This is very interesting, what was the name of the oral steroid if you don't mind me asking, I would like to share this with my local GP and get her opinion and hopefully some help 4 years I can't take anymore.
Hi Guys I'm new also, I'm reaching out in distress as I have been suffering internal head tremors since 3rd Pfizer vac and Also mild case of COVID back in 2021 it started when falling asleep and waking up, these days I fall asleep ok but wake around 2:30 am to use the bathroom it's upon returning to sleep I tremor inside me head and I can get back to sleep, I have had an MRI to rule out MS etc, I live in Sydney Australia and I'm 47, male, there Times I don't tremor but very rarely, I've been taking magnesium and a natural sleeping pill when needed, I can't get help anywhere here, there just telling me I have anxiety, I was a great sleeper and could easily sleep for an hour in the afternoon, these days an afternoon nap is lucky to last ten minutes then the tremors start and I wake, I'm am at wits end to be honest and would appreciate any help. Kind regards Dan
Gratefully, I was able to visit Mayo Clinic in-person and participate in their Post-Covid Care Clinic's program for patients impacted by Long-Covid or Post-Covid issues. After spending a week their and moving thru a series of tests, etc., their team was able to properly diagnose what was happening with me and then I went thru their virtual program and they worked with my local PCP on a treatment plan that included the following pieces as well as working with a local professional on Cognitive Behavioral Therapy.
My main symptoms were the muscle tremors, overall chest pain, radiating nerve pain, overall CNS and ANS dysfunction (rapid heart rate, GI issues, etc.), overall fatigue, and difficulty with sleeping. For the pain management and sleep disruption, my PCP started me on a low dose (10mg) of Amitriptyline and a regimen of Low Dose Naltrexone (LDN) with the hopes of resetting my central and autonomic nervous systems - I've been increasing dosage from 1mg to 4mg presently (increasing 1mg every 3 months) and my pain is much improved, I am sleeping well again, and I've had nervous system functioning (heart rate, tremors, muscle spasms, GI issues) almost restored to normal. LDN in higher doses is given to opioid overdose patients with the hopes of resetting their CNS and helping the body to naturally produce endorphins.
I hope you find this helpful and please reach out with any questions, Steve
Hi there, how are you now? I just wanted to encourage you by saying ‘you’re not alone’. What you have experienced sounds very similar to myself, right down to the ‘ataxic gait’.
Hang in there 😊
Please, I beg everyone's forgiveness for my frustration in this post, but I am willing to say that I am NOT alone and some of you share my frustrations.
I really appreciate you writing as your post has spurred me to share some of my experiences in hopes of helping others and in the spirit of sharing ideas and possible solutions.
I am experiencing a very similar situation; I am also in my 50s and was healthy with a kicking immune system until the biological weapon (COVID) hit me in January.
Incidentally, I got this from a lousy long term care facility that had an outbreak in which they neglected to say anything about. I visited briefly to bring my spouse supplies while they were regaining strength from a hospital stay. Had we known, the spouse would have come directly home and not gone to the facility where they didn't give any of the rehabilitation strengthening exercises they billed Medicare for because of their "lockdown".
Yes, I used a mask. Yes, I hand sanitized after stepping out of the room and once again after getting into my truck - I wiped down my hands, my keys, my phone, AND the steering wheel. So much for preventative techniques and oh, how wonderfully well those masks we were forced to wear work. Hah! More lies and deception.
I used to walk or hike 2 miles per day on 4-6 days weekly. Now I struggle to walk 1/4 mile once a week, if that. There are weeks I can't even do that, like this week. I am now walking with a cane. I can walk into the next room and back and my heart rate jumps up to 150 and I am panting like I ran. I have nearly all the "typical" symptoms listed for long COVID except loss of taste/smell. I also experience feeling ethereal.
I am now in jeopardy of losing my job and income as of July because I haven't been able to work since January when it hit. My short term disability ends in July. Then what? Once that happens, who in the glorious medical community will see me??? (Do you really think they will volunteer any of their time??). And I am repeatedly told to rest, get sleep, eat well and reduce stress??? How?? Will anyone provide me with surety of a job/income?? How about nutritious food?? Water???
