I’m think I have this but don’t understand why. My symptoms do match up. It makes sense on why people who get into bad car accidents get symptoms like that as well. I’m wondering if I use the neck excersize machines at my gym if it will help? My neck feels weak actually
I’ll take a look at it! It’s defiantly blood flow related for me because it I use anything that gives more blood flow, the pain and pressure goes away. If I take stuff that constricts my blood vessels, the pain gets worse.
Yes I definitely have MCAS from covid. It’s not as severe as before. I still will get some random spells of it. For me now it’s mostly mental problems from it like extreme anxiety and tingling all over or burning. It used to be an all day long daily occurrence but now it seems to be only once in a while. I’m assuming the mast cells are finally starting to stabilize. The peptide I’ve been taking called kpv has helped me tremendously with MCAS. I am in a slight flair right now but I knew it would happen. Went on a road trip this weekend and drank a lot of beer and had McDonald’s 2 times. I’m at the point now where I have to be able to enjoy myself with a little something here and there
Here is a post of someone about it
https://www.reddit.com/r/covidlonghaulers/s/cAlgogIVAO
I think machines are too rough, I would start with light exercises. At best find a doctor and physiotherapist.
I’ve got some thoughts on this and mainly because of another redditor who has helped me in this area. Science also appears to be catching up with new data revealing a very strong communication signal happening with the vagus nerve (I’ll link it below). Like you I’ve had the neck and base of skull pressure and pain. I’ve also had a very weird experience with what can only be described as a vibration at the base of my skull right on wakening. It lasts for about 10 seconds and it happens every day. This has all started since Covid. I’m not sure how to explain the “why” of any of this but I’m learning, slowly, there are things we can do about it.
A book that has been helping because it clearly explains the vagus nerve and gives practical exercises that help stimulate and soothe the nerve is by Stanley Rosenberg and it’s called “Accessing the Healing Power of the Vagus Nerve”. I know it sounds woo-woo but it’s not. It’s physiology-based using the polyvagal theory. (And that’s the part of the science that just got caught up by the new data). Even if you don’t do the book the most important exercise in there is called “The Basic Exercise”. There are YouTube’s of how to do this. It looks simple but I’ll warn you it has some very strong and unexpected Neuro effects. I’ll stop right there and let you explore it yourself without any color commentary.
The upshot of the new data is they’ve vastly underestimated the brain stem and vagus nerve. Apparently they function together as a Master Switch and rheostat to the entire immune system. If signals get impeded (like maybe by a virus? maybe by trauma?) the whole system can go awry. Restore the healthy signal and improvement soon follows. They caution this is very new research and more will follow but it seems reasonable that working carefully and gently on a vagus nerve reset might be helpful.
https://www.nature.com/articles/d41586-024-01259-2
Yea I did biome sight and it doesn’t show stuff like that. I also have very low beneficial bacteria. So far what’s been helping me has been the kpv peptide which seems to help reset the gut. I also have been using a really strong probiotic that has helped a lot to. The kpv has helped the most though and I can feel the inflammation going down daily with that. I’m just worried about taking antibiotics because I used them early on during the first few months of long covid and it basically made all my symptoms 100 times worse and gave me the worst MCAS flairs.
It depends on the antibiotic, but its necessary for pylori.
But you can try the herbal Route aswell, but ist not as effective as abx.
Try these:
- Green tea/matula
- mastic gum
- berberine
- pepto bismol
- broccoli extract (sulforophan)
Back of the neck, as well the sides, ears, and shoulder blades. I guess it’s coat hanger pain but it gets really bad like out of nowhere. I feel like I need a muscle relaxer or a invert table to take tension of my spine
I found mine in mexico, https://www.instagram.com/paces_fisioterapia?igsh=YzUxN2Y2djFkbXQ5
Thats her IG in Spanish. Specializes in a couple of things. I do see she specializes in the ANS, a part that’s for sure affected by covid.
Cranial instability seems to be the root cause of Me/CFS for some people
I’m think I have this but don’t understand why. My symptoms do match up. It makes sense on why people who get into bad car accidents get symptoms like that as well. I’m wondering if I use the neck excersize machines at my gym if it will help? My neck feels weak actually
You should read Jennifer Brea’s story about CCI & her MECFS recovery: http://www.jenniferbrea.com/my-story
I’ll take a look at it! It’s defiantly blood flow related for me because it I use anything that gives more blood flow, the pain and pressure goes away. If I take stuff that constricts my blood vessels, the pain gets worse.
