It’s not taken seriously for many reasons. They’ve been doing more and more research on it but it’s very complex. Some of the medical community claims it’s a rheumatological issue like lupus or rheumatoid arthritis. Some claim it’s all in our brains and faulty nervous systems. Some claim it’s a virus like Epstein-Barr.
It’s usually the last thing you’re diagnosed with when they can’t seem to find out what’s wrong through many tests, X-rays, MRIs, etc. The symptoms, the other comorbid illnesses and syndromes, and the ever-changing way it affects each individual make it difficult to treat and deal with. They try all sorts of drugs and therapies but nothing fixes it forever.
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The symptoms of exhaustion, fatigue, pain aren’t something someone can see on the outside. We can get dressed and go somewhere and smile and be okay for a short time and so people think we’re just fine and that we’re not as sick as we say. They don’t know how hard it was to do that thing for a bit or how much it took out of us to do it.
We can do something “normal” one day and then spend a week in bed, exhausted and in pain. Depression and anxiety are common with fibro because it works with the same part of the brain and chemicals. It is exacerbated by stress and physical activity and we’re often told we aren’t trying hard enough, to push through it.
No one can empathize and so that adds to the stress and difficulties because we’re fighting this and no one believes what it is like for us. This is a big problem because we’re so sick we depend on others and sometimes can’t work and function like everyone wants us to, so we’re labeled as lazy or crazy.
I’ve had to go on medical leave twice. The last time was the worst. I could barely function for over a year. I had to move back in with my parents after raising my own family and teaching for 20 years. I was treated like I was a burden, that I didn’t try hard enough, and that I needed to try all these things that others had heard about. It’s different for each one of us, so what works for one won’t work for another.
Depression and anxiety add this other dimension to it and some would say the whole thing was just a mental disorder and that’s wrong. We’re battling lots of things at once. It’s true that a lot of us start unraveling mentally when we are so sick and especially when we aren’t treated with respect to knowing what our own reality is, and it becomes very isolating and scary.
It’s easy to lose hope with this illness and it’s very hard to get the meds and everything right, lots of appointments, and trial and error. It’s very hard to get on disability or to figure out how to afford all the medical bills and be too sick to work. Over 50% of people with fibromyalgia will try or will commit suicide. There needs to be more understanding out there, support. No one would wish this syndrome on anyone.
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