As sole caregiver to an elderly disabled spouse (wheelchair bound) whom I can no longer help, rendering me rather useless as a sole caregiver!
What and who is available to help??? Crickets. No - this is NOT at all stressful. Where is the care and compassion of our medical community??? Perhaps it left when they got their paychecks.
But! I am "better"...since January. My lungs look "relatively clear" on X-ray after also being diagnosed with pneumonia in January.
Extremely frustrated with our medical system prior to this as it has deteriorated immensely; this only magnifies it. Having to wait and play the phone tag games with doctor's offices is another frustration. It often takes 2-3 months to get into a specialist office. In the meantime the damage to the body continues. No doubt the patient is to blame because they didn't seek care immediately. 🙄. Whatever. Except, I did and the national healthcare system that everyone rushed to vote in puts more barriers to care than actually helping.
There is no help, no answers, only - "You STILL don't feel well????". "You STILL are sick???". "Will you ever go back to work??".
Additionally, the medical community in their infinite wisdom demands appointment after appointment which are all at least an hour drive away making the outing about a 4-5 hour day by the time you grab something to eat and return. What part of exhaustion and fatigue and weakness don't they understand?? Do they not teach this in medical school these days???
I am tired of all the BS and want answers and help.
Again, my apologies for my frustrations. I only hope others will share theirs and their stories and solutions as well.
Please, I beg everyone's forgiveness for my frustration in this post, but I am willing to say that I am NOT alone and some of you share my frustrations.
I really appreciate you writing as your post has spurred me to share some of my experiences in hopes of helping others and in the spirit of sharing ideas and possible solutions.
I am experiencing a very similar situation; I am also in my 50s and was healthy with a kicking immune system until the biological weapon (COVID) hit me in January.
Incidentally, I got this from a lousy long term care facility that had an outbreak in which they neglected to say anything about. I visited briefly to bring my spouse supplies while they were regaining strength from a hospital stay. Had we known, the spouse would have come directly home and not gone to the facility where they didn't give any of the rehabilitation strengthening exercises they billed Medicare for because of their "lockdown".
Yes, I used a mask. Yes, I hand sanitized after stepping out of the room and once again after getting into my truck - I wiped down my hands, my keys, my phone, AND the steering wheel. So much for preventative techniques and oh, how wonderfully well those masks we were forced to wear work. Hah! More lies and deception.
I used to walk or hike 2 miles per day on 4-6 days weekly. Now I struggle to walk 1/4 mile once a week, if that. There are weeks I can't even do that, like this week. I am now walking with a cane. I can walk into the next room and back and my heart rate jumps up to 150 and I am panting like I ran. I have nearly all the "typical" symptoms listed for long COVID except loss of taste/smell. I also experience feeling ethereal.
I am now in jeopardy of losing my job and income as of July because I haven't been able to work since January when it hit. My short term disability ends in July. Then what? Once that happens, who in the glorious medical community will see me??? (Do you really think they will volunteer any of their time??). And I am repeatedly told to rest, get sleep, eat well and reduce stress??? How?? Will anyone provide me with surety of a job/income?? How about nutritious food?? Water???
As sole caregiver to an elderly disabled spouse (wheelchair bound) whom I can no longer help, rendering me rather useless as a sole caregiver!
What and who is available to help??? Crickets. No - this is NOT at all stressful. Where is the care and compassion of our medical community??? Perhaps it left when they got their paychecks.
But! I am "better"...since January. My lungs look "relatively clear" on X-ray after also being diagnosed with pneumonia in January.
Extremely frustrated with our medical system prior to this as it has deteriorated immensely; this only magnifies it. Having to wait and play the phone tag games with doctor's offices is another frustration. It often takes 2-3 months to get into a specialist office. In the meantime the damage to the body continues. No doubt the patient is to blame because they didn't seek care immediately. 🙄. Whatever. Except, I did and the national healthcare system that everyone rushed to vote in puts more barriers to care than actually helping.
