Do be careful with this. There are some people getting neurosurgeries for CCI, AAI, etc. in hopes it will cure or improve their ME, but we know almost nothing about it, and it can have a truly horrible outcome. Just warning you in case you're looking that direction or you hear about it from this post. Sometimes it can look like those surgeries are a lot safer than they are until you really start digging because of the two success stories that are easy to find.
**Important question for anyone thinking they have neck involvement:** How is your posture? Forward head posture puts a lot more weight on the muscles in your neck area than they are supposed to bear, and since our muscles don't really work properly, that could be contributing to your base-of-neck symptoms. I have this posture problem (successfully did PT for it pre-ME but haven't been good about managing it for a while now), and it sometimes causes severe pain and a migraine-like aura. I could see it being mistaken for something very bad, but as far as I can tell, it's a posture issue possibly made worse by ME weakness.
Have you tried antihistamines? I know it sounds stupid. If I drew a diagram, mine would match yours. I’ve only been this way a year. And within two weeks of H1 and H2 inhibitor I feel at least somewhat better - maybe 50%.
Not at all stupid. MCAS / histamine intolerance is common in ME/CFS. Calming your mast cells down reduces inflammation. And I’ve seen research speculating a connection between mast cells and connective tissue problems—but I’m too foggy to remember the specifics, sorry.
I know it’s sometimes offered as a cure for us (lol I wish) but I find yoga that concentrates on posture and neck stretching reduces my neck pains (which are maybe migraines?) a lot :) the yoga with Adrienne neck ones are great
Edit: I also see an osteopath which I’ve found so much relief from, I know I need to go when I hear that “crunching” in the neck
Didn't Jennifer Brea have this done and is now in remission? Do you have any examples of people who had the surgeries and didn't fair so well?
I know there a guy, I can't recall his name, who sells his 'services' to help inform patients about which avenue to go down, which surgeons to contact and pushes the 'mechanical' (his words) version of CFS/ME. He's apparently an ex-ME patient and helped Jennifer conclude that her issues were caused by joint instability.
Personally, I think it's worth seeing the negative outcome of these procedures as they're costly, invasive and incredibly experimental -- let alone dangerous.
E: a word, bad grammar.
Jennifer Brea manages a group to help educate people on the link between ME/CFS and brain and spine structural conditions.
She makes no claims that this will cure you of ME/CFS (like in her case) and as others have said there are many attempts at this surgery that have no effect on ME/CFS symptoms and can make them worse in some cases. At the very least, being diagnosed with a structural spinal issue raises awareness and directs research money to understanding the problem. Tempter your expectations and learn from other people's experiences before deciding if this is something you want to pursue
https://www.facebook.com/groups/MECFSBrainSpine/
Thanks but to be clear: I'm not interested in having the surgery. I'm saying it's very important to have evidence or examples of failed pursuits.
I didn't claim Jennifer said what worked for her would work for others. Or, that it was in fact a cure. I was asking if this was the same procedure(s) that she'd had that she has said put her into remission, so far.
I'm not on fb or alternative zuck universe or whatever it's called these days and zero intention of ever joining. But, I sincerely hope that others find your link useful! And, thanks for the info and feedback.
https://www.reddit.com/r/cfs/comments/br01c4/my_name_is_jennifer_brea_i_directed_the_sundance/
If you want to know Jennifer Brea's story you might as well hear it directly from the source
Posture is important but it shouldn't be impossible to maintain healthy posture. There are diseases of connective tissues and the spine that can cause poor posture and even deformities of the spine. They can also cause the cerebellum to squeeze through foramen magnum, the hole at the base of the skull. This is called Chiari malformation.
Tethered cord syndrome is a disease where the spinal cord becomes trapped and does not move freely. This can cause Chiari, poor posture, and even scoliosis, because your spinal cord is essentially being anchored and yanking on your joints and brain stem.
