Wow. This was very enlightening for me finding this thread. I have had all these symptoms and including periodic lymph node swelling in my armpits and have been to multiple doctors and a neurologist (who told me it was anxiety) but confirmed my mild neuropathy with an EMG and told me he could redo the test in 6-12 months if it gets worse. All of the doctors were aware of the Covid-19 infection proximity to my initial neuropathy symptom onset (2 weeks after infection, the muscle twitching didn't start until about 5 months after) and they pretty much all discounted it being related to covid. Except one Functional medicine practitioner I see thinks it could be related but maybe reactivation of EBV or Lyme. Neurologist initially scoffed at the relation to covid "because both he and his wife had covid" and apparently neither of them had any strange symptoms after. Fucntional medicine practitioner is now going to have me try mild hyperbaric oxygen therapy so I am slightly hopefully optimistic again. At least someone is trying to listen to me and trying to help.
Anyway, I am looking forward to reading any updates from people on here if they have things they tried that helped (I guess it is helpful to hear the things that didn't help as well). And I guess at least I know I am not alone or crazy for making this association.
I’ve had severe muscle spasms in my feet & legs for over 24 months now (have had Covid twice—first bout was severe and where most of my debilitating Long Covid symptoms developed from. Also have had 3 full Covid shots & 2 boosters). So bad that I can’t walk some days when I wake up. It doesn’t occur as often now (was almost nightly for 8 months), but still awful. In fact, one episode snapped a tendon in my left foot & it’s still not healed
@blgilles I think one has to be careful in saying that all long-COVID patients are "like CFS/ME" - this is not the case for many of us. I don't have exertional malaise or blood vessel/heart/lung/gut issues, for example. My exhaustion is caused by electrical disturbance when trying to rest or sleep, which causes small muscle spasms, which in turn results in larger tendon and muscle issues. I am in the neuro cohort, in which most of our issues are caused by central nervous system overactivation/autonomic dysfunction. This group is characterized by electrical stimulation of the CNS, which leads to sensory issues, brain and muscle inflammation, buzzing and tingling sensations caused by neuropathy. It is likely exacerbated by inflammation, but I don't seem to have the vascular issues that would go along with what you're describing. I do think there are two overarching categories of long-COVID - CFS/ME type and neurological types, within which there is the POTS group and the CNS small-fiber neuropathy group.
Thank you for the detailed response though. I think it could help many find relief.
Is there any way to determine this once and for all? I have been given a PD diagnosis by 4 neurologists, and none of them even bothered to investigate other possibilities. Not even after two of them admitting this could be from COVID. I also came across this article about third wave of COVID being PD, and it worries me a lot. Too bad May Clinic is not letting me post the link since I am new.
Wow. This was very enlightening for me finding this thread. I have had all these symptoms and including periodic lymph node swelling in my armpits and have been to multiple doctors and a neurologist (who told me it was anxiety) but confirmed my mild neuropathy with an EMG and told me he could redo the test in 6-12 months if it gets worse. All of the doctors were aware of the Covid-19 infection proximity to my initial neuropathy symptom onset (2 weeks after infection, the muscle twitching didn't start until about 5 months after) and they pretty much all discounted it being related to covid. Except one Functional medicine practitioner I see thinks it could be related but maybe reactivation of EBV or Lyme. Neurologist initially scoffed at the relation to covid "because both he and his wife had covid" and apparently neither of them had any strange symptoms after. Fucntional medicine practitioner is now going to have me try mild hyperbaric oxygen therapy so I am slightly hopefully optimistic again. At least someone is trying to listen to me and trying to help.
Anyway, I am looking forward to reading any updates from people on here if they have things they tried that helped (I guess it is helpful to hear the things that didn't help as well). And I guess at least I know I am not alone or crazy for making this association.
I went to see a functional/integrative med person and they did a barrage of tests on me, and said it's long covid. I am now taking a ton of supplements, and low dose naltrexone. I am about to add Ivermectin to the mix tomorrow. Keeping my fingers crossed. My tremors didn't start until about 5 months after my nov/dec 2019 covid infection. That was the sickest I have ever been in my entire life. It's important we understand that the symptoms will be different for everyone depending on per existing predispositions and injuries. At least that is what I understand about COVID. Not everyone gets neurological issues, and not everyone gets the malaise ... it's individual.
Since doing my own in depth research online I have been eating a low histamine diet and taking supplements. I am also going to be seeing a Functional MD who will carefully study my DNA and other tests and then prescribe the proper supplements and meds to hopefully help me to get better over time. All of this is paid out of pocket but I am willing to try anything at this point!
You might ask your doctor about taking Paxol, a antidepressant, off label,
for your muscle twitching, etc. I take it for similar muscle cramping,
pain, twitching, electric charges, etc., caused by two episodes of guillain
barre. It keeps me comfortable most of the time. And keep walking.