There is no help, no answers, only - "You STILL don't feel well????". "You STILL are sick???". "Will you ever go back to work??".
Additionally, the medical community in their infinite wisdom demands appointment after appointment which are all at least an hour drive away making the outing about a 4-5 hour day by the time you grab something to eat and return. What part of exhaustion and fatigue and weakness don't they understand?? Do they not teach this in medical school these days???
I am tired of all the BS and want answers and help.
Again, my apologies for my frustrations. I only hope others will share theirs and their stories and solutions as well.
Oh, my gosh! I empathize with what you are going through. I'm 83 years old (as of 2 days ago) and 4+ years post covid.
Here is some help: Please go to the free YouTube channel of the Bateman Horne Center. They speak our language.
Also: Please visit the free YouTube channel of Gez Medinger. He is 5 years post covid and offers informational videos with experts in the field.
And, lastly...another source of help is the free YouTube channel of Raelan Agle.
I'm sending you a big hug...
Pam
Please, I beg everyone's forgiveness for my frustration in this post, but I am willing to say that I am NOT alone and some of you share my frustrations.
I really appreciate you writing as your post has spurred me to share some of my experiences in hopes of helping others and in the spirit of sharing ideas and possible solutions.
I am experiencing a very similar situation; I am also in my 50s and was healthy with a kicking immune system until the biological weapon (COVID) hit me in January.
Incidentally, I got this from a lousy long term care facility that had an outbreak in which they neglected to say anything about. I visited briefly to bring my spouse supplies while they were regaining strength from a hospital stay. Had we known, the spouse would have come directly home and not gone to the facility where they didn't give any of the rehabilitation strengthening exercises they billed Medicare for because of their "lockdown".
Yes, I used a mask. Yes, I hand sanitized after stepping out of the room and once again after getting into my truck - I wiped down my hands, my keys, my phone, AND the steering wheel. So much for preventative techniques and oh, how wonderfully well those masks we were forced to wear work. Hah! More lies and deception.
I used to walk or hike 2 miles per day on 4-6 days weekly. Now I struggle to walk 1/4 mile once a week, if that. There are weeks I can't even do that, like this week. I am now walking with a cane. I can walk into the next room and back and my heart rate jumps up to 150 and I am panting like I ran. I have nearly all the "typical" symptoms listed for long COVID except loss of taste/smell. I also experience feeling ethereal.
I am now in jeopardy of losing my job and income as of July because I haven't been able to work since January when it hit. My short term disability ends in July. Then what? Once that happens, who in the glorious medical community will see me??? (Do you really think they will volunteer any of their time??). And I am repeatedly told to rest, get sleep, eat well and reduce stress??? How?? Will anyone provide me with surety of a job/income?? How about nutritious food?? Water???
As sole caregiver to an elderly disabled spouse (wheelchair bound) whom I can no longer help, rendering me rather useless as a sole caregiver!
What and who is available to help??? Crickets. No - this is NOT at all stressful. Where is the care and compassion of our medical community??? Perhaps it left when they got their paychecks.
But! I am "better"...since January. My lungs look "relatively clear" on X-ray after also being diagnosed with pneumonia in January.
Extremely frustrated with our medical system prior to this as it has deteriorated immensely; this only magnifies it. Having to wait and play the phone tag games with doctor's offices is another frustration. It often takes 2-3 months to get into a specialist office. In the meantime the damage to the body continues. No doubt the patient is to blame because they didn't seek care immediately. 🙄. Whatever. Except, I did and the national healthcare system that everyone rushed to vote in puts more barriers to care than actually helping.
There is no help, no answers, only - "You STILL don't feel well????". "You STILL are sick???". "Will you ever go back to work??".
Additionally, the medical community in their infinite wisdom demands appointment after appointment which are all at least an hour drive away making the outing about a 4-5 hour day by the time you grab something to eat and return. What part of exhaustion and fatigue and weakness don't they understand?? Do they not teach this in medical school these days???
