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Which Fibromyalgia Symptom Surprised You The Most?

MyFibroTeam asked a question πŸ’­
San Francisco, CA
August 22, 2024
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Answer Summary

Members shared a wide range of surprising symptoms beyond the expected pain and fatigue, with itching (especially scalp), costochondritis,... Read more

Members shared a wide range of surprising symptoms beyond the expected pain and fatigue, with itching (especially scalp), costochondritis, restless legs, and severe brain fog emerging as some of the most unexpected. Several members described how fibromyalgia affects daily life in startling ways, including difficulty swallowing, extreme sensitivity to smells and chemicals, unpredictable symptom flares, and the emotional toll of feeling dismissed by doctors or loved ones who don't understand the disease. A recurring theme was the frustration of living with an invisible, misunderstood condition that impacts memory, mobility, relationships, and independence, while many offered solidarity and encouragement to keep fighting and advocating for themselves.

A MyFibroTeam Member

Everybody's answers explain how I feel about fibromyalgia. Mood swings, stinging debilitating pain, out of nowhere fatigue, speech inconsistencies, having to stay on schedule to keep flare-ups down, and constantly reminding people how fibromyalgia affects me from moment to moment. This group keeps me encouraged and knowing I'm not crazy and I'm not alone.

August 25, 2024
A MyFibroTeam Member

What has surprised me most is the unbelievable fatigue that goes with Fibro. Having RA, I already deal with joint pain, but the fatigue is almost too much to bear.

August 22, 2024
A MyFibroTeam Member

I have lost hope in all Fibromyalgia meds. I was on Lyrica for 4yrs. At 2yrs I started waking up with back pain. By 4yrs, it felt like someone was beating me with a baseball bat. I read the huge flyer that comes with the med- and found out, in some people, it can cause bone pain. It took me MONTHS to get off it.
I tried Cymbalta. In the first 4 mos. I thought I found a MIRACLE med. For 3 weeks I felt 10yrs younger. I was happy & had great energy! And then it stopped. Just stopped working at all. My doctor doubled my does to 120mg. I WOULD NOT (personally) RECCOMMEND THIS MED to ANYBODY. I spent half a year, slowly & safely getting off of it. It messed up my BRAIN- and even a year+ a half after being OFF of it, I still don't think my own hormones have corrected themselves. I call it the Poison Pill, that's how much it scared & affected me.
So I am back on oxycodone. It's not meant for fibromyalgia, but it helps me. And my brain, my INTUITION are returning to my NORMAL self.
I am tired of being a test subject for 'the newest med'...I have lost respect for medical "professionals". So I live with the ups & downs, missing out on my life and friends who can't understand why I am always sick. πŸ˜” FIBROMYALGIA IS A LONELY, MISUNDERSTOOD ILLNESS.

August 22, 2024 (edited)
A MyFibroTeam Member

The over all exhaustion. No energy

August 22, 2024
A MyFibroTeam Member

After reading so many of your stories.Wonderful strong warriors are the theme for everyone who are suffering from Fibro! We have to deal with so much! Alot of us have the same symptoms while some have different symptoms. All and All we are all suffering from the same insidious disease. It is amazing to me that there are not greater strides to help us live better more pain-free lives. I think the powers who be feel there are more diseases out there to be cured first! Meanwhile we all have to keep plugging along the best we can!! Keep Strong!! God Bless us everyone!

October 29, 2024

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