I have just read an article, what do you think of this? good news?
@A MyFibroTeam Member I get all the same sensations you do. So do others diagnosed with “fibromyalgia” the question is - do you have more muscular pain or odd nerve pain/sensations. There is something called CSS which fibro rolls up under. It’s just an overactive hypersensitive CNS response and your brain basically gets this way from being in a constant fight or flight mode. I’ve seen many neurologist with no real answers other than with what Mayo came up with “CSS.” I was also diagnosed with fibro based off of my test but like I mentioned, the nurse pressed hard and said tell me if you feel any pain. So yes, I felt pain from where she pushed but I don’t wake up feeling like I finished a heavy work out. Alll my issues are with my nerves. There’s a lot of people on her that take gabapentin which is for nerve pain so I’d assume there are more people than you realize with odd nerve sensations. Read through the QA. People talk about feeling like they have hot water poured over them, burning skin, swollen limbs, vibrating/humming/buzzing, etc. maybe we are all being diagnosed with fibro even if it’s not classic muscular fibro bc so many doctors now classify fibro as an overactive nerve syndrome. The nerves control everything. So if our nervous system is thrown off, we’re going to feel all sorts of crazy stuff. Try to be calm about it. I get scared too but the reality is, if it’s just fibro or something more serious, even fatal, what can you do about it? You can’t change it if it’s very serious. You can only live with it and try and survive as long as possible if it’s terminal. I only say that bc I have weakness in my left arm only, weird sensations (like buzzing), and now my tongue tingles and I taste metal in my mouth almost all day long. Is it something more serious that can’t be detected yet? Maybe. So far doctors say it’s just CSS/fibro. If it is more serious, it’s going to rear it’s ugly head eventually and be detected but I can’t stop living until then. Think of all the time wasted worrying when nothing has been diagnosed yet. I have wasted 8 months freaking out that I might have something as scary as ALS but the thing is, even if it comes down to that, what can I do? I can’t change it. All I can do is put my faith in a higher power that whatever is going on with me is happening for a reason. Whether that be to bring me closer to God, test my faith or make me appreciate all the amazing beautiful things we have surrounding us. We are all going to die. You could go out tomorrow and get hit by a bus or murdered. We can’t control when it’s our time. Is it sad, yes. But so far the doctors haven’t found anything other than fibro. So we have to take some comfort in that even if it’s hard. And yes, it is hard as hell when your body feels like it’s failing but the doctors go, “we can’t find anything.” Hugs to you.
I think that when we learn something we need to share it with our doctors.
We all know that people think this is all in our head. They won't change their minds on the subject if articles like this one aren't shared. I don't know of a single doctor who is sufficiently informed about fibromyalgia because the topic hasn't been researched to get the degree we need it to be.
Share your story with everyone you know. We need to be our own advocates in this area.
@A MyFibroTeam Member,thank you.yeah I do have the muscle pains and aches pins n needles,hot and cold all the classic fibro symptoms really as well as the weakness in both my arms and our strange sensations.im trying my best not to lety mind run away with me now and just go with it,started my medication 3 days ago so we shall see if that helps any.💓💓
@A MyFibroTeam Member, we know more because we have more time to research our health problems than Dr's do on one subject, Fibromyalgia and Chronic fatigue.
@A MyFibroTeam Member keep me posted on the meds. I decided to stop taking until I get over this cold to make sure I’m not having a side effect from the mendicant. I will say - and maybe it was a fluke - but the meds were making my have less sensations. I think!