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Real members of MyFibroTeam 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 MyFibroTeam Member asked a question 💭
Sumter, SC

So I got diagnosed a week ago, I get numbness and tingly feelings in left cheek and sometimes down my neck off and on, I get upper arm pains which can get very sharp but don't last long, and burning in my left lower legs, I also have light sensitivity they get blurry in any light and just feel tired! And I get weird ice pick headaches on and off! I'm so scared I have no one I have 3 young children and my husband works 12 hour shifts and doesn't care much, and no family that cares or that I speak… read more

January 18, 2019
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Answer Summary

Members rallied around someone newly diagnosed with fibromyalgia who described frightening symptoms including facial numbness, burning... Read more

Members rallied around someone newly diagnosed with fibromyalgia who described frightening symptoms including facial numbness, burning sensations, stabbing headaches, and jolting awake at night, reassuring them that these strange and often indescribable experiences are common parts of the condition and not signs of imminent danger. Several members shared practical strategies that have helped them cope, including seeing a neurologist for persistent symptoms, using muscle relaxants or sleep aids like Rivotril, Valium, or melatonin to improve rest, and practicing deep breathing to manage panic and fear. A recurring theme was the importance of self-care without guilt, building a support network within the community, and communicating openly with family members who may also be scared and struggling to understand the unpredictable nature of fibromyalgia.

A MyFibroTeam Member

Don't worry about all the weird things you get. I have had fibromyalgia for 47 years and so often have thought I was going to die.
I get that weird to going on one side of my head and then it moves to the other side. I get burning in lower leg, in groin badly and under my feet. Oh dear I could go on and on just ask what really concerns you and I will answer. I am still going fairly strong so please feel safe. You don't want to cause panic attacks. When you get scared just concentrate on deep breathing and it will feel better. Take each day as a challenge. Xx

January 18, 2019
A MyFibroTeam Member

I found that when I have a flare up and take a valium and night and in morning it curbs it..

January 22, 2019
A MyFibroTeam Member

Katie Moore sleep at night is important. If you don't sleep well do ask for sleeping pills. A muscle relaxant like Rivitril may help. Don't worry about becoming addicted - so what so long as it helps you. Remember your husband is also scared and worried. Try not to upset him more.
When I was young and diagnosed with it and high SS I had a son of 13 who had to wear a spinal brace for 2 years and 2 foster girls who had suffered abuse and had to see psychologists every week, wet their beds and needed extra school lessons. The one had bipolar and drove me nuts but with God's help I survived.

January 21, 2019
A MyFibroTeam Member

I feel the same like you, the funny thing is the burning for me is in both tights and both harms. Well forget the weird feelings they are undescribeable, many times I think is the last day and no one understand what I talking about because sometimes I cannot describe what I am feeling. I am at stage now where I am feeling embarrass to tell others how I am feeling. I think I have all the thousand symptoms of fibro. PEACE AND LOVE to my fibro warriors.

January 19, 2019
A MyFibroTeam Member

Trust me, I have weird things, too. And I battle the fears as well. You are not alone.

January 18, 2019

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