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Hi Everyone,
New here, I have read most recent of the stories here and I can’t believe how many of us there are. I had Covid twice, first time was in February 21, then again August 22. Since the first time I have experienced severe sinus issues, feeling off balance (like I’m drunk), ringing in my ears and heart palpitations (racing heart, skipped heartbeats and fluttering) After the second time it wasn’t until about 7/8 months ago I started having new symptoms gastrointestinal problems, muscle twitching, aching in my arm joints, weakness in my hands, ringing and fluttering in my ears and the sensation of vibration in my body (yes that’s a strange one) and the sensation of pins and needles in my head, extreme lightheadedness, that gets so bad I just know I’m going to lose consciousness. Like all of you you I have had several test, procedures from upper endoscopy, colonoscopy, stress test, echocardiograms, CT scans, MRI, X-rays, an EP study (electrophysiology tests my heart’s electrical system through catheterization) heart monitors, so many blood test…nothing! They symptoms come in waves, I might feel ok for a week or two, then something will creep back up. started getting very depressed, thinking I’m imagining it all. Cried so much feeling no believes me, that these are some phantom symptoms or just anxiety. I was suicidal for a while because living like this wasn’t living. I just was so desperate for a cause, some answers. Lately it seems when a wave comes the symptoms are getting worse. I just signed up for a Long Covid Care program here in NYC. I don’t know why I’m still trying to get help really at times I just wish whatever this is would just take me out already, instead of suffering through this.
I must say learning of this support group I don’t feel alone anymore. I pray every one of you are healthy and happy again.
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@celia16 I relate more than words can describe. How were you officially diagnosed? Could you please explain?
Any update from your assessment?
I was diagnosed by my ENT at one of country’s largest teaching hospitals with post covid syndrome, based on my symptoms, which included smell/taste disorder. My neurologist ruled out diabetic neuropathy, which included many neurological symptoms loss of balance, tingling, twitching etc. Returning to ENT soon. Some of my symptoms are better, but my smell/taste issue remains. It’s extremely distressing. I also have muscle issues, for which the ortho says is from overuse….Tennis elbow. Idk if tat is related or not.
The LC Care Doctor believes I have POTS, that was possibly brought on by Covid. He said I have “like” Dysautonomia symptoms.
Said only thing I can do for POTS, up my water and salt intake, and wear compression garments.
My Neurologist prescribed Gabapentin 100mg to me a couple of weeks ago to possibly help with the internal tremors. Honestly scared to take it, I just can’t not take any more symptoms from possible side effects. Still debating about taking it.
But unfortunately that was about it, I don’t go back until June to update him, but said if I need to see him sooner call.
So unfortunately nothing promising or hope.
It makes me crazy to be prescribed a new med with no follow up until months later! I have gotten the “call the office if necessary” directive too. If I call, I’m placed on a cancellation list and that’s it.
These doctors don’t seem to understand the DISTRESS we are experiencing. If the prescribed medication doesn’t help, we can’t wait 4-6 months for follow-up!
The Neurologist I have seen has handled me exactly the same.
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2 ReactionsI relate to all you've said and what everyone else here is saying as well. It is so frustrating to have to educated medical professional about Long Covid and how LC is affecting me and explaining WHY I need x test or y treatment protocol. Fortunately, I have a wonderful PMC who "gets" LC, understands and refers me out to myriad specialists for treatment. (With so many different LC symptoms - the NIH has documented over 200(?!) - and every person being different, it's no wonder there're no LC treatments yes. My eyes raised and I laughed about your comment about "party in my fat cells". Probably!! Fasting helped. One of my many LC symptoms was getting daily migraine-like headaches. After a 3(?) week fast 18 months agao they stopped (unexpectedly) and never came back. LC also gifted me nonstop, often excruciating, muscle and joint pain, pain, pain. Docs prescribed mega dosage levels pf ibuprofen, acetaminophen (Tylenol) and oxycodone that I ate like candy to keep the pain at bay. I completed a 6 week fast the middle of last month. Also, unexpectedly, the muscle and joint pain diminished so significantly that it feels almost non-existent. The pain meds have been untouched since the fast. Fingers crossed that that particular pain doesn't come back and I can plan to fast again in a few months. Now, back to making my LC follow up appts for my sleep study and the cardiologist, pulmonologist, gastroenterologist, ophthalmologist, etc., etc., etc.,..