MikeO Posted August 11, 2021 Report Share Posted August 11, 2021 Hi, Does anyone get the suboccipital/paracervical 'coat-hanger' neck pain that is cited in some of the autonomic failure literature and describe what if feels like? Also are other postural muscle pains common in dysautonomia (buttocks, calfs) Quote Link to comment Share on other sites More sharing options...
cmep37 Posted August 11, 2021 Report Share Posted August 11, 2021 Yes to the coat-hanger pain, I have it all the time I am upright - it is one of my worst symptoms although in my case I am never sure if it is POTS or hEDS as my neck is very hypermobile. I constantly have an intense burning ache right at the base of my skull (not above the middle of my neck but about an inch out from the neck bones on both sides) which radiates down the sides of my neck and into my shoulders. I also get pain that runs from shoulder blade to shoulder blade and the muscles in my shoulders feel tight all the time. All this pain is relieved when I am lying flat. I have a little spiky massage ball which I roll hard on the affected areas which really helps for about 5 minutes afterwards. I also get awful stabbing headaches after being upright for a couple of hours. I don't have any other postural pain - plenty of other pain but none that only occurs when upright! I honestly don't know if postural muscle pain in other places is linked to dysautonomia but I haven't heard of many people complaining of it... Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted August 11, 2021 Report Share Posted August 11, 2021 Yup, coat hanger ache and tightness. Constantly pulling muscles in that area and when I do, it hurts so much I nearly throw up. Chiro always says I'm knotted up pretty good in that area. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 11, 2021 Author Report Share Posted August 11, 2021 Well my PT gal picked up on the tightness or muscle spasms. Very specific base of the skull, sides of the neck and shoulders. Sure i have dealt with this for a number of years just did not realize it. I do yuk if it gets out of control. As to my butt cheeks and calfs all i no is that my PVD doc says i should not be feeling this due to vascular disease Quote Link to comment Share on other sites More sharing options...
Jyoti Posted August 11, 2021 Report Share Posted August 11, 2021 @MikeO--I have no idea what is going on in your body--obviously--but about mine, I know a bit and it might be relevant to yours... I have pain in my glutes a lot of the time which I have traced to a pattern of unconscious countermeasures. In order not to faint throughout the day, I squeeze those muscles excessively while standing and over time, it has resulted in pain. I can potentially see the same kind of protective reaction happening in the calves. I too have coat hanger pain but I believe that is a blood flow issue, whereas pain in my glutei seems in my case to more connected to relentless clenching. It does recede when I am supine. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 11, 2021 Author Report Share Posted August 11, 2021 Hey @Jyotiyes i do the unconscious countermeasures and may be what bothers me .i know when i am standing i am either crossing my legs or doing the potty dance (Haha). What i am told is the muscle pain is due to the lack of blood flow. My understanding that the coat hanger pain is for the same reason (lack of blood flow) but, studies have shown other issues have been reported while in the supine position this is why i am asking. Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 11, 2021 Report Share Posted August 11, 2021 52 minutes ago, Jyoti said: In order not to faint throughout the day, I squeeze those muscles excessively while standing and over time, it has resulted in pain. Thank you, @Jyoti - you have just opened my eyes! This is EXACTLY what happens to me! Thanks so much for explaining it! Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted August 11, 2021 Report Share Posted August 11, 2021 Yeah, you definitely nailed two things here: Unconscious tensing and tightening, which we all do...which may even be necessary. And lack of blood flow. Low blood volume? I'll stretch as much as I can and hit the chiropractor (although I did go an entire year without adjustments last year). I even bought some kind of apparatus that you put around your neck and turn on and it's supposed to stimulate blood flow, but the benefits seem to be minimal so far. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 12, 2021 Author Report Share Posted August 12, 2021 Well had some bad news to day but coat hanger effect seems to be associated with dysautonomia I was hoping to validate this. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 14, 2021 Author Report Share Posted August 14, 2021 On 8/11/2021 at 4:19 PM, MTRJ75 said: I even bought some kind of apparatus that you put around your neck and turn on and it's supposed to stimulate blood flow, but the benefits seem to be minimal so far. I took my PT's advice yesterday and applied some heat to the back of my neck. Surprisingly made a difference in how it feels. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted August 15, 2021 Report Share Posted August 15, 2021 That's strange because there always feels like there's a heater on the back of my neck. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 15, 2021 Author Report Share Posted August 15, 2021 Heat is for the tight muscles in my neck. Quote Link to comment Share on other sites More sharing options...
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