Wow. This was very enlightening for me finding this thread. I have had all these symptoms and including periodic lymph node swelling in my armpits and have been to multiple doctors and a neurologist (who told me it was anxiety) but confirmed my mild neuropathy with an EMG and told me he could redo the test in 6-12 months if it gets worse. All of the doctors were aware of the Covid-19 infection proximity to my initial neuropathy symptom onset (2 weeks after infection, the muscle twitching didn't start until about 5 months after) and they pretty much all discounted it being related to covid. Except one Functional medicine practitioner I see thinks it could be related but maybe reactivation of EBV or Lyme. Neurologist initially scoffed at the relation to covid "because both he and his wife had covid" and apparently neither of them had any strange symptoms after. Fucntional medicine practitioner is now going to have me try mild hyperbaric oxygen therapy so I am slightly hopefully optimistic again. At least someone is trying to listen to me and trying to help.
Anyway, I am looking forward to reading any updates from people on here if they have things they tried that helped (I guess it is helpful to hear the things that didn't help as well). And I guess at least I know I am not alone or crazy for making this association.
Not alone. I am considering doing EBOO. It is a process of cleaning and oxygenating the blood. Dr Volpp in Carlsbad California is the doctor. I find that exercising makes my tremors and fatigue worse. I also have had bouts of depression. Very strange. Stay strong. ❤️
Connect
Connect
Like
Helpful
Hug
Wow. This was very enlightening for me finding this thread. I have had all these symptoms and including periodic lymph node swelling in my armpits and have been to multiple doctors and a neurologist (who told me it was anxiety) but confirmed my mild neuropathy with an EMG and told me he could redo the test in 6-12 months if it gets worse. All of the doctors were aware of the Covid-19 infection proximity to my initial neuropathy symptom onset (2 weeks after infection, the muscle twitching didn't start until about 5 months after) and they pretty much all discounted it being related to covid. Except one Functional medicine practitioner I see thinks it could be related but maybe reactivation of EBV or Lyme. Neurologist initially scoffed at the relation to covid "because both he and his wife had covid" and apparently neither of them had any strange symptoms after. Fucntional medicine practitioner is now going to have me try mild hyperbaric oxygen therapy so I am slightly hopefully optimistic again. At least someone is trying to listen to me and trying to help.
Anyway, I am looking forward to reading any updates from people on here if they have things they tried that helped (I guess it is helpful to hear the things that didn't help as well). And I guess at least I know I am not alone or crazy for making this association.
-
Like -
Helpful -
Hug
1 ReactionCould you please share the specific test names to hopefully allow us to inquire with our doctors. Thanks so much!
One text is HPA-4 profile by Sabre Science inc. 888-490-7300
I’ve had severe muscle spasms in my feet & legs for over 24 months now (have had Covid twice—first bout was severe and where most of my debilitating Long Covid symptoms developed from. Also have had 3 full Covid shots & 2 boosters). So bad that I can’t walk some days when I wake up. It doesn’t occur as often now (was almost nightly for 8 months), but still awful. In fact, one episode snapped a tendon in my left foot & it’s still not healed
-
Like -
Helpful -
Hug
1 Reaction@blgilles I think one has to be careful in saying that all long-COVID patients are "like CFS/ME" - this is not the case for many of us. I don't have exertional malaise or blood vessel/heart/lung/gut issues, for example. My exhaustion is caused by electrical disturbance when trying to rest or sleep, which causes small muscle spasms, which in turn results in larger tendon and muscle issues. I am in the neuro cohort, in which most of our issues are caused by central nervous system overactivation/autonomic dysfunction. This group is characterized by electrical stimulation of the CNS, which leads to sensory issues, brain and muscle inflammation, buzzing and tingling sensations caused by neuropathy. It is likely exacerbated by inflammation, but I don't seem to have the vascular issues that would go along with what you're describing. I do think there are two overarching categories of long-COVID - CFS/ME type and neurological types, within which there is the POTS group and the CNS small-fiber neuropathy group.
Thank you for the detailed response though. I think it could help many find relief.
-
Like -
Helpful -
Hug
7 ReactionsIs there any way to determine this once and for all? I have been given a PD diagnosis by 4 neurologists, and none of them even bothered to investigate other possibilities. Not even after two of them admitting this could be from COVID. I also came across this article about third wave of COVID being PD, and it worries me a lot. Too bad May Clinic is not letting me post the link since I am new.
I went to see a functional/integrative med person and they did a barrage of tests on me, and said it's long covid. I am now taking a ton of supplements, and low dose naltrexone. I am about to add Ivermectin to the mix tomorrow. Keeping my fingers crossed. My tremors didn't start until about 5 months after my nov/dec 2019 covid infection. That was the sickest I have ever been in my entire life. It's important we understand that the symptoms will be different for everyone depending on per existing predispositions and injuries. At least that is what I understand about COVID. Not everyone gets neurological issues, and not everyone gets the malaise ... it's individual.
-
Like -
Helpful -
Hug
1 ReactionHow did this go?
Paxol is addictive.
-
Like -
Helpful -
Hug
1 ReactionNot alone. I am considering doing EBOO. It is a process of cleaning and oxygenating the blood. Dr Volpp in Carlsbad California is the doctor. I find that exercising makes my tremors and fatigue worse. I also have had bouts of depression. Very strange. Stay strong. ❤️
-
Like -
Helpful -
Hug
4 Reactions