I am tired of all the BS and want answers and help.
Again, my apologies for my frustrations. I only hope others will share theirs and their stories and solutions as well.
Hi @tufernhel. I am so sorry you have these extraordinary challenges that so many dont have a clue about that is inflamed by “you look/sound fine” as I just had again yesterday🙃. Dont know which state you’re in or your previous posts/ journey and hope helpful this suggestion of contacting your county for their version of IHSS(In home support services) for your husband also explaining your health. That will in turn help you with any of your household responsibilities ie paperwork, calls, cleaning, doctor visit assistance/rides…and this validates your challenges to assist legal aid lawyer to obtain long term disability for you which the 12 months inability to work requirement can be quite daunting and obviously your challenges keep you from healing. Also many healthcare systems patient advocates/social worker thru your pcp referral are able to assist process of ECM (enhanced care management) to further assist at a much higher level for those of us with unseen disabilities/caretaker. Hope not overstepping , as my adult childrens lifetime challenges, in also suggesting for higher help that your healthcare system should be able to provide a trauma level mental health provider as they have the resources and experience to suggest thru your pcp more immediate helpful action in a less stressful harmful health manner
and give you invaluable
techniques to maneuver all
your symptoms as well 🤞With my body brain taking 2 hrs to do this and trying to find words hope in kind light and wishing you the quickest healing🌈
Please, I beg everyone's forgiveness for my frustration in this post, but I am willing to say that I am NOT alone and some of you share my frustrations.
I really appreciate you writing as your post has spurred me to share some of my experiences in hopes of helping others and in the spirit of sharing ideas and possible solutions.
I am experiencing a very similar situation; I am also in my 50s and was healthy with a kicking immune system until the biological weapon (COVID) hit me in January.
Incidentally, I got this from a lousy long term care facility that had an outbreak in which they neglected to say anything about. I visited briefly to bring my spouse supplies while they were regaining strength from a hospital stay. Had we known, the spouse would have come directly home and not gone to the facility where they didn't give any of the rehabilitation strengthening exercises they billed Medicare for because of their "lockdown".
Yes, I used a mask. Yes, I hand sanitized after stepping out of the room and once again after getting into my truck - I wiped down my hands, my keys, my phone, AND the steering wheel. So much for preventative techniques and oh, how wonderfully well those masks we were forced to wear work. Hah! More lies and deception.
I used to walk or hike 2 miles per day on 4-6 days weekly. Now I struggle to walk 1/4 mile once a week, if that. There are weeks I can't even do that, like this week. I am now walking with a cane. I can walk into the next room and back and my heart rate jumps up to 150 and I am panting like I ran. I have nearly all the "typical" symptoms listed for long COVID except loss of taste/smell. I also experience feeling ethereal.
I am now in jeopardy of losing my job and income as of July because I haven't been able to work since January when it hit. My short term disability ends in July. Then what? Once that happens, who in the glorious medical community will see me??? (Do you really think they will volunteer any of their time??). And I am repeatedly told to rest, get sleep, eat well and reduce stress??? How?? Will anyone provide me with surety of a job/income?? How about nutritious food?? Water???
As sole caregiver to an elderly disabled spouse (wheelchair bound) whom I can no longer help, rendering me rather useless as a sole caregiver!
What and who is available to help??? Crickets. No - this is NOT at all stressful. Where is the care and compassion of our medical community??? Perhaps it left when they got their paychecks.
But! I am "better"...since January. My lungs look "relatively clear" on X-ray after also being diagnosed with pneumonia in January.
Extremely frustrated with our medical system prior to this as it has deteriorated immensely; this only magnifies it. Having to wait and play the phone tag games with doctor's offices is another frustration. It often takes 2-3 months to get into a specialist office. In the meantime the damage to the body continues. No doubt the patient is to blame because they didn't seek care immediately. 🙄. Whatever. Except, I did and the national healthcare system that everyone rushed to vote in puts more barriers to care than actually helping.
There is no help, no answers, only - "You STILL don't feel well????". "You STILL are sick???". "Will you ever go back to work??".