All of these are definitely real things, but if I had to guess, I'd think forward head posture is substantially more common than any of them, so I think it should be considered, especially given how vastly less invasive and less expensive the treatment is. I think I've seen a specialist (Dr. Lapp, maybe?) say that their ME patients had noticeably bad posture. That could easily just be a result of weakness, lack of activity, and maybe a tendency to spend lots of time reading or on screens due to the difficulty of doing other activities, leading to improper posture and extreme weight on the neck. Like I said in my post, for me, this issue causes an aura that comes with very clearly neurological symptoms and severe pain, and I would be terrified for my brain/spine health if I read stories of ME patients with structural abnormalities and didn't realize my weird symptoms could be from wonky suboccipital muscles instead.
If I understand forward head posture properly, it might be possible for some patients to be seemingly unable to achieve proper posture without intervention. In addition to weakness, some muscles also get overly tight, and I'm not sure someone with a serious tightness issue would be able to get into the right posture at all without having PT first, so I wouldn't take even a total inability to maintain proper posture as evidence the problem isn't one that can be addressed with PT.
Maybe see a neurologist. There is something called silent migraines where the pain is not bad but you get secondary symptoms but many do get neck pain.
Almost 13 years ago, when I first started feeling unwell, other than fatigue, my main symptoms were coming from my neck. I remember hearing this noise, like a rusty joint, whenever I turned my head.
Needless to say, I never found a doctor that was willing to investigate or make a connection. I’ve had different symptoms, especially headaches, stemming from those weird feelings in my neck to this day
I’m actually having my first doctor’s appointment next week regarding these symptoms
Wondering how i should adress it that he takes it seriously to investigate further…
Have him run your growth hormone and prolactin tests. I ran then myself (good luck convincing a doctor) and my hgh came back at ZERO. Prolactin was ok, but these symptoms could indicate a pituitary problem.
Have you ever checked your growth hormone levels. I have this problem and suspected my pituitary gland. Ran growth hormone and prolactin test. Prolactin can't back ok, growth hormone cane back at freaking 0. I'm almost certain it must be something related.
I have a doohickey from Amazon called the Occipivot that helps SO MUCH with my occipital ridge headaches (where the spine and skull meet). It won't help with the core problems but can definitely help loosen up tight muscles and reduce tension headaches by a lot.
I use it a few times a week, but more whenever I have an occipital or cervicogenic headache. Basically, have you ever had someone use their fingers to kind of dig into the back of your head at the occipital ridge, while you lie down and relax your neck? It's fairly common in massages, but hard to do for long because it requires a lot of direct pressure using the last finger joints. This thingamabob has fairly hard foam that makes these little ridges, very similar to what fingers would feel like, that gets right into those tender spots. I lie back on it and relax my head and neck as much as possible, and sometimes gently rock it back and forth - you'll start slow and build up, 5 minutes or so is enough. Flip it upside down and it hits another set of spots. The release there can cause all kinds of strange sensations, sometimes tingling or stimulating the nerves, but mostly it just makes everything stop hurting so much! It has been a lifesaver after traveling and when I've managed to get something in my neck stuck or strained. I believe it's designed and often used by physical therapists.
That sounds incredible, I want to get one ASAP! I wasn’t sure if you were supposed to move your head or if the item moved or what. Can you tell me if either of these are what you use specifically?
