Post Covid weird symptoms

My memory sucks too when I’m the least bit insecure of my statements.

So understand. What I find helpful in this group is the reassurance of not being nuts after doctor after doctor says "I've never heard that before" -- and I know what I'm experiencing - and now, because of the webinar on which I spoke a few weeks ago, proof. It was a very very bad "mouth" and throat day. Speakers are never supposed to apologize for anything. I had always had a good speaking voice - strong, clear. This was not and these were people, some of whom know me or of me and well .................

Thank you so much, @law59 [our "handles" remind me of the early AOL chat room days when almost no one used names!] So vit C gummies better than anything else? NO one of the docs I've seen has recommended anything at all.

Did you have any testing to better understand the central nervous system malfunction for this and related issues? I just read a fascinating article about "Long COVID toe and rashes" https://www.aad.org/public/diseases/a-z/covid-toes I had the toe issue in the beginning - and it periodically returns. It then became an ingrown big toe toenail. I had never in my 70+ years had an ingrown toe or finger nail. The rash - one doctor - who is considered a long COVID specialist - said it was not related to COVID and was lipedema tho' that too has been debunked. The rash that won't go away and the swelling of my leg and foot and two areas of rashes came during COVID in 2023. (Thought first to be lymphedema, a 2 hour ultrasound ruled that out.) It just won't stop and is so uncomfortable.

Central nervous system next I guess. And a PET scan to check to see if this all has brought NHL back - which was in remission but likely triggered by all the rest or so it is supposed.

We are all guessing as are the scaled-back research, aren't we?

Sorry this was longer than intended.

JE

Hi @jeindc. Know your words so well and my response probably long too that will take couple of hours to type😛 . Have had many vials of blood, chest ct’s, brain mri’s, ent scope, pft’s, sleep study, ….Was fortunate in beginning of this to had worked for critical care pulmonary/allergy physician who knew my health well, was honest about the health challenges and lack of understanding or tests, and who helped many doctors worldwide and countless covid patients himself. The first ER physician was also very aware and empathetic explaining in detail with appreciated brutal honesty “We just dont know and treat the symptoms we can”. My other half is also military medically trained so knew my symptoms needed different immediate attention and medical remedies with persistence trauma level care in my healthcare system🙃 I have no doubt I am alive today because of that. The rash, itch, bump no itch, shingles like, internal itch/pain…same challenge appts not available during particular type as everchanging so take pics, do best to eat low histamine and have kept info on food reactions for years with epi pen available. Despite all very lucky to be here and hope you too find that with your quickest healing journey 🌈

Your helpfulness continues. Thank you. I am learning to live with this just not happily. Forced to stop working in work I love and even at 78 at which I excelled.

I am taking photos .. have from the start. What can't be seen are the lost voice tho' there are attempts at speaking on a webinar that indicate it.

It is all fascinating and I'm very glad you have had such good help and are willing to pass it along.

JE

Does anyone in this forum have abnormal ANA and high homocysteine? Both my daughter and I have ME/CFS and these lab results. I also have Long Covid.

I went through the Long Covid program at Mayo. While I feel it was more information gathering on their end, the most helpful thing coming out of it was realizing I wasn’t crazy! The strangest symptom I had was small pieces of BONE forming under the skin in my face. They said it was my immune system over healing. Used a cream medication for a year and all is good now.
They also prescribed Low-dose Naltrexone for severe Fibromyalgia pain.

