Hello Group! I just found you today and I am so happy to have found you and to have found a group that might understand what I have been living with... because no one else does.
I haven't been diagnosed yet, but I'm working on that. I have an appointment with my doc in a few weeks. Here's my story...
My parents were abusive. I know many folks with fibro have some sort of trauma (though not all of them do). I admin for a large online support group for people who were abused by their parents - so many of them have fibro , I've noticed. My childhood was full of trauma. When I hit puberty, things got much worse than it had been before. My grandparents, my only consistent safe harbor and they also kept my insane mother in check, died. My step-father (who raised me) had always been sadistic and abusive. He lived to torture me. But, when I hit puberty, my sick mother started seeing me as sexual competition and started joining in on the torture as well.
I'm not sure if the pain started when I was 8th grade or if it was when I was in high school, but I was young. I became tired and it was hard to stay up for 12 hours. It started to hurt to do things that are normal for kids that age... walking started hurting, running started hurting, sitting on the ground started hurting... All I wanted to do was lay in bed and sleep or read books. I wanted to be in the dark a lot. I moved into our basement to be in the dark and away from people, I spent all my free time in bed... it was the only place I felt okay at least some of the time.
Over the years, I have gathered up the strength to talk (and get invalidated by) yet another doc about my various symptoms. When I was in my teens and 20s, they would shrug me off like I was making it up. In recent years, they have told me "depression causes pain and you have depression so..... get on SSRI's and get a therapist." Well, SSRI's make me horrible sick (I have taken 8 different ones - each a different kind of nightmare) and I have a therapist, so....
Recently my anxiety and brain fog have been even worst than ever. I've long thought I had ADHD. My symptoms mostly fit. But, I went to my psychiatrist, because I've been feeling like I'm screaming on the inside for over a year now and I feel like I'm going to start screaming and never stop.... I talked to him about meds. He prescribed me Gabapentin to see if it would help with my anxiety.
Gabapentin changed my life. The pain is mostly gone. The brain fog is almost completely gone. I no longer believe I have ADHD. I have zero ADHD symptoms since I started the Gabapentin... I think it was fibro all along. Who knew? The fatigue is gone. My anxiety is gone... well, mostly. I'm singing on the inside, not screaming, because after 25 years of constant pain, I am still in pain, but it is nothing compared to what it was. I am not at all religious, but I still think of this as a miracle.
I have a friend who is a PhD researcher on pain and fibro is one of her main areas of research and expertise. She told me about fibro and that given my symptoms and that Gabapentin worked for me in this way, that I most likely have fibro. So, I get to Googling. Ninjas on a bicyle!! It all sounds so vamilar.... the brain fog, the horrible fatigue, the flares, the migraines, the constant pain, the skin pain, the stupid ridges in my finger nails, the horrible anxiety and depression and the sensitivity to light and cold and sounds and just freaking everything. I've long known my nervous system was just completely insane... now I realize this is manifesting as fibro.
I have an appointment with my doc at the end of the month. I cannot wait to tell him the miraculous unintended consequences of his prescribing me Gabapentin and I'm going to hopefully get a fibro diagnosis. I may need to be referred to a rheumatologist to get this all sorted out. Whatever. I will do it. I want a treatment plan and I want a doctor to know what the heck is wrong with me incase Gabapentin stops working for me, because I cannot go back to what my life was before... I hope I never have to. I have two kids to raise and I am a much better mom when I am not dealing with 24/7 pain that invades my very being and won't even allow me to think....
Right now, I'm enjoying discovering my body without pain. I have hunger and fullness signals!!! Holy cow! I haven't felt those in years. I was in too much pain. Also, now that most of the pain is gone, I am realizing my asthma was much worse than I thought... I can feel my wheezes now and I am using my inhaler more. Oh well, at least I am taking care of my asthma better now. I feel my tiredness before I'm almost passed out on the floor. I'm registering all these body signals that I could hardly even hear a whisper of before, because of the all encompassing pain.
It's not perfect. I still have a lot of pain and I get muscle pain a lot easier than most people do, but it's a much lighter burden than it was.