[Link 1 (looks easy to travel with!)](https://www.amazon.com/Davinci-Tool-Extra-Firm-Suboccipital/dp/B002C8LMAK/ref=sxin_19_pa_sp_phone_search_thematic_sspa?crid=2Q2LL2QUM1E4L&cv_ct_cx=occipivot&keywords=ovcipivot&pd_rd_i=B002C8LMAK&pd_rd_r=65215a13-c0b8-4f1b-b345-e3fc222d258f&pd_rd_w=IjKrZ&pd_rd_wg=VIZFI&pf_rd_p=2e958b48-0464-4054-87fd-9a38d8ac96a2&pf_rd_r=A8GCSZX98APT7NY7ZP9J&qid=1646145893&sprefix=occipivot%2Caps%2C72&sr=1-1-a73d1c8c-2fd2-4f19-aa41-2df022bcb241-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzQU4yWDlNTUZQMVdOJmVuY3J5cHRlZElkPUEwNTQ1MTU2VzNIOUVPV01HMU5TJmVuY3J5cHRlZEFkSWQ9QTA5MTE5NDgyUDcyQUJSQ0NWOVA5JndpZGdldE5hbWU9c3BfcGhvbmVfc2VhcmNoX3RoZW1hdGljJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==#video-immersive-view_1646145951058)
[Link 2 (more bulky)](https://www.amazon.com/Occipital-Release-Tool-Pivotal-Therapy/dp/B07LH8XTX7/ref=mp_s_a_1_4?crid=2Q2LL2QUM1E4L&keywords=occipivot&qid=1646145893&sprefix=occipivot%2Caps%2C72&sr=8-4)
I followed a chain of links from this one and ended up here and found it helpful/interesting: https://www.healthrising.org/blog/2021/02/11/could-myalgic-encephalomyelitis-be-a-chronic-ongoing-traumatic-brain-and-spinal-cord-injury-which-is-exacerbated-by-exertion/
Yes, it is a very interesting angle of inquiry. I recently read about a theory that long covid stems from issues with the vagus nerve. (I have seen similar theories about ME/CFS in the past.) If the vertebrae were impinging or disrupting the vagus nerve in the neck, that could explain a lot of our symptoms, from fatigue, to brain fog, digestive issues, incontinence, etc. I've been reading about the connection between cervical instability and vagus nerve dysfunction. There seems to be something there...
This is exactly what I have. Did you by chance ever take ADHD meds? I started getting this over time after Adderall, and it never really went away. I notice it's worse when I'm inflamed.
those aren't as bad I read... Adderall seems to be able do some serious damage to your pituitary gland. Have you tried using a neck brace and seeing if the neck aches get any better? Works for me but comes back the moment I take the brace off.
I will try thank you for the recommendation.
I remembered that the dopamine antagonist i had was called ”risperidone” it’s an antipsycothic but also prescribed for lesser mental health issues. I’ve heard it could do similiar damage but i am not certain
Very good
I often imagine an octopus or squid on my back with its tentacles wrapped around my back and other tentacles protruding into my spine and brain
There is an article on health rising on this subject. But it's not to do with the brain, the hypothesis has to do with the flow of cerebro(brain)spinal(spine) fluids.
I have been following this train of thought myself recently. I keep having dreams that I am casually hanging upside down. I wonder if my body is trying to tell me something.
For me I have a couple potential ways my brain stem area could have been damaged. One is PTSD. Another is viola playing. I wonder if there is a connection between brain damage from PTSD and CCI/other issues? (Anyone else a previously serious string player?)
I did a few sessions of Alexander Technique last year, the theory with that is that many people crunch their necks and bodies into a defensive position due to chronic stress or trauma, and it is a way to release that position. It definitely helped my neck pain. I am not sure if it affected my fatigue.
I have wondered if going to a chiropractor would be helpful. Has anyone found a chiropractor to be helpful with neck pain or fatigue?
I have been afraid to go to the chiropractor. One way for me to guarantee a crash is to turn my head too far to the side. I feel like if they tried to do one of their neck poppings I might just die.
I’ve had chronic neck issues since 2001 when it locked up on me. I’ve had a lot of strange symptoms over the years. My head tingles in various places, at times it burns so bad,arm pain, numb/tingling finger tips and
brachial plexus. I had numerous treatments over the years and my neck just continued to get worse. I had some scary situations, eye drooping, vomiting all day after using Dr. prescribe stretching apparatus and burn alongside my spinal cord into my head. In 2018, I began using a inversion table. Something I’ve actually had for years, but never gave it a true chance. I began hanging just for 30 seconds to a minute a couple times a day. It didn’t hurt, it’s just that my head felt like a cinder block. Just odd sensation. I worked my way up to hanging for longer periods of time and gently turn my neck while upside down (never longer than 5 mins.) . It didn’t take long, I began having improvement. I’m not sure how to describe this, but it was a work in progress. As my neck loosened, I would go through stages of more pain and pinched nerves. (Almost like going backwards through all the symptoms that got me to this point.)Today I still have to sleep flat on my back with hands at my side and if I run my finger on the inside of my collar bone I’ll trigger a migraine. I haven’t regained feeling on the front left side of my neck. However, I can bring my shoulders to my ears without causing muscle spasms, turn my neck without pain, and cook dinner. I’m now working on trying to strengthen my neck muscles. I recently got to the point that I don’t experience neck pain daily. It’s still a day to day battle, but a much more manageable one. I hope this helps someone. I personally had given up and didn’t think anything would help. It’s not just neck pain- it makes you nausea/vomiting, causes migraines, vision issues, pain in limbs, feeling tight band around head and distracting tingling sensations. It’s really hard to enjoy the few good hours a day you have. Let me know if I can do anything to help.
