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New long COVID symptoms? Have you encountered new ones?
Hello friends, I am in month 8 of long covid. I have seen seen reduced severity of original symptoms, but also find new ones that I can not find any other cause for. Here's one: food that I have eaten my whole life now is starting to irritate my tongue and the roof of my mouth. My tongue burns and the roof of my mouth feels raw like I rubbed it with sandpaper. All spicy seasoning has long been eliminated. Maybe an allergic reaction that is aggravated by the autoimmune aspect of Long Covid? Speaking of which, my seasonal juniper allergies have been terrible this year, much worse than ever before. Same function?
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Exactly, and being a nurse I know some of the medicines and the reaction they are going to give and don't take them. I never in my life has high blood pressure but have since having long covid. Some of those meds exacerbate the symptoms too. I went from taking miralax, probiotics and senna for constipation to having been prescribed over 20 meds for long covid. I just feel like at this point is there anything out there that can maybe just give me a system reboot because all these meds and experimenting on me is not it! On Monday I have to get a heart monitor to see if my shortness of breath is from my heart or lungs. My neurologist prescribed me another new med he said it helps people with narcolepsy to see if it will help me...the side effects of this med....just OMG!! I am tired. So tired of being a Guinea pig and long covid
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4 ReactionsI’m sorry to hear this
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1 ReactionYes , you said it we are like Guinea pigs they are testing things out on us, without regard that we are human beings and we have families and that our families are suffering along with us. When we it end.
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1 ReactionSorry when will it end.
I appreciate the frustration with being given meds that do not produce the relief one is seeking, but I do not think applying the term "guinea pig" is appropriate nor is suggesting people not take their meds. I fully understand if one feels left on their own but that is different than categorically and broadly criticizing as I know of some long covid patients that in fact have received relief from (new) medications given based on specific testing . I am open to suggestions as to how long covid can be addressed and have a particular interest in what is going on with these clinics in terms of being a clearinghouse and what their particular role is in advancing treatment and research.
NO ONE has come up with a proven treatment for long covid. Common standard of care prescriptions are not effective as a rule. I recently heard of trying Ivormectin and steroids combination for long Covid like they do for treating active Covid infection. Sounds logical to me. Has anyone gone this treatment route?
That's true because the cause of long covid has not been determined, or even if there is one "cause". For examples there was a sudy that showed some success with the drug Paxlovid which is also used for treatment of (initial) covid. Then you have read here and elsewhere that people have realized relief in approaching it as a central sensitization issue. The benefits from various approaches differ from great relief to very little and is why I'd like to know how clinics are being used as a means of not only gathering data and sharing, but if they will contribute to the focus of future studies and research, So you have the possibilities that long covid is the result of impact from the original infection, the non-detectable (continuing) presence of a part or aspect of the virus existing in the body, and/or the result of one's immune system going awry like an autoimmune disorder.
I find it appalling that national medical organizations and their media completely ignore this nationwide health story that affects thousands upon thousands of citizens.
Who is diligently researching? Anyone?
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2 ReactionsIn 22 months, I have experienced two one week periods of feeling like myself again. These episodes did not last. Now, I am, also, working through constipation/diarrhea problems and shortness of breath after exertion (PEM) as bad as ever. I am sick of going to doctors who don't do anything so have not revisited the Pulmonologist or Cardiologist. I carry OTC oxygen which seems to help temporarily with episodes of SOB - wonder why when nothing is wrong with my lungs?
I am working remotely with a post-Covid clinic. Their prescription reflects the same treatment that I have been practicing on my own - pace myself and gradually increase exercise. Hard to do when any upright exercise brings on SOB. I do my own yoga/abdominal routine lying down everyday.
In the meantime, I have developed shoulder pain - was up all night with it and have a fractured knee which is being treated with time and a knee brace. I'm waiting for a call from the doctor about my shoulder right now. I feel like my body is collapsing around me.
Anyone have any other ideas?
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2 ReactionsI have a friend who is blind and does sports radio and a post game show. There's been stories done about his ability to do that given being blind, but he says long covid has been a more formidable challenge. I think in terms of approving treatments and drugs, the chronic nature of of "long" covid needs to be considered. I've followed up with reporters who have done stories on covid asking if they plan a follow-up on long covid. I've suggested a focus on the (long covid) clinics as I thought they were to be a clearinghouse of sorts helping link symptoms and treatments and providing a springboard for further research.