4 days after vaccine I got very ill and haven’t been the same. Symptoms are multi systemic. Vertigo, dizziness, blurred vision, tinnitus, tremor down torso, arms and legs, aphasia, difficulty speaking, forming sentences, losing train of thought, detachment from reality(I don’t know the right word to describe this sensation. It felt like I was rocking back and forth but I wasn’t. It was all on the inside. Fatigue like I’ve never felt, I would crash with a he’s fullness sensation with severe tinnitus and body tingling/numbing. I broke out into rashes that came and went on parts of my body neck chest and face. I suddenly had difficulty walking and even on a slight incline. The week before I had been working out at orange theory and going for 10 km runs with my husband?! Told to get the second shot and 24 hours later I’m in an ambulance with heart pain/ severe cramping and sweating. I was finally dx with MECFS; MCAS; Dysautonomia; after 2 years Positive ANA for Sjogren’s and Lupus Anticoagulant. After another year, confirmed dx of Lupus SLE. I had to manipulate my way into the Long Covid Clinic because I never had Covid only the vaccine. No one wanted to even document that the vaccine triggered my illness even tho it was obvious it did. My GP literally told me he could get fired if he documented on my chart that the vaccine caused my illness. So because of physicians fear for their jobs it’s been a challenge to even apply for vaccine injury compensation. I worked as a counsellor in a cancer centre- Patient and Family Counselling and I’m too sick to work in my career that I loved and too sick to work in any capacity. I don’t believe I’m going to live a long life based on how I feel on a daily basis. I have ongoing weird symptoms that migrate around my body and brain. My short term memory is not good, my concentration and brain fog are a challenge. Itchy shins swollen glands in my neck on a daily basis. Waking up with an internal tremor that feels terrible. Daily crashes and I wake up with stiff arms and hand always on my chest with the tremor tinnitus and head fullness sensation. I don’t know but I wonder if I’m having seizures and not know it. My muscles spasm. It’s very difficult to describe. It’s a very isolating feeling because doctors look at you like you have two heads. I feel gaslit most of the time. I woke up a year ago and stood up out of bed only to find my legs were heavy, couldn’t move them at first, like thy er encased in cement. This lasted a week and improved. Had also noticed leg and arm weakness at the same time. Falling for no reason. Neurologist took me off amitryptaline and within two weeks my legs and weakness improved but that’s when the pain began. I had been on amytriptaline for migraine pain years before the shot. I had migrating joint and muscle pain all over. Ankles, knees, elbows, but also muscles in forearms and legs. Hair had been falling out, lost 20 pounds overnight, my muscles looked like they were wasting suddenly. That’s when I pushed to see a second Rhumatologist who sent me for the right tests and these tests showed I have Lupus SLE. Likely brought on by the vaccines. Now on Plaquenal but it doesn’t help with my symptoms and pain. This is a chronic illness that only seems to get worse as time goes by tho I’m able to talk much better now. My leg weakness is much better. This Illness isn’t long covid because I never had covid. It’s from the vaccine. Unfortunately after working in healthcare for 23 years, I have lost my faith in the medical community because they were too afraid to investigate and speak up. The gaslighting and this lack of support is what hurts more than my illness. I also know that as long as this goes on there will never be a cure or even a name for my illness. Spending the rest of my life feeling so sick is horrifying. I used to co- facilitate a brain tumour support group and I would like to do the same for the vaccine injured. We don’t have long covid we have long vax. We are different and have been treated differently in that we have been ignored. I hope as time goes by, more healthcare practitioners and scientists will be interested in acknowledging and studying the vaccine side effects and injured so there can be a cure!! I would love to feel well again and have my life back ❤️

I am so sorry to read about all you have gone through. I was first diagnosed with ME/CFS by two immunologists in 1984. I won't go through all my symptoms, but many were similar to what you have experienced. Over time, after spending a lot of money on diagnosis and treatments from specialists, I did get better and had what my doctor referred to as a functional cure. That means, the problem is still there, but you have beaten it back. I was able to work, travel, play a little golf with my husband, bake and paint. (No aerobic exercise, however.) All this came to a screeching halt in August 2022 when I was the guest speaker at a veterans' convention. I got Covid; took Paxlovid and tested negative two weeks later. A month later, I developed high blood pressure, A-Fib, hearing loss and difficulty walking so that I needed a cane. Then in May, I got Covid again. I am not sure if this time added to my symptoms. The good news is that I am improving. My heart and bp seem okay and I have worked on balance and walking and don't need a cane anymore. I still have ME/CFS and LC, but after 40 something years, I have defined a set of treatments that seem to help. The Covid vaccine contains a spike protein from Covid (but not the whole virus). I don't know if it is okay to exchange emails on this forum, but if so, I will be glad to share my story with you.

Hi @tls5alex. You have my complete empathy and understanding. Appears your professional experience is moving you forward in this and hoping ok offer further suggestion. Since the medical community has no one size fits all cause or remedies for these symptoms and everyone’s different reactions, related to covid vaccines or tested positive covid virus yet so many asymptomatic and not tested or past positive result timeframe🙃, seeking financial assistance based on symptoms
may be quicker route🤞Many have to seek ssdi etc with no formal diagnosis and since claims are awarded on inability to work thru documented daily life challenges, hopefully your physicians could share those and the challenges in records instead of focusing on a blanket diagnosis. Further an attorney with
this type of claim experience
vital🤞 Hope this helps you with some stress relieving financial assistance for quickest healing possible🌈