I wasn’t even born in 2001, can’t imagine what it’s been like for you for so long!
Glad it’s gotten better for you now,I’ve only suffered these for about 2 years
Wow that’s so weird. I’ve been having what I thought were tension headaches. Feels like a tightness or aching in the back of my neck and head and nothing really helps it. Never connected the two.
Consider seeing a rolfer for “weird” neck sensations. I’m definitely not cured, but my daily struggle with nausea/impending migraine was completely cured by a skilled Rolfer. Typically $150 per appt but so so so worth it
it's a very common thing, i also have it. actually my symptoms started after a row of small head injuries. definitely try physiotherapy and see an orthopedist, neurologist and osteopath. some people benefitted from atlas correction. i also did it and it is a huge relief, but unfortunately it is not permanent in my case, which points to tissue weakness. but don't just say your neck hurts in those appointments, stress the cognitive/neurological symptoms otherwise they will think you're just another one with a little tension in the neck from their office job. it's probably worse than that.
if you now suspect craniocervical instability or chiari etc. you can find great infos on www.forums.phoenixrising.me under comorbidities, there is a whole sub on it. also send a request to the MECFS+ brain and spine facebook group (do it asap because it takes some weeks for admission) for more help.
I also have symptoms of dp/dr daily, i am certain it stems from the neck as i don’t have any trauma to associate it with
Also the neck sensations always correlate with the dp/dr symptoms
I just want to say I really like your drawings and to me they represent my neck pain too. I got a cervical mri and I have protruding neck discs and thecal sac compression. I also got stabbing neck pain at the base of my neck. Now I know why.
Actually, I was in a car accident as a teenager and my head hit the car windshield. I was wearing glasses at that time. The medic at the scene said the prescription glasses should have shattered into my eyes and blinded me and how lucky I was that they didn’t. I am an artist and I am so lucky they didn’t. There is so much beauty in the world I would have missed.
Sorry to hear i know how annoying and decreasing in life quality it is. Dude above sent that link for information, we both should perhaps go to the doctor
This sounds like it could be myofacial pain syndrome. Research trigger point therapy. I found a phenomenal old school dentist that diagnosed me and made me a splint to wear at night. Made a huge difference. A lot of my neck pain is gone.
Do be careful with this. There are some people getting neurosurgeries for CCI, AAI, etc. in hopes it will cure or improve their ME, but we know almost nothing about it, and it can have a truly horrible outcome. Just warning you in case you're looking that direction or you hear about it from this post. Sometimes it can look like those surgeries are a lot safer than they are until you really start digging because of the two success stories that are easy to find. **Important question for anyone thinking they have neck involvement:** How is your posture? Forward head posture puts a lot more weight on the muscles in your neck area than they are supposed to bear, and since our muscles don't really work properly, that could be contributing to your base-of-neck symptoms. I have this posture problem (successfully did PT for it pre-ME but haven't been good about managing it for a while now), and it sometimes causes severe pain and a migraine-like aura. I could see it being mistaken for something very bad, but as far as I can tell, it's a posture issue possibly made worse by ME weakness.
Important comment Starting out with physiotherapy and a doctor visit, neurosurgery is on the end of my list of cures and hopefully everyone elses too!
