Extremely Soft / Weak Neck Muscles?

[Jwarrior77]

It seems to me that many people who have problems with their neck complain about stiff neck/ muscle tightness. However it's the opposite with me. My neck has become unusually soft that can't be credited solely to deconditioning. My neck is extremely hypermobile ever since getting sick and my neck muscles are so soft/lax that I can literally push my fingers into my neck and feel almost every vertebrae in my neck going from C1 - C7. Ive also began getting a strong clicking sensation at the base of my skull where it meets C1. Last year I went to a chiropractor and he really messed with my neck and then a week later I got some strange illness and then bam ME/CFS and POTS developed. All this seems more than a big coincidence. I also have been diagnosed with some hypermobility not sure if it's EDS. Anyways is there anyone else out there that has weak/soft neck muscles instead of tight? Thanks.

 

[Rufous McKinney]

a week later I got some strange illness and then bam ME/CFS and POTS developed. All this seems more than a big coincidence. I also have been diagnosed with some hypermobility not sure if it's EDS. Anyways is there anyone else out there that has weak/soft neck muscles instead of tight? Thanks.

Oh brother.....

So my neck, the right side of my neck...every evening- is like disintegrating popcorn. The cracking your neck thing. Mine goes on and on and on. I have to- tell myself NOT TO crack my neck.

Most of my muscles are wasted from ME, my ligaments are very weak and I seem to be lacking much collagen...a lifetime of ME- I believe this has likely degraded collagen over time and made all the symptoms get worse.

So this is wind- AIR coming out of- the spine. Tons of wind. The right side of my body is more sick than the left, lymph is likely stagnent. I have alot of weird symptoms confined to the right side. Neurological. Numbness. Skin itches with nothing there. Swollen lymph nodes all on the right.

I've avoided chiropracters- altho maybe it would be nice to talk to a good one.

It seems like- I don't get very far investigating any topic....so two different Physical Therapist seemed to not think there was nothing wrong with- popping the neck endlessly.

And where does this actual AIR come from? The body is craving-releasing the air. Its a very odd feeling.

So sometimes when the popping the neck session is going on, I can feel my throat is closing off...

I'm think I have a mild version of CCI. But have not been able to - get tested.

 

[Rufous McKinney]

It seems to me that many people who have problems with their neck complain about stiff neck/ muscle tightness.

thought I would add that the left side of my neck NEVER does this popping. Nothing happens if I try to pop that side. Nothing. You could say that side feels stiffer.

I think we occupy bodies and Bodies are simply- not understood.

 

[maple]

I started wearing a soft collar/neck brace to bed and it makes my neck much better. Also sometimes during the day for a bit depending on what I am doing. Helps immensely.

 

[Hip]

My neck is extremely hypermobile ever since getting sick

Have you searched through the craniocervical instability (CCI) threads on this forum? Some ME/CFS patients found they had lax ligaments at craniocervical junction, leading to CCI.

 

[Jwarrior77]

Have you searched through the craniocervical instability (CCI) threads on this forum? Some ME/CFS patients found they had lax ligaments at craniocervical junction, leading to CCI.

Yes. I've researched a lot on this topic and I'm currently looking into it. My neck is in pretty bad shape at the moment. Throughout the years I've had concussions and other incidents involving my neck. I believe going to that chiropractor a year ago really messed something up as I started noticing symptoms then as well like bad exercise intolerance. I talked to my primary care about it and by the grace of God he ordered an upright MRI of c-spine and head flexion - extension. The only problem now is that almost all upright MRI places are either closed or not returning calls because of this pandemic.

 

[dyllanmurphy]

Yes. I've researched a lot on this topic and I'm currently looking into it. My neck is in pretty bad shape at the moment. Throughout the years I've had concussions and other incidents involving my neck. I believe going to that chiropractor a year ago really messed something up as I started noticing symptoms then as well like bad exercise intolerance. I talked to my primary care about it and by the grace of God he ordered an upright MRI of c-spine and head flexion - extension. The only problem now is that almost all upright MRI places are either closed or not returning calls because of this pandemic.

So what's the verdict? Now that places have opened up - did you get your MRI?

 

[Jwarrior77]

So what's the verdict? Now that places have opened up - did you get your MRI?

Yes, positive for Craniocervical instability, atlanto axial instability, and subaxial instability. Verified by three neurosurgeons who are literate in these conditions. I actually have misalignment of my c1 over c2 in the neutral position along with a subluxation without moving my head at all. My doctors think the chiro manipulations could have torn my alar ligaments. The only thing that can fix this is a fusion surgery which I'm scheduled for. A lot has happened since this post and the journey has been very difficult.

 

[bensmith]

Wow congrats jwarrior that is aamazing im sure it toom some doing. And sorry it needed doing jope
You get relief

 

[valentinelynx]

Yes, positive for Craniocervical instability, atlanto axial instability, and subaxial instability. Verified by three neurosurgeons who are literate in these conditions. I actually have misalignment of my c1 over c2 in the neutral position along with a subluxation without moving my head at all. My doctors think the chiro manipulations could have torn my alar ligaments. The only thing that can fix this is a fusion surgery which I'm scheduled for. A lot has happened since this post and the journey has been very difficult.

Glad to hear you found answers. Me, too. I started looking into this when @jeff_w wrote about his experience (MEchanicalBasis.org), thinking it was unlikely as I didn't have a lot of the classic symptoms associated with CCI, such as "bobble head" or severe neck pain (I used to get a lot of neck pain, but not in recent years). So, I was amazed to I discover that I did indeed have evidence of CCI. I, too, am scheduled for craniocervical fusion, in couple of months. Do you mind sharing your surgeon's name? I'm seeing Dr. Bolognese.

 

[Jwarrior77]

@valentinelynx Same here. The doctor I'm seeing is Doctor Henderson. I've consulted with Patel and Gilete as well and they both confirmed the same exact issues I have. Dr. Henderson is hopeful some of the dysautonomia symptoms will get better but there is no guarantee. I could probably get a second opinion with Dr. B now that I have seen Dr. H. I know their traction techniques are different.

 

[RobeAnJa]

@Jwarrior77 Any updates? I have very similar symptoms but have not come as far in getting it confirmed. Really interested in how things work out for you.

 

[dyllanmurphy]

It seems to me that many people who have problems with their neck complain about stiff neck/ muscle tightness. However it's the opposite with me. My neck has become unusually soft that can't be credited solely to deconditioning. My neck is extremely hypermobile ever since getting sick and my neck muscles are so soft/lax that I can literally push my fingers into my neck and feel almost every vertebrae in my neck going from C1 - C7. Ive also began getting a strong clicking sensation at the base of my skull where it meets C1. Last year I went to a chiropractor and he really messed with my neck and then a week later I got some strange illness and then bam ME/CFS and POTS developed. All this seems more than a big coincidence. I also have been diagnosed with some hypermobility not sure if it's EDS. Anyways is there anyone else out there that has weak/soft neck muscles instead of tight? Thanks.

Why did you see the chiro in the first place? One possibility is that the joint pain you were feeling that prompted you to go to the chiro was the prelude to what followed.

I have heard of a chiro messing with neck muscles and that turning into some crazy set of symptoms down the line, I think in a reddit thread. So it's possible that was the catalyst.

I have experienced a softening of my muscles in general. I don't have CFS though, I have some weird EDS-like or Lyme/Bartonella-like chronic condition that came on abruptly. I know CFS patients experience a similar breakdown of the muscles though, I think it's due to some catabolic process tied to immune response which explains why the same symptoms are seen in multiple conditions.