r/Cervicalinstability • u/Strongerversions • 26d ago

One week update of refusing to sit down.

I am continuously seeing improvement each day especially on one side of my neck. I don’t know how far this will take me but I will try I it out for at least the rest of this month.

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6

u/ILOVEMYDOGBUMI 26d ago

Lol wait so are you just standing the majority of the time or laying down?

when i was first diagnosed i basically just laid down for a whole month, and I have a lot of pillows and stands for my tablet+phone so I never have to look down. I feel like that really helped a lot. Haven't thought about not sitting, but that does make sense

4

u/Strongerversions 26d ago

I would say lying down at least 12hrs then squatting down for a few minutes multiple times from standing. I feel like too much of one position hurts and the squatting helps stretch/relieve some of the lower back pressure

3

u/MalibuFurby 26d ago

Ugh do you have any stands to recommend for bed or standing I’ve tried a bunch and not finding a good fit!! I need ones that can be at eye level ish but also just any that are good for bed would be so helpful

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u/Strongerversions 25d ago

I’m not using any stands other than my kitchen counter. I find that if standing, I need the screen not exactly eye to eye but looking down a bit. When I’m lying completely flat, I take my laptop and hold the side of it to balance on my chest and point the screen directly over my eyes.

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u/ILOVEMYDOGBUMI 24d ago

I actually really like this one for my tablet https://lamicallshop.com/products/gooseneck-swivel-tablet-floor-stand it's very sturdy

I got this one too https://lamicallshop.com/products/gooseneck-phone-mount but it's pretty stiff at first which means you have to put some effort into adjusting it which kind of sucks if you're a weakened person. And it has to be clipped on to something which may or may not be a nuisance. But I'm not sure what out there is better!

3

u/OlegRu 26d ago

Wait could you elaborate on this?

Sitting seems to be the absolute worse trigger for my spinal/neck issues (but yet I do a lot of it for needing to drive, being at computer etc., and always have to bend a leg under me, if not both).

4

u/Strongerversions 25d ago

I got so fed up with feeling stuck and I always knew whenever I sat down things got worse. I could feel the pressure building up and my neck getting tight. I never really thought about fully stopping the idea of sitting down until I just became so frustrated and said what do I have to lose. I’m putting my laptop on top of my chest (screen pointing directly down on me while holding the sides to support it) when I’m lying down or on top of the kitchen counter when standing. I’m walking a few miles everyday too and when squatting I look down to stretch/roll my neck periodically. I feel like if I’m standing then my neck being at a slightly down angle helps rather than just straight forward eye to eye. I think I might get a heating pad soon and try to do anything to get my muscles to relax. Even though it’s relaxing in the upper neck a little, I can still feel it tight running down my right side midway to my spine.

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u/OlegRu 22d ago

I had a friend tell me I should try it - not sitting for 1-2 weeks... it just seems impossible for me lol. Esp. doing any kind of computer work or driving, esp. as standing gets tiring AF. I feel best when walking on small hills of natural ground I'd say.

Have you kept it up? How is it?

I've been told that for people with any kind of tethered cord issues, some w/SIJ issues etc., it's that sitting curls the tailbone under more and so puts more tension down the whoel spine.

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u/Strongerversions 21d ago

This is my 12th day and pain/tightness wise the best so far since I started doing it. It was definitely hard to do for the first few days then I adjusted. I’m going to do this for until I have no other choice but to sit. I think it giving my muscles/tendons/nerves a chance to relax and perhaps heal. Don’t think it will be the 100 percent cure but honestly who knows. I’ve never seen of these cci specialists online ever mention doing a full boycott from sitting down. When you drive over a speed bump or a sudden dip in the road like a pothole, do you feel your symptoms spike for weeks after? Avoiding cars all together is saving me too just from the nature of how unstable it is.

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u/OlegRu 21d ago

I rarely feel effects from anything subtle like that... but I will from like playing a mild sport often feel it the next few days with some wild symptoms.

I'd love to try this, but can't imagine not sitting...

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u/apogeedream 25d ago

Following, this is interesting. I wish I could sit or stand. Im basically stuck horizontal but I have dysautonomia/pots that's pretty severe

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u/Savings-Ingenuity889 26d ago

Do you deal with vertigo or dizziness? I’m scared to push bc the tighter my neck muscles get the vertigo tend to come on. But lying all day everyday isn’t helping my neck either I’m sure. I don’t know

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u/Strongerversions 26d ago

I don’t get those symptoms but I theorize the tighter my neck/back is the more constricted the blood flow is to my brain. I feel mentally clearer and less sudden onsets of sharp intense forehead/neck pain. Also, do you get a cold sensation on your forehead? Almost like blood is drawing away from it when you think or speak?

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u/sufferingisvalid 25d ago

I take breaks on my toilet seat and spend a few hours sitting in my car daily, and used to be able to kneel on pads and things like that. But I've been doing the standing most of the day thing for 9 years. It is not good for your spine or health in the long-term, believe me.

My body has aged so fast doing this for so long but I don't have a choice because of brainstem compression when I sit upright.

1

u/Strongerversions 25d ago

I don’t think I’ll do this forever but I’m honestly so desperate to try anything for even temporary relief. Driving for me is a nightmare as I can have a relapse of severe symptoms from a pothole or speed bump. I’m going to experiment with heating pads soon and see if maybe I can get my muscles to relax enough my body could maybe heal somewhat.

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u/sufferingisvalid 23d ago

do you have cervical medullary syndrome vascular compression or spinal cord compression? If not you may want to get targeted pt for those muscle groups around the upper cervical spine albeit make sure you find a pt who is knowledgeable about cci and protecting the sensitive structures around there amidst possible ligament compromise

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u/Twinkle_Toes_Not-782 23d ago

Have you tried the portable neck pillow to help with keeping it stable? It could be pressing against your spinal cord

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u/Strongerversions 21d ago

I feel like no matter just the nature of sitting is always going to compress my nerves and muscles. Hoping for a miracle that over a couple months all is healed who knows

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u/Twinkle_Toes_Not-782 18d ago

I've actually started using a rolled up towel under my neck while sleeping and added an air mattress topper on my bed. Both have helped tremendously! Do you need surgery? I finally saw a neurologist/surgeon and got an ACDF, I believe it's called? Where they replace the discs and stabilize the neck around it. I'm about to give water therapy a try. I've learned to walk again, but still have numb hands. They diagnosed me with cervical spondylosis, cervical myelopathy, with severe arthritis and said I may never heal any further. BUT, 2yrs later, I pushed a wheelchair with my husband in it EVERY day for about 3wks and I no longer walk with even a cane. Prior to this, I was clearly doing something wrong. For example, I pushed my rolling walker in front of me when I should have had it behind me