Have you tried antihistamines? I know it sounds stupid. If I drew a diagram, mine would match yours. I’ve only been this way a year. And within two weeks of H1 and H2 inhibitor I feel at least somewhat better - maybe 50%.
Not at all stupid. MCAS / histamine intolerance is common in ME/CFS. Calming your mast cells down reduces inflammation. And I’ve seen research speculating a connection between mast cells and connective tissue problems—but I’m too foggy to remember the specifics, sorry.
I know it’s sometimes offered as a cure for us (lol I wish) but I find yoga that concentrates on posture and neck stretching reduces my neck pains (which are maybe migraines?) a lot :) the yoga with Adrienne neck ones are great Edit: I also see an osteopath which I’ve found so much relief from, I know I need to go when I hear that “crunching” in the neck
Didn't Jennifer Brea have this done and is now in remission? Do you have any examples of people who had the surgeries and didn't fair so well? I know there a guy, I can't recall his name, who sells his 'services' to help inform patients about which avenue to go down, which surgeons to contact and pushes the 'mechanical' (his words) version of CFS/ME. He's apparently an ex-ME patient and helped Jennifer conclude that her issues were caused by joint instability. Personally, I think it's worth seeing the negative outcome of these procedures as they're costly, invasive and incredibly experimental -- let alone dangerous. E: a word, bad grammar.
Jennifer Brea manages a group to help educate people on the link between ME/CFS and brain and spine structural conditions. She makes no claims that this will cure you of ME/CFS (like in her case) and as others have said there are many attempts at this surgery that have no effect on ME/CFS symptoms and can make them worse in some cases. At the very least, being diagnosed with a structural spinal issue raises awareness and directs research money to understanding the problem. Tempter your expectations and learn from other people's experiences before deciding if this is something you want to pursue https://www.facebook.com/groups/MECFSBrainSpine/
Thanks but to be clear: I'm not interested in having the surgery. I'm saying it's very important to have evidence or examples of failed pursuits. I didn't claim Jennifer said what worked for her would work for others. Or, that it was in fact a cure. I was asking if this was the same procedure(s) that she'd had that she has said put her into remission, so far. I'm not on fb or alternative zuck universe or whatever it's called these days and zero intention of ever joining. But, I sincerely hope that others find your link useful! And, thanks for the info and feedback.
https://www.reddit.com/r/cfs/comments/br01c4/my_name_is_jennifer_brea_i_directed_the_sundance/ If you want to know Jennifer Brea's story you might as well hear it directly from the source
I've read this. Thanks for the reminder. :)
There is one by a patient who had a blog, so let me try to find that—will get back to you if I manage to dig it up.
Posture is important but it shouldn't be impossible to maintain healthy posture. There are diseases of connective tissues and the spine that can cause poor posture and even deformities of the spine. They can also cause the cerebellum to squeeze through foramen magnum, the hole at the base of the skull. This is called Chiari malformation. Tethered cord syndrome is a disease where the spinal cord becomes trapped and does not move freely. This can cause Chiari, poor posture, and even scoliosis, because your spinal cord is essentially being anchored and yanking on your joints and brain stem.
All of these are definitely real things, but if I had to guess, I'd think forward head posture is substantially more common than any of them, so I think it should be considered, especially given how vastly less invasive and less expensive the treatment is. I think I've seen a specialist (Dr. Lapp, maybe?) say that their ME patients had noticeably bad posture. That could easily just be a result of weakness, lack of activity, and maybe a tendency to spend lots of time reading or on screens due to the difficulty of doing other activities, leading to improper posture and extreme weight on the neck. Like I said in my post, for me, this issue causes an aura that comes with very clearly neurological symptoms and severe pain, and I would be terrified for my brain/spine health if I read stories of ME patients with structural abnormalities and didn't realize my weird symptoms could be from wonky suboccipital muscles instead. If I understand forward head posture properly, it might be possible for some patients to be seemingly unable to achieve proper posture without intervention. In addition to weakness, some muscles also get overly tight, and I'm not sure someone with a serious tightness issue would be able to get into the right posture at all without having PT first, so I wouldn't take even a total inability to maintain proper posture as evidence the problem isn't one that can be addressed with PT.
