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New member
Jan 24, 2017

I have been struggling with what I have for more than 6 years now, I have seen countless numbers of doctors who failed to diagnose my condition (Sleep specialists, Neurologists, Rheumatologists...etc).

I experience immense amounts of muscle pain, sleep deprivation, depleted energy, poor concentration and memory, appetite loss and minor stomach contractions.

I would be fine for few days then without warning it would hit me in the morning when I wake up. I feel complete devastation and the pain along with all other symptoms would keep increasing until I sleep again for really long hours (The severity of the pain varies, sometimes it gets localized in my cheeks, inner thighs and lower back while other it is so intense and all over my body and only go away with prescribed pain killers). The symptoms can last days If I don't break the cycle by sleeping well.

I have been on seizure meds as my neurologist thought that i might have "tonic/stiff sleep seizures" but all the Video-EEGs came back negative along with the MRI and seizures do not explain the pain. In his notes he wrote that I might have fibromyalgia.

However, my pain is constant...It does not increase when I press (I don't have tender or trigger points). I also don't experience any muscle twitches or weakness.

Could anyone relate please?

-Thank you!
Hi Madison,

All I can say is that Fibromyalgia presents itself in many ways.
You don't necessarily have to have pain when pushed on some spots of your body. Although It is one of the diagnostic criteria they use, but not everyone will have that at time of examination.

They need to do neurologist testing, MRIs etc.
And if that is negative and u present with symptoms for approx 6 months or so then they can diagnose u.

A lot of times the pain and fatigue of fibro doesn't get relieved by a good nights sleep.
That is one of the hallmark.
We can never get a refreshing sleep and feel great lol. The pain can be on both sides of the body in all different areas, like the neck,back,legs,hips, hands and the feet.

The fatigue can be severe or moderate

If we have a " flare" as they call it. It can last several days,. There is increased pain in different parts of the body, severe fatigue maybe, loss of appetite. And unable to perform daily activities, migraines.

But everyone is unique, but they are finding that IBS, heavy periods, urrinary problems like bladder spasms and interstitial cystitis might also present sometimes with fibro
And foot and skin problems.

So it's not so easy to diagnose
But hopefully u can find the right doctor thst will evaluate u and help u find relief 😀

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