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A MyFibroTeam Member asked a question 💭
Marietta, GA

First - I cannot believe I am writing that but sadly, it is the reality of my new life...

Let me first preface with the following for those who do not follow me:

1.) I have had every test under the sun done other than a spinal tap
2.) Yes, this includes 4 NCV tests, 3 EMGS (two of which were done by neuromuscular neurologists at Emory's Neuromuscular Clinic and one done by a Neuromuscular Neurologist at Mayo
3.) I have been to the Mayo Clinic - Yes, the one in Rochester with the best… read more

August 22, 2018
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Answer Summary

Members rallied around someone navigating the frightening journey of unexplained neurological symptoms after a severe medication reaction,... Read more

Members rallied around someone navigating the frightening journey of unexplained neurological symptoms after a severe medication reaction, reassuring them that they are not crazy and that fibromyalgia often presents with confusing, anxiety-inducing symptoms that doctors struggle to explain. Several members shared their own experiences with strange sensations like electric shocks, burning, tingling, and metallic tastes, along with practical tools including the Quell device for intercepting pain signals, grounding exercises for anxiety, and the importance of finding a compassionate rheumatologist who truly listens. A recurring theme was the deep emotional toll of grieving a former life while learning to trust medical guidance, set boundaries with testing, and accept that some symptoms may never have clear answers but are valid experiences shared across the fibromyalgia community.

A MyFibroTeam Member

I feel like everyone who has fibro deals with some degree of anxiety. All of my symptoms starts during a bad anxiety period after I had my third child.

I fought, and still do, my anxiety issues. Some days are horrible but others have gotten better. Depending on my sympotoms of the day depending on how bad the anxiety can get. I've cried to my husband many times about how I think I'm crazy and don't understand what's going on. Especially after Dr appts when they find nothing wrong. It makes you feel insane cause nothing seems to be wrong but some something is and you feel it.

Be gentle with yourself. I can say time has helped my nerves some but I do still suffer from anxiety. Some of my sympotoms send me into an absolute panic but I try to breath through those days and wade out those pains and issues.

I'm stilling seeing a Nero and a rheumatologist trying to see if by chance this is something else but as times gone on I'm beginning to accept what's wrong with me and relax my nerves some.

If you ever need to talk I'm here. Gentle hugs and big prayers.

August 22, 2018
A MyFibroTeam Member

Unfortunately there are times that doctors don't know the answers. When that happens, they usually send you to someone else because they don't want to admit it if they don't have the answer. Over the years I have had numerous problems that we never got answers for. I also have many tests come back positive for certain things and then they do more tests and find out that all the previous tests were wrong. I have finally decided that all of the issues that they can't find the answers for are going into the fibro category of my life. I'm not going to worry about them as long as I don't get worse. I can't spend all my time worrying about things that can't be changed. I'm so sorry you are dealing with so many issues without any answers. Hopefully things will settle down for you. Hang in there!

August 22, 2018
A MyFibroTeam Member

Please buy a Quell device . It intercepts the pain signals before they reach the brain. Developed by MIT and Stanford . Google and please get !

August 23, 2018
A MyFibroTeam Member

@A MyFibroTeam Member. Your welcome. Yes I am pretty experienced with this dreadful disease unfortunately. I have had many strange symptoms over the years. Most of the time I figure its fibro but sometimes you have to go to the er to be safe. I have electric shock like pain that comes from no where. I just had thrush for the first time in my life and it lasted a month. My mouth was so raw and burned. I was beginning to think I had that burning mouth disorder but it finally cleared up. Since I have been on my fibro team, I have seen several symptoms that I've had but never put it together with fibro. So I'm still learning even after 30 years. Did you read the medical medium article on Epstein barr and fibro? I hope you start feeling better but just remember you are not alone and definitely not crazy just a fibro sufferer like all of us. Hugs

August 22, 2018
A MyFibroTeam Member

@A MyFibroTeam Member I’m so sorry to hear about your husband. I wonder if that was something that sorta became the tipping point for you. My dad killed him self 10 years ago, the. I had two kids (one they thought might be autistic). I changed jobs 3x bc of layoffs then was put in a position with a workplace bully and actually quit bc she treated me so poorly. I then started with the entire year of anxiety and couldn’t understand why it was happening. For instance, I woke up Christmas morning and Had anxiety. No idea. Should have been a wonderful time watching the kids open gifts but instead I was breathing in a paper bag in the next room. I’ve almost given up on doctors too. The only reason I haven’t is bc it hasn’t even been a year yet with all these symptoms and my understanding is sometimes it can take year for things to show up for more serious conditions. I have an appointment with my
Neurologist at Emory on 9/11. I’m just going to flat out ask her - do I need to be here with you or not. Do you think this is is centralized sensitization? Etc. etc. hugs to you.

August 22, 2018

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