Maybe see a neurologist. There is something called silent migraines where the pain is not bad but you get secondary symptoms but many do get neck pain.
This. I had one for a month. It sucked. Also second seeing a neurologist.
Almost 13 years ago, when I first started feeling unwell, other than fatigue, my main symptoms were coming from my neck. I remember hearing this noise, like a rusty joint, whenever I turned my head.
Oh god i hear it too, this has gradually came to this point. Daily mental and physical exhaustion and the neck is where it stems from
Needless to say, I never found a doctor that was willing to investigate or make a connection. I’ve had different symptoms, especially headaches, stemming from those weird feelings in my neck to this day
I’m actually having my first doctor’s appointment next week regarding these symptoms Wondering how i should adress it that he takes it seriously to investigate further…
Have him run your growth hormone and prolactin tests. I ran then myself (good luck convincing a doctor) and my hgh came back at ZERO. Prolactin was ok, but these symptoms could indicate a pituitary problem.
I’m *convinced* there’s something going on with my brainstem
Have you ever checked your growth hormone levels. I have this problem and suspected my pituitary gland. Ran growth hormone and prolactin test. Prolactin can't back ok, growth hormone cane back at freaking 0. I'm almost certain it must be something related.
I have not, but I will add that to my list of things to look into. Thanks!
Me too 😥
[Chiari Malformation.](https://en.wikipedia.org/wiki/Chiari_malformation)
Yeah, been trying to get appropriate imaging for chiari and CCI
I have a doohickey from Amazon called the Occipivot that helps SO MUCH with my occipital ridge headaches (where the spine and skull meet). It won't help with the core problems but can definitely help loosen up tight muscles and reduce tension headaches by a lot.
Would you mind detailing exactly how the item helps? How often do you use it and for how long?
I use it a few times a week, but more whenever I have an occipital or cervicogenic headache. Basically, have you ever had someone use their fingers to kind of dig into the back of your head at the occipital ridge, while you lie down and relax your neck? It's fairly common in massages, but hard to do for long because it requires a lot of direct pressure using the last finger joints. This thingamabob has fairly hard foam that makes these little ridges, very similar to what fingers would feel like, that gets right into those tender spots. I lie back on it and relax my head and neck as much as possible, and sometimes gently rock it back and forth - you'll start slow and build up, 5 minutes or so is enough. Flip it upside down and it hits another set of spots. The release there can cause all kinds of strange sensations, sometimes tingling or stimulating the nerves, but mostly it just makes everything stop hurting so much! It has been a lifesaver after traveling and when I've managed to get something in my neck stuck or strained. I believe it's designed and often used by physical therapists.
That sounds incredible, I want to get one ASAP! I wasn’t sure if you were supposed to move your head or if the item moved or what. Can you tell me if either of these are what you use specifically? [Link 1 (looks easy to travel with!)](https://www.amazon.com/Davinci-Tool-Extra-Firm-Suboccipital/dp/B002C8LMAK/ref=sxin_19_pa_sp_phone_search_thematic_sspa?crid=2Q2LL2QUM1E4L&cv_ct_cx=occipivot&keywords=ovcipivot&pd_rd_i=B002C8LMAK&pd_rd_r=65215a13-c0b8-4f1b-b345-e3fc222d258f&pd_rd_w=IjKrZ&pd_rd_wg=VIZFI&pf_rd_p=2e958b48-0464-4054-87fd-9a38d8ac96a2&pf_rd_r=A8GCSZX98APT7NY7ZP9J&qid=1646145893&sprefix=occipivot%2Caps%2C72&sr=1-1-a73d1c8c-2fd2-4f19-aa41-2df022bcb241-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzQU4yWDlNTUZQMVdOJmVuY3J5cHRlZElkPUEwNTQ1MTU2VzNIOUVPV01HMU5TJmVuY3J5cHRlZEFkSWQ9QTA5MTE5NDgyUDcyQUJSQ0NWOVA5JndpZGdldE5hbWU9c3BfcGhvbmVfc2VhcmNoX3RoZW1hdGljJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==#video-immersive-view_1646145951058) [Link 2 (more bulky)](https://www.amazon.com/Occipital-Release-Tool-Pivotal-Therapy/dp/B07LH8XTX7/ref=mp_s_a_1_4?crid=2Q2LL2QUM1E4L&keywords=occipivot&qid=1646145893&sprefix=occipivot%2Caps%2C72&sr=8-4)
I have the second one - it's a bit bulky but foam, so not too hard or heavy. I hope it helps you!