Additionally, the medical community in their infinite wisdom demands appointment after appointment which are all at least an hour drive away making the outing about a 4-5 hour day by the time you grab something to eat and return. What part of exhaustion and fatigue and weakness don't they understand?? Do they not teach this in medical school these days???
I am tired of all the BS and want answers and help.
Again, my apologies for my frustrations. I only hope others will share theirs and their stories and solutions as well.
I understand. We sound like the same person. I have had this for 3 years now. I used to run every morning, in the best shape of my life. Now, Any activity I do if I have the energy, I pay for the next day with awful fatigue and malaise. There are mornings that I wake up feeling poisoned. That is the only way to describe it to people that do not understand. The health care system in this country is broken and has been for a long time. I, too, had to quit my job. I am working on an MSW online. Even working on assignments causes fatigue and the brain fog leaves me fighting to use the correct words. I applied for SS disability. I was turned down. I am living off student loans. I am 54 years old. Doctors do not understand this. I can tell you what I do know from what I have read and researched. This is an illness of inflammation and it causes our immune systems to fight itself. I have run the gambit of different immune disease symptoms, from RA, to interstitial cystitis, GI issues, weird rashes, head pains, racing heart, dizziness, fatigue. The symptoms of this are all over the place and a lot of them mimic other autoimmune diseases. I got a lot of blood work after the first year. They tested me for Sjorgens, RA, Lupus, MS and others. All negative even though my auto nuclear antigen test came back positive. Now, the current administration has abolished the committee on Long COVID, a federal program studying this. All my doctor and I can do is treat some of the symptoms. I take Vyvanse for ADHD and have for years. It does help with the fatigue, gabapentin for body pain, I drink water in the morning with Emergen-C, I give myself B12 shots monthly and due to the hopelessness I felt and depression, I started taking Cymbalta (lowest dose 30 mg). I will say that these help some, however I still can not function like I did. I am frightened of what my future holds, but I try to remain in the present or I get extremely anxious and stressed. I have had to change what I eat also. I can't drink anything but water, sugar makes me feel a lot worse, salt has to be minimal, for me. Hang in there and keep sharing. I know that this group thread has helped me feel not as alone, although it is frustrating to read as I empathize with others in this nightmare. I have learned some from this website also. They talk about some of the research and it gives me some hope. https://recovercovid.org/
Yes. With frequency. And they are accompanied with much discomfort and pain. This happens at night. I have used pain topicals that seem to work alright. I was finally able to see a long COVID Dr., after months of waiting, who suggested rehab to deal with this and my heavy leg syndrome, that happened as a result of long COVID. It has hampered my ability to walk with ease, which I find very unsettling. I will also start taking progressively higher doses of a compounded drug, not yet aproved by the FDA called naltrexone. I bellieve other sufferers of long COVID have mentioned this drug.
I also have been involved with several long COVID studies, through U of A and NYU, among other institutions. My last is ending this October. I did this so that others will not go through what we have and so that there are more studied drugs available to mitigate the symptoms we are enduring.
Connect
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Medrol dose pack 4 mg oral tablets. It’s strong stuff with side effects to consider.
Hi Dan,
Gratefully, I was able to visit Mayo Clinic in-person and participate in their Post-Covid Care Clinic's program for patients impacted by Long-Covid or Post-Covid issues. After spending a week their and moving thru a series of tests, etc., their team was able to properly diagnose what was happening with me and then I went thru their virtual program and they worked with my local PCP on a treatment plan that included the following pieces as well as working with a local professional on Cognitive Behavioral Therapy.
My main symptoms were the muscle tremors, overall chest pain, radiating nerve pain, overall CNS and ANS dysfunction (rapid heart rate, GI issues, etc.), overall fatigue, and difficulty with sleeping. For the pain management and sleep disruption, my PCP started me on a low dose (10mg) of Amitriptyline and a regimen of Low Dose Naltrexone (LDN) with the hopes of resetting my central and autonomic nervous systems - I've been increasing dosage from 1mg to 4mg presently (increasing 1mg every 3 months) and my pain is much improved, I am sleeping well again, and I've had nervous system functioning (heart rate, tremors, muscle spasms, GI issues) almost restored to normal. LDN in higher doses is given to opioid overdose patients with the hopes of resetting their CNS and helping the body to naturally produce endorphins.