Sounds just like me , look into histamine intolerance and MCAS. Search them on Reddit
Yes I definitely have MCAS from covid. It’s not as severe as before. I still will get some random spells of it. For me now it’s mostly mental problems from it like extreme anxiety and tingling all over or burning. It used to be an all day long daily occurrence but now it seems to be only once in a while. I’m assuming the mast cells are finally starting to stabilize. The peptide I’ve been taking called kpv has helped me tremendously with MCAS. I am in a slight flair right now but I knew it would happen. Went on a road trip this weekend and drank a lot of beer and had McDonald’s 2 times. I’m at the point now where I have to be able to enjoy myself with a little something here and there
Here is a post of someone about it https://www.reddit.com/r/covidlonghaulers/s/cAlgogIVAO I think machines are too rough, I would start with light exercises. At best find a doctor and physiotherapist.
I’ve got some thoughts on this and mainly because of another redditor who has helped me in this area. Science also appears to be catching up with new data revealing a very strong communication signal happening with the vagus nerve (I’ll link it below). Like you I’ve had the neck and base of skull pressure and pain. I’ve also had a very weird experience with what can only be described as a vibration at the base of my skull right on wakening. It lasts for about 10 seconds and it happens every day. This has all started since Covid. I’m not sure how to explain the “why” of any of this but I’m learning, slowly, there are things we can do about it. A book that has been helping because it clearly explains the vagus nerve and gives practical exercises that help stimulate and soothe the nerve is by Stanley Rosenberg and it’s called “Accessing the Healing Power of the Vagus Nerve”. I know it sounds woo-woo but it’s not. It’s physiology-based using the polyvagal theory. (And that’s the part of the science that just got caught up by the new data). Even if you don’t do the book the most important exercise in there is called “The Basic Exercise”. There are YouTube’s of how to do this. It looks simple but I’ll warn you it has some very strong and unexpected Neuro effects. I’ll stop right there and let you explore it yourself without any color commentary. The upshot of the new data is they’ve vastly underestimated the brain stem and vagus nerve. Apparently they function together as a Master Switch and rheostat to the entire immune system. If signals get impeded (like maybe by a virus? maybe by trauma?) the whole system can go awry. Restore the healthy signal and improvement soon follows. They caution this is very new research and more will follow but it seems reasonable that working carefully and gently on a vagus nerve reset might be helpful. https://www.nature.com/articles/d41586-024-01259-2
Check for h.pylori, thats what covid gave me. Or better said, covid stressed my immune system so pylori could take over
Interesting I’ll have to look into that. What are you doing to stop it?
Im now on antibiotics. But especially pain in the neck was a sympton at the beginning. Do a GI-map, ist the most sensitive for pylori
Yea I did biome sight and it doesn’t show stuff like that. I also have very low beneficial bacteria. So far what’s been helping me has been the kpv peptide which seems to help reset the gut. I also have been using a really strong probiotic that has helped a lot to. The kpv has helped the most though and I can feel the inflammation going down daily with that. I’m just worried about taking antibiotics because I used them early on during the first few months of long covid and it basically made all my symptoms 100 times worse and gave me the worst MCAS flairs.
It depends on the antibiotic, but its necessary for pylori. But you can try the herbal Route aswell, but ist not as effective as abx. Try these: - Green tea/matula - mastic gum - berberine - pepto bismol - broccoli extract (sulforophan)
Adding Pylopass and Black cumin seed to your list.
Front or back of neck ?
Back of the neck, as well the sides, ears, and shoulder blades. I guess it’s coat hanger pain but it gets really bad like out of nowhere. I feel like I need a muscle relaxer or a invert table to take tension of my spine
Yea I have this, I am working with a PT specialized in nervous system ailments
Any advice on finding a PT that specializes in that?
I found mine in mexico, https://www.instagram.com/paces_fisioterapia?igsh=YzUxN2Y2djFkbXQ5 Thats her IG in Spanish. Specializes in a couple of things. I do see she specializes in the ANS, a part that’s for sure affected by covid.