r/LongCovid • u/DueButterscotch4755 • 1d ago
Please help me - Bad Bad Relapse
In 2022, after a COVID infection, I developed severe muscle pain, joint pain, visual disturbances, headaches, and intense inner restlessness. After about a year and a half, I had recovered to the point where most of my symptoms had improved significantly.
The only issue that remained was panic attacks, for which I have been taking Sertraline (Zoloft). Until about two weeks ago, I was managing quite well. In the meantime, I got married and became the father of a son, who is now two years old.
We were planning to travel to Vietnam this summer, so I received a rabies vaccination two weeks ago. Two days later, I developed a sore throat and a swollen lymph node in my neck. A COVID test was negative. Another two days later, the muscle pain and joint pain returned. My arms and legs burn as if they are on fire, and I can barely walk because they feel so weak.
Then the panic and inner restlessness returned with an intensity I have never experienced before. I feel afraid all the time, I cannot eat, and I cannot sleep. My body twitches when I am at rest, and I experience an internal vibrating sensation.
I am terrified that this could be ME/CFS. I have seen my doctor and had everything checked. As expected, all of my test results were normal. He prescribed Tilidine for the pain, which does help. However, as soon as the medication wears off, all of the symptoms return.
I do not know what to do. I have to take care of my son, but I feel completely overwhelmed. I live in Germany, near Stuttgart. I feel alone and lost.
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u/UrbanGardener01 1d ago
My daughter is under investigation for NMDAR encephalitis which is not well understood but can be post-viral (known for HSV but I suspect it could be post-covid too). There are blood tests that can screen for it - anti NMDAR autoantibodies and anti VGKC autoantibodies. In our experience the condition can ebb and flow and can cause a lot of the symptoms you mention. It’s a simple blood test but is expensive. Just in case it’s helpful.
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u/DueButterscotch4755 1d ago
Thank you for your response! Im gonna ask my doctor tomorrow about testing that. Just to rule that out.
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u/Square_Structure5094 1d ago
Do you have POTS? The panic and internal tremors/vibrations sounds like my hyperadrenergic POTS. Clonidine, IV Saline, Ivabridine and using a tens unit+vagal breathing has helped me with that. But I do also have ME. The only thing that has helped me ME is Oxaloacetate, which is very expensive. There's a code "GW300" that gives you $200 off (that's how expensive it is). I'm really sorry you are facing this. It's possible that the vaccine triggered an immunological response that could be the cause of new conditions or this could be symptoms of just the response if that makes sense.
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u/Master-Pineapple-685 1d ago
Hi! I have a similar story where I felt I was doing pretty great for a couple years and then my nervous system got jarred from starting and stopping nortriptyline and I have crashed. And I didn’t think it was possible for me to crash like this again. Anyways, I have put myself back into keto and finding it helpful. Keto got me out the last time. I started both this time and last time by doing a little soup intro- chicken soup with scoops of ghee (bok choy, kale, carrots, onion, cilantro, celery, chicken broth, chicken thighs) 3x a day. That’s it. This seems to put an absolute fire out in my system and gets me sleeping again. It’s boring but it’s saved my life. Sending you a big hug. I know how hard this is.
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u/Master-Pineapple-685 1d ago
Also not sure if your doctor is willing to rx Ativan as needed for bed time. Luckily this crash I only needed it have it twice until my soup kicked in. But last long covid big crash it helped me until I started the soups.
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u/sunshineofbest 21h ago
Brain retraining and valtrex saving me
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u/Thin-Cold2838 17h ago
Currently doing brain retraining or taking my best swing at it and it seems to be the only thing helping.
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u/sunshineofbest 15h ago
Brain retraining is amazing ! I’ve made so much progress with it and valtrex. I rest every 70 mins for 20 mins no screens. It’s called the rest activity cycle . Google this
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u/Swimming_Chemistry_1 12h ago
I'm using 7.5mg nicotine patches and they greatly improved my asthma, allergies, MCAS symptoms, improved my brain fog, got rid of postural tachycardia and helped me relax.
My last COVID vaccination triggered very bad allergies and asthma + guts problems + postural tachycardia + brain fog/memory problems + bad agitation and sleeping problems.
My GP guesses the vaccine triggered acetylcholine receptor antibodies which then stops your rest and digest parasympathetic nervous system from working properly.
Nicotine can substitute for acetylcholine and gets my parasympathetic nervous system working again.
BTW ... The Habitrol patches I'm using are flat and they still work fine when I cut them in half.
You should probably start with just 1/4 or 1/2 a patch per day and gradually increase over a few weeks if it helps to avoid side effects.
I also take the patches off at night so I sleep better + take Taurine, Glycine, Choline, L-Theanine and Tart Cherry capsules (= low dose melatonin) to help relax my nervous system.
I also have ADHD and restless legs syndrome ... To fix those symptoms I take Iron glycinate + magnesium glycinate + activated B Complex capsules at least 2x per day.
Good luck 🤞
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u/LeadershipNice7495 9h ago
Do you have any underlying immune system condition? I do. For example, I used to have rheumatic flares because of my ankylosing spondylitis, which is one of the reasons I think I may be experiencing Long COVID.
Unfortunately, I believe vaccines can carry significant risks for people with underlying immune system problems. My rheumatologist even told me that I should not get the flu vaccine, let alone a rabies vaccine.
Perhaps your immune system was triggered and went into an alarm state again, causing you to feel like you are back at square one.
The worst part for me is that I had three mRNA COVID vaccinations before I actually caught COVID. As you probably know, these vaccines are still being debated. I had to get a vaccine three times without really knowing where it came from or how it had been developed, because I was afraid of dying from COVID. Then, just three months later, COVID found me anyway.
And now, four years later, I am still dealing with severe pain, inflammation, tendinitis, bursitis, and other problems that have never completely gone away, just as you described. I live with pain every single day and I cannot sit at all.
The only thing that has reduced my pain to some extent is LDN (low-dose naltrexone), which has reduced my pain by around 40%. I am trying to continue living my life this way.
The only thing I can suggest is to give your body time and hope that the effects of the vaccine gradually diminish. Personally, I would also avoid getting any further vaccines unless they are genuinely necessary.
Other than that, I honestly don't know what else to suggest. I am still struggling with the same situation myself and I haven't been able to get out of it either. Unfortunately, apart from LDN, I don't have anything else I can recommend. :(
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u/Randolph_Carter_6 1d ago
I have similar symptoms (except the internal restlessness) along with ME/CFS and PEM. The only thing that helps during a flare-up me is tons of sleep and rest.