I hope you find this helpful and please reach out with any questions, Steve
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Like -
Helpful -
Hug
1 ReactionPlease, I beg everyone's forgiveness for my frustration in this post, but I am willing to say that I am NOT alone and some of you share my frustrations.
I really appreciate you writing as your post has spurred me to share some of my experiences in hopes of helping others and in the spirit of sharing ideas and possible solutions.
I am experiencing a very similar situation; I am also in my 50s and was healthy with a kicking immune system until the biological weapon (COVID) hit me in January.
Incidentally, I got this from a lousy long term care facility that had an outbreak in which they neglected to say anything about. I visited briefly to bring my spouse supplies while they were regaining strength from a hospital stay. Had we known, the spouse would have come directly home and not gone to the facility where they didn't give any of the rehabilitation strengthening exercises they billed Medicare for because of their "lockdown".
Yes, I used a mask. Yes, I hand sanitized after stepping out of the room and once again after getting into my truck - I wiped down my hands, my keys, my phone, AND the steering wheel. So much for preventative techniques and oh, how wonderfully well those masks we were forced to wear work. Hah! More lies and deception.
I used to walk or hike 2 miles per day on 4-6 days weekly. Now I struggle to walk 1/4 mile once a week, if that. There are weeks I can't even do that, like this week. I am now walking with a cane. I can walk into the next room and back and my heart rate jumps up to 150 and I am panting like I ran. I have nearly all the "typical" symptoms listed for long COVID except loss of taste/smell. I also experience feeling ethereal.
I am now in jeopardy of losing my job and income as of July because I haven't been able to work since January when it hit. My short term disability ends in July. Then what? Once that happens, who in the glorious medical community will see me??? (Do you really think they will volunteer any of their time??). And I am repeatedly told to rest, get sleep, eat well and reduce stress??? How?? Will anyone provide me with surety of a job/income?? How about nutritious food?? Water???
As sole caregiver to an elderly disabled spouse (wheelchair bound) whom I can no longer help, rendering me rather useless as a sole caregiver!
What and who is available to help??? Crickets. No - this is NOT at all stressful. Where is the care and compassion of our medical community??? Perhaps it left when they got their paychecks.
But! I am "better"...since January. My lungs look "relatively clear" on X-ray after also being diagnosed with pneumonia in January.
Extremely frustrated with our medical system prior to this as it has deteriorated immensely; this only magnifies it. Having to wait and play the phone tag games with doctor's offices is another frustration. It often takes 2-3 months to get into a specialist office. In the meantime the damage to the body continues. No doubt the patient is to blame because they didn't seek care immediately. 🙄. Whatever. Except, I did and the national healthcare system that everyone rushed to vote in puts more barriers to care than actually helping.
There is no help, no answers, only - "You STILL don't feel well????". "You STILL are sick???". "Will you ever go back to work??".
Additionally, the medical community in their infinite wisdom demands appointment after appointment which are all at least an hour drive away making the outing about a 4-5 hour day by the time you grab something to eat and return. What part of exhaustion and fatigue and weakness don't they understand?? Do they not teach this in medical school these days???
I am tired of all the BS and want answers and help.
Again, my apologies for my frustrations. I only hope others will share theirs and their stories and solutions as well.
-
Like -
Helpful -
Hug
1 ReactionOh, my gosh! I empathize with what you are going through. I'm 83 years old (as of 2 days ago) and 4+ years post covid.
Here is some help: Please go to the free YouTube channel of the Bateman Horne Center. They speak our language.
Also: Please visit the free YouTube channel of Gez Medinger. He is 5 years post covid and offers informational videos with experts in the field.
