Thinking it’s all in our heads…

Thx for sharing. People who do not have LC do not understand and can be quite unkind.

Thank you for sharing what you are going through . You felt validated when your physician said it’s not in your head … I’m sure that is what I’m searching for … to feel validated. One minute i feel as though I’m turning the corner then the next … feel bad again . I’m lucky to not bed bound now … what’s frustrating what I’m reading they say work around your symptoms pace yourself so you don’t crash … my days are so unpredictable how can i do that ?
I want to scream at times and say please believe me it’s not in my head .
I keep a daily journal of my symptoms… that most troubling is “shakiness” internal tremors now MD wants me to see a Neurologist…
Good luck everyone- hang in, stay strong
I’m so thankful for all the support

I sure can relate to this! 15 months later and still dealing with dizziness and “tightness” in different areas. I’ve seen so many doctors, had many tests (that all come back normal), tried physical therapy and even massages to relieve the tightness. Nothing has gotten me back to feeling like myself before Covid. I am much better than I was last year at this time. And I’m so thankful I’m not worse and I’m able to function. I get so frustrated that I’m not over this yet. And I can’t count the times I’ve wondered if this is all in my head!! I talk to family and friends about it but since they haven’t gone through this-they don’t really understand what I’m trying to say. And it is hard to describe what you’re feeling!! I honestly don’t know where to go from here. So I just take each day one day at at time and pray that time will take care of this.
Hope we all find relief soon!

I know how you feel. I too thought for a while it was in my head, It’s not. The symptoms are real. I keep coming here for my own validation, since most people see you normal or don’t understand. At least my doctor, wife and daughter understand. And having this chat available is great.

I can relate also. All the symptoms I have are basically what I was going through when I was diagnosed with hypothyroidism eight years ago...low energy, hair loss, shortness of breath on exertion, brain fog, etc...etc. the only thing I didn't have with that but have after having covid and two vaccines are inflammation in joints, loss of smell and taste, trouble with my eyes and heat intolerance. Of course I received treatment for the hypothyroidism and get tested on thyroid levels every six months. It shouldn't be a problem except for possible inflammation of the thyroid gland from the general inflammation experienced from the virus and/or vaccines. My primary care physician really hasn't acknowledged long covid and the long covid clinic I went to hasn't done too much. There was only one follow up visit through a phone call a month after my first visit in August 2022. I did get a recommendation for physical therapy which did help build up strength I lost. It is a little hard to get people to believe all these problems are from having covid and/or the vaccines. One friend of mine told me it was "old age". I don't think so. Just because you turn 65, it doesn't mean you fall apart. I had been very strong and active taking care of 33 acres by myself with no problems before covid. Oh well, we know what it is and will just have to hang in there.

I am beginning to be a little surprised that doctors have not "caught on" to the fact that long covid is real. Long covid has many and varied symptoms. I hear of doctors who simply brush off patients' reports, and seemingly do not believe in long covid.

It is time for doctors to study the research, so they can care for people with long covid issues and not turn them away due to their own ignorance.

Long covid is real. Patients deserve better care than what many are receiving.

Try a low histamine diet. If it helps, look into mcas and fins a neurologist familiar with mcas and POTS (not saying you have pots but its possible. Not all neurologists are familiar with it or know how to treat it)

Thank you so much for sharing your suggestions … will try low histamine diet and see if the Neurologist is familiar with this … unfortunately can’t get in for 6 weeks … i see my Primary tomorrow and see what she says … i know she is thinking i need a MRI due to lower legs “ weakness”… what is so frustrating , so many diagnostic tests…but important to make sure no underlying issues, just the red tape trying to get appts in a timely matter as I’m trying to get back to work …but must remind myself I’m doing my best.

This forum is so helpful, …. Appreciate the stories of everyone’s personal journey … suggestions to help each other … We must remain strong and keep fighting … remember you are not alone … We are all warriors in this fight !!

I've had LC since Jan 2020 and the vibration since spring of 2021...sent me to a heart specialist and a neurologist with no results...the tremor is 24/7 but internal only (so far) so the neurologist sent me away...the worst is when your PC ignores your symptoms...

So true!!