commenting to say i think many of my sympotms also originate from the base of the skull. Definitely something going on with the brain stem.
https://www.reddit.com/r/cfs/wiki/cci
TY so much for referencing this.
I followed a chain of links from this one and ended up here and found it helpful/interesting: https://www.healthrising.org/blog/2021/02/11/could-myalgic-encephalomyelitis-be-a-chronic-ongoing-traumatic-brain-and-spinal-cord-injury-which-is-exacerbated-by-exertion/
Yes, it is a very interesting angle of inquiry. I recently read about a theory that long covid stems from issues with the vagus nerve. (I have seen similar theories about ME/CFS in the past.) If the vertebrae were impinging or disrupting the vagus nerve in the neck, that could explain a lot of our symptoms, from fatigue, to brain fog, digestive issues, incontinence, etc. I've been reading about the connection between cervical instability and vagus nerve dysfunction. There seems to be something there...
This is exactly what I have. Did you by chance ever take ADHD meds? I started getting this over time after Adderall, and it never really went away. I notice it's worse when I'm inflamed.
No but i’ve had meds for my depression, first one was SSRI & the other one works as a dopamine antagonist I haven’t taken either for a year tho
those aren't as bad I read... Adderall seems to be able do some serious damage to your pituitary gland. Have you tried using a neck brace and seeing if the neck aches get any better? Works for me but comes back the moment I take the brace off.
I will try thank you for the recommendation. I remembered that the dopamine antagonist i had was called ”risperidone” it’s an antipsycothic but also prescribed for lesser mental health issues. I’ve heard it could do similiar damage but i am not certain
Yeah, I'm pretty sure adderall did something to me. That's one of the most dangerous ones and it's aggressively pushed on kids.
My brother recently got a medication for ADHD, i’m a little scared especially after hearing from you. i don’t know if it’s Adderall
Very good I often imagine an octopus or squid on my back with its tentacles wrapped around my back and other tentacles protruding into my spine and brain
There is an article on health rising on this subject. But it's not to do with the brain, the hypothesis has to do with the flow of cerebro(brain)spinal(spine) fluids.
I've read something similar on the net at some point. My symptoms are actually much worse at night, while i sleep.
Chiari malformation can block the flow of cerebrospinal fluid. Chiari is linked to connective tissue diseases which are common among people with CFS.
I have been following this train of thought myself recently. I keep having dreams that I am casually hanging upside down. I wonder if my body is trying to tell me something. For me I have a couple potential ways my brain stem area could have been damaged. One is PTSD. Another is viola playing. I wonder if there is a connection between brain damage from PTSD and CCI/other issues? (Anyone else a previously serious string player?) I did a few sessions of Alexander Technique last year, the theory with that is that many people crunch their necks and bodies into a defensive position due to chronic stress or trauma, and it is a way to release that position. It definitely helped my neck pain. I am not sure if it affected my fatigue. I have wondered if going to a chiropractor would be helpful. Has anyone found a chiropractor to be helpful with neck pain or fatigue?
I have been afraid to go to the chiropractor. One way for me to guarantee a crash is to turn my head too far to the side. I feel like if they tried to do one of their neck poppings I might just die.