And, lastly...another source of help is the free YouTube channel of Raelan Agle.
I'm sending you a big hug...
Pam
Hi @tufernhel. I am so sorry you have these extraordinary challenges that so many dont have a clue about that is inflamed by “you look/sound fine” as I just had again yesterday🙃. Dont know which state you’re in or your previous posts/ journey and hope helpful this suggestion of contacting your county for their version of IHSS(In home support services) for your husband also explaining your health. That will in turn help you with any of your household responsibilities ie paperwork, calls, cleaning, doctor visit assistance/rides…and this validates your challenges to assist legal aid lawyer to obtain long term disability for you which the 12 months inability to work requirement can be quite daunting and obviously your challenges keep you from healing. Also many healthcare systems patient advocates/social worker thru your pcp referral are able to assist process of ECM (enhanced care management) to further assist at a much higher level for those of us with unseen disabilities/caretaker. Hope not overstepping , as my adult childrens lifetime challenges, in also suggesting for higher help that your healthcare system should be able to provide a trauma level mental health provider as they have the resources and experience to suggest thru your pcp more immediate helpful action in a less stressful harmful health manner
and give you invaluable
techniques to maneuver all
your symptoms as well 🤞With my body brain taking 2 hrs to do this and trying to find words hope in kind light and wishing you the quickest healing🌈
-
Like -
Helpful -
Hug
5 ReactionsI understand. We sound like the same person. I have had this for 3 years now. I used to run every morning, in the best shape of my life. Now, Any activity I do if I have the energy, I pay for the next day with awful fatigue and malaise. There are mornings that I wake up feeling poisoned. That is the only way to describe it to people that do not understand. The health care system in this country is broken and has been for a long time. I, too, had to quit my job. I am working on an MSW online. Even working on assignments causes fatigue and the brain fog leaves me fighting to use the correct words. I applied for SS disability. I was turned down. I am living off student loans. I am 54 years old. Doctors do not understand this. I can tell you what I do know from what I have read and researched. This is an illness of inflammation and it causes our immune systems to fight itself. I have run the gambit of different immune disease symptoms, from RA, to interstitial cystitis, GI issues, weird rashes, head pains, racing heart, dizziness, fatigue. The symptoms of this are all over the place and a lot of them mimic other autoimmune diseases. I got a lot of blood work after the first year. They tested me for Sjorgens, RA, Lupus, MS and others. All negative even though my auto nuclear antigen test came back positive. Now, the current administration has abolished the committee on Long COVID, a federal program studying this. All my doctor and I can do is treat some of the symptoms. I take Vyvanse for ADHD and have for years. It does help with the fatigue, gabapentin for body pain, I drink water in the morning with Emergen-C, I give myself B12 shots monthly and due to the hopelessness I felt and depression, I started taking Cymbalta (lowest dose 30 mg). I will say that these help some, however I still can not function like I did. I am frightened of what my future holds, but I try to remain in the present or I get extremely anxious and stressed. I have had to change what I eat also. I can't drink anything but water, sugar makes me feel a lot worse, salt has to be minimal, for me. Hang in there and keep sharing. I know that this group thread has helped me feel not as alone, although it is frustrating to read as I empathize with others in this nightmare. I have learned some from this website also. They talk about some of the research and it gives me some hope.
https://recovercovid.org/
-
Like -
Helpful -
Hug
1 ReactionYes. With frequency. And they are accompanied with much discomfort and pain. This happens at night. I have used pain topicals that seem to work alright. I was finally able to see a long COVID Dr., after months of waiting, who suggested rehab to deal with this and my heavy leg syndrome, that happened as a result of long COVID. It has hampered my ability to walk with ease, which I find very unsettling. I will also start taking progressively higher doses of a compounded drug, not yet aproved by the FDA called naltrexone. I bellieve other sufferers of long COVID have mentioned this drug.
I also have been involved with several long COVID studies, through U of A and NYU, among other institutions. My last is ending this October. I did this so that others will not go through what we have and so that there are more studied drugs available to mitigate the symptoms we are enduring.