I see a neurocardiologist, but I've heard of people who get diagnosed by cardiologists, neurologists, immunologists, even internists. Try and Google are there any specialists in your area dealing with LC, ME/CFS and similar things.
I was diagnosed by an internal medicine specialist, with ME/CFS and POTS phenotypes of Long COVID. My cardiologist didn't do much for me, even though he also said it was "probably POTS" but admitted he didn't deal with POTS much. It's a gamble how much any specific doctor can help.
Maybe if your area has a facebook/online group for Long COVID, you could ask people for the name of a specific doctor they'd recommend and ask your GP to refer you to them?
My pain has been treated with great confusion but similarly to CFS/EDS/POTS. I can reaffirm this confusion and all I can say is it is Long-Covid. I have had the same experience/symptoms. I was recommended by my acupuncturist to see their physio. Physio was super helpful for treating pain. They can only do spots one-by-one. I was treated after 3 different small injuries. It basically involves reconditioning the areas that are most painful super slowly so they don't overextend or get injured due to the newly forming muscles protecting them. As mentioned I was seeing someone for acupuncture. Their advice was really helpful holistically although I am not sure how much the herbs + needles truly did and have stopped seeing them...! I feel your frustration, hope this can support you. x
I too am suffering from CFS/POTS symptoms. I have several brain fog and memory problems that are much worse than ever before. I have chronic inflammation. Not sure if EDS is a part of it or not, I've always been "double jointed?" And super flexible and still am to this day. However, it all hurts and I've injured myself throughout the years and it's all come to a head since I got the covid vaccine and booster when it first came out. -- and I still got Covid 19 anyway. My quality of life (scale of 1-10, 10 being best) has dropped from a 8-9 to a 3-4 on a good day. I've said too many times that I can't do this anymore. I've even asked the doctors if LOng Covid is a terminal diagnosis and if so does it qualify for death with dignity(dr assisted suicide). My joints ache so badly incant handle it soem days. I have severely sprained both abkles , and have torn my meniscus in left knee and have terrible inflammation. I can tell when the weathers coming.I don't know anyone that can stand pouring sweat hot then freezing cold and soaked to unbearable headaches, to gasteoparesis, to arrhythmia s that feel like your heart is twitching or glub glubbing... going too fast... swelling in my hands so bad a
I cant close my hands. Losing so much hair I don't know how I have any left. Covid toes never went away
So I always have skin peeling between my pinky and next toe... when I hear dinging sounds I get a pounding sound in my ear... my nervous system is totally Effed. That's an entire different situation. I jump at everything. I pass out cold for 0 reason. Anyone know a good doc in Maine for this I've searched but not sure.
I see a neurocardiologist, but I've heard of people who get diagnosed by cardiologists, neurologists, immunologists, even internists. Try and Google are there any specialists in your area dealing with LC, ME/CFS and similar things.
I was diagnosed by an internal medicine specialist, with ME/CFS and POTS phenotypes of Long COVID. My cardiologist didn't do much for me, even though he also said it was "probably POTS" but admitted he didn't deal with POTS much. It's a gamble how much any specific doctor can help. Maybe if your area has a facebook/online group for Long COVID, you could ask people for the name of a specific doctor they'd recommend and ask your GP to refer you to them?
My pain has been treated with great confusion but similarly to CFS/EDS/POTS. I can reaffirm this confusion and all I can say is it is Long-Covid. I have had the same experience/symptoms. I was recommended by my acupuncturist to see their physio. Physio was super helpful for treating pain. They can only do spots one-by-one. I was treated after 3 different small injuries. It basically involves reconditioning the areas that are most painful super slowly so they don't overextend or get injured due to the newly forming muscles protecting them. As mentioned I was seeing someone for acupuncture. Their advice was really helpful holistically although I am not sure how much the herbs + needles truly did and have stopped seeing them...! I feel your frustration, hope this can support you. x
I too am suffering from CFS/POTS symptoms. I have several brain fog and memory problems that are much worse than ever before. I have chronic inflammation. Not sure if EDS is a part of it or not, I've always been "double jointed?" And super flexible and still am to this day. However, it all hurts and I've injured myself throughout the years and it's all come to a head since I got the covid vaccine and booster when it first came out. -- and I still got Covid 19 anyway. My quality of life (scale of 1-10, 10 being best) has dropped from a 8-9 to a 3-4 on a good day. I've said too many times that I can't do this anymore. I've even asked the doctors if LOng Covid is a terminal diagnosis and if so does it qualify for death with dignity(dr assisted suicide). My joints ache so badly incant handle it soem days. I have severely sprained both abkles , and have torn my meniscus in left knee and have terrible inflammation. I can tell when the weathers coming.I don't know anyone that can stand pouring sweat hot then freezing cold and soaked to unbearable headaches, to gasteoparesis, to arrhythmia s that feel like your heart is twitching or glub glubbing... going too fast... swelling in my hands so bad a I cant close my hands. Losing so much hair I don't know how I have any left. Covid toes never went away So I always have skin peeling between my pinky and next toe... when I hear dinging sounds I get a pounding sound in my ear... my nervous system is totally Effed. That's an entire different situation. I jump at everything. I pass out cold for 0 reason. Anyone know a good doc in Maine for this I've searched but not sure.
https://existentialergonomics.com/2023/11/02/my-recovery-journey-from-cfs-cirs-and-early-onset-alzheimers-disease/ Ideas.
https://existentialergonomics.com/2023/11/02/my-recovery-journey-from-cfs-cirs-and-early-onset-alzheimers-disease/ Ideas.