to you.

October 30, 2017
A MyChronicPainTeam Member

Fibro is a deseae of it's own! There are no set problems, the Dr. has a difficult time diagnosing it! It takes a lot of tests before you are told that it is fibro! I feel sorry for you! Take good care of yourself, your the only one that can!! Hugs to you!

October 29, 2017
A MyChronicPainTeam Member

Thanks for your response. It's a brain disease which causes chronic pain.

October 29, 2017
A MyChronicPainTeam Member

Me plus occipital plus Migraines

January 28, 2021
A MyChronicPainTeam Member

Yes , having Multiple Sclerosis’s for 15 years I have a lot of Chronic pain, including Fibromyalgia, Neuropathy and trigeminal neuralgia . I’ve lost three teeth and yes I’m treated horrible at times. People that don’t get it is basically family and people that are close to me, so yes I feel very lonely at times I can’t sleep and because of this opioid crisis we are all suffering. I wish I had more support, but I don’t and I feel like a criminal at times from others. Is there someone who lives in Phoenix Arizona area that has similar problems that could help me ? I would love more feedback about how your feeling too and how your treated. Thank you !!

July 29, 2019

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