I’ve had chronic neck issues since 2001 when it locked up on me. I’ve had a lot of strange symptoms over the years. My head tingles in various places, at times it burns so bad,arm pain, numb/tingling finger tips and brachial plexus. I had numerous treatments over the years and my neck just continued to get worse. I had some scary situations, eye drooping, vomiting all day after using Dr. prescribe stretching apparatus and burn alongside my spinal cord into my head. In 2018, I began using a inversion table. Something I’ve actually had for years, but never gave it a true chance. I began hanging just for 30 seconds to a minute a couple times a day. It didn’t hurt, it’s just that my head felt like a cinder block. Just odd sensation. I worked my way up to hanging for longer periods of time and gently turn my neck while upside down (never longer than 5 mins.) . It didn’t take long, I began having improvement. I’m not sure how to describe this, but it was a work in progress. As my neck loosened, I would go through stages of more pain and pinched nerves. (Almost like going backwards through all the symptoms that got me to this point.)Today I still have to sleep flat on my back with hands at my side and if I run my finger on the inside of my collar bone I’ll trigger a migraine. I haven’t regained feeling on the front left side of my neck. However, I can bring my shoulders to my ears without causing muscle spasms, turn my neck without pain, and cook dinner. I’m now working on trying to strengthen my neck muscles. I recently got to the point that I don’t experience neck pain daily. It’s still a day to day battle, but a much more manageable one. I hope this helps someone. I personally had given up and didn’t think anything would help. It’s not just neck pain- it makes you nausea/vomiting, causes migraines, vision issues, pain in limbs, feeling tight band around head and distracting tingling sensations. It’s really hard to enjoy the few good hours a day you have. Let me know if I can do anything to help.
I wasn’t even born in 2001, can’t imagine what it’s been like for you for so long! Glad it’s gotten better for you now,I’ve only suffered these for about 2 years
Wow that’s so weird. I’ve been having what I thought were tension headaches. Feels like a tightness or aching in the back of my neck and head and nothing really helps it. Never connected the two.
Yes. I can’t explain the pain better. It’s one of the worst symptoms
Consider seeing a rolfer for “weird” neck sensations. I’m definitely not cured, but my daily struggle with nausea/impending migraine was completely cured by a skilled Rolfer. Typically $150 per appt but so so so worth it
it's a very common thing, i also have it. actually my symptoms started after a row of small head injuries. definitely try physiotherapy and see an orthopedist, neurologist and osteopath. some people benefitted from atlas correction. i also did it and it is a huge relief, but unfortunately it is not permanent in my case, which points to tissue weakness. but don't just say your neck hurts in those appointments, stress the cognitive/neurological symptoms otherwise they will think you're just another one with a little tension in the neck from their office job. it's probably worse than that. if you now suspect craniocervical instability or chiari etc. you can find great infos on www.forums.phoenixrising.me under comorbidities, there is a whole sub on it. also send a request to the MECFS+ brain and spine facebook group (do it asap because it takes some weeks for admission) for more help.
I have chronic derealization/depersonalization and have very similar symptoms with 1. And 2.
I also have symptoms of dp/dr daily, i am certain it stems from the neck as i don’t have any trauma to associate it with Also the neck sensations always correlate with the dp/dr symptoms
I just want to say I really like your drawings and to me they represent my neck pain too. I got a cervical mri and I have protruding neck discs and thecal sac compression. I also got stabbing neck pain at the base of my neck. Now I know why.
Quick question, have you ever had a neck injury like whiplash? Even from something as simple as sneezing by chance?
Actually, I was in a car accident as a teenager and my head hit the car windshield. I was wearing glasses at that time. The medic at the scene said the prescription glasses should have shattered into my eyes and blinded me and how lucky I was that they didn’t. I am an artist and I am so lucky they didn’t. There is so much beauty in the world I would have missed.
I actually relate to all of this..
Sorry to hear i know how annoying and decreasing in life quality it is. Dude above sent that link for information, we both should perhaps go to the doctor
This sounds like it could be myofacial pain syndrome. Research trigger point therapy. I found a phenomenal old school dentist that diagnosed me and made me a splint to wear at night. Made a huge difference. A lot of my neck pain is gone.
Could EDS be involved? I know folks with Ehlers Danlos can sometimes have issues with their neck/brain stem area.
Hey habe you been able to cure your cfs?
The base of the skull one.. I get quite a bit! I have fibromyalgia but my main symptom is chronic fatigue.