Posted 3/23/2013 1:32 PM (GMT -6)
Wow! You've been to some excellent hospitals, too. I think, if I were you, I'd see a neurologist next. If they say it's fibro then you will most likely have to accept the diagnosis and then move forward in finding ways to help yourself live with your symptoms and we can help you there.
I'm sorry to hear about the mesh problems. I have a huge hernia but it was not repaired because mesh was needed and my surgeon didn't want to use it because of problems it can cause. This was at the Cleveland Clinic, too, but it also was around 20 years ago. But, if you had a reaction to the mesh, that could kick in fibro possibly. It seems like trauma affects most of us before fibro hits. The only thing I wonder about is the involuntary body movements...unless these are nervous tics. Did you get a chance to read Fibro 101 yet? This could help you see if you think fibro is at issue here, like the doctors are saying. You know your body better than anyone and fibro does have a lot of weird symptoms. So do read that thread. It might help you ,ore than you realize.
I hate it when doctors say it's all in our heads. Yes, people with fibro have heard that one before. Now, if you are suffering with anxiety because of what is happening, the anxiety can give you crazy symptoms, too. That happened to me when I suffered with anxiety and spent a lot of time thinking about how I was feeling. I wasn't living my life. I was focusing on only one thing...my health issues. Once I came to grips with my illness and didn't let the fear run my life, I've been much better.
I hope these suggestions can help you. It's a frightening time you are experiencing and many of us have gone through that. You have been given a diagnosis but it sounds like you are not sure if you believe it or not. You have covered most bases and the neurologist would be about the last thing I can think of. If they think it's fibro too, then you need to accept the diagnosis and we can help you move forward with your life, as I said previously. I've had fibro for 26 years and have had a full and enjoyable life in spite of this illness. We have good ideas on this forum and great members, too.
Now, I'm going to ask you a favor. Please use paragraphs and punctuation when you post. It's very difficult to read your posts and I get lost. I also have to stop and reread parts to figure out where a period would be and a new sentence would start. I think you would get better responses that way too. So thank you in advance!
Do let us know what you end up doing because we do care about you.
Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7