Pattern of neck pain in CCI etc

seamyb

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My pattern of neck pain is as follows, I'm just wondering does it sound typical of CCI or chiari malformation etc, or if it sounds quite unlike it.

Firstly my neck pain is like no other neck pain I've had. It's not like the usual pulled muscles or having been slept on weird. Having said this, I've had pain in numerous places because of CFS which is unlike any other pain I've had. It feels like it's around my spine, where the back spine meets the neck spine. It's not excruciating pain, but it feels like it should be worrying pain, like my head might fall off if I move too fast.

The pattern of pain - It is worse in the morning when waking and for a while after waking. As the day goes on and I'm up for longer, it gets better. Rarely is it an issue at night and, if it is, it is usually very mild.

Thanks to anybody who can shed some light on this.
 

nerd

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I have sorts of a fibromyalgia pain at my whole back, everywhere signaling out of the spine. It's bad in the morning and gets eventually better. I'm not sure if this is really fibromyalgia though, it might also be a connective tissue issue. But when pain/symptoms come in the morning, this reminds me of rheumatic pathophysiology, so of an autoimmune reaction. Anyone else recognizing such a pattern, that it's dominant in the morning?
 

Learner1

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My pattern of neck pain is as follows, I'm just wondering does it sound typical of CCI or chiari malformation etc, or if it sounds quite unlike it.

Firstly my neck pain is like no other neck pain I've had. It's not like the usual pulled muscles or having been slept on weird. Having said this, I've had pain in numerous places because of CFS which is unlike any other pain I've had. It feels like it's around my spine, where the back spine meets the neck spine. It's not excruciating pain, but it feels like it should be worrying pain, like my head might fall off if I move too fast.

The pattern of pain - It is worse in the morning when waking and for a while after waking. As the day goes on and I'm up for longer, it gets better. Rarely is it an issue at night and, if it is, it is usually very mild.

Thanks to anybody who can shed some light on this.
You may find this helpful, written by one of our members:

https://www.mechanicalbasis.org/
 

Woof!

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Have you been evaluated by a good physical therapist (ideally one who knows dry needling)? The best PT for this is both technically skilled and intuitive when it comes to knowing where you need the most help. Dry needling has been a life-saver for me. When the tiny needle goes into a problematic muscle, the muscle grabs the needle and gets real bitchy for a second, then it gives up all its spasming. The feeling is a wonderful one, and I've had dry needling done all over my neck, back, legs and torso.

Let me emphasize that part about working with the right PT. I've been to 3 for dry needling in different parts of the country. One was completely non-intuitive (no help at all). One was so-so (a young man, he was just learning). And one was my life-saver. God bless her.
 
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The pattern of pain - It is worse in the morning when waking and for a while after waking. As the day goes on and I'm up for longer, it gets better. Rarely is it an issue at night and, if it is, it is usually very mild.
Anyone else recognizing such a pattern, that it's dominant in the morning?
This is the pattern of neck pain I had with POTS, although I imagine there are other explanations for this pattern as well.
 

nerd

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I even had car accident at 18 months. No injuries they said.
I also had a sports incident during my childhood that affected my spine. I didn't know at the time, no physician checked it or took the pain seriously. Later in life, MRIs showed scoliosis (deriving from a single spot) and a lower disc prolapse, which was responsible for the punctuated pain I had as a child.

But this was a very different pain from what I experience these times, which feels more like something under my skin is burning everywhere over my back.

By the way, I had neck pain whenever seizures were about to happen.
 

lenora

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Well, @nerd....burning pain is usually associated with conditions of the nervous system, or damage to it. I've lived with it for approx. 35 yrs. now. Not much fun.

Is the pain suffered a cape like pain...meaning that it covers the upper body like a cape. FM tends to be in many places and yes, burning pain can accompany it.

My neurologist tried dry needling on me many years ago. As hopeful as I was, nothing happened. Acupressure has been good, although you really have to pay attention and know what you're doing. Acupuncture, at least 3 different times for the full treatments never helped me.

I was on fentanyl patches for a number of years. Low dose I may add....and I took frequent vacations b/c I'm one of the people worried about addiction. Still, I never had any trouble with it and somehow combined with another pain drug, it seemed to have a good effect. Due to the FDA crackdown, I'm off fentanyl forever now...I refuse to go on any drug where I'd be left stranded once again. Personally I feel the two drugs worked synergistically....not just one or the other.

I'm once again living in constant pain, insomnia and far too many problems to even mention. However, I'm also 74 yrs. of age.

One learns that you can have all the testing in the world, but you'll still find few to no answers unless it's something obvious. I would suggested that people follow research....Pyrrhus is great about putting the most up to date info here for us to see. But just knowing you have something doesn't mean that it will be healed, but the possibility is always there, and especially if you're young, follow it up. Yours, Lenora
 

Woof!

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@lenora,
Dry needling is best done by physical therapists, since they have specialized training in muscle groups that your neurologist wouldn't have. Look for a PT who has a good reputation specifically for dry needling.

Someone who knows what they're doing and who has good intuition won't even need to ask you what's hurting. They'll know simply by how you walk in the door. :)
 

Woof!

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I have sorts of a fibromyalgia pain at my whole back... It's bad in the morning and gets eventually better. Anyone else recognizing such a pattern, that it's dominant in the morning?
The first place I would look in this case is your mattress and pillow. Are they supporting you in all the right places? Myself, I love my inflatable (and therefore adjustable) Sleep Number-type mattress. When it comes to pillows, I swear by my D-Core orthopedic pillow:

https://www.blowoutmedical.com/core...ogle&msclkid=76743d71a6af141bcf405d845fc119c9

I have three D-Core pillows in different sizes. A small one for travel; one for when my neck need a thinner one, and one for when I need a thicker one. I LOVE them! I also cover my mattress and pillows with dustmite covers that are changed every 6 months, since I have strong dustmite sensitivities that greatly affect my sleep and how I feel in the morning.

(BTW: I had a horse roll over my head when I was 17, and I've got lots of neck issues if I'm not super-careful about how I sleep and hold my head. When things go out of whack, that's when my dry needling angel (and nothing else) sets things right.
 

nerd

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The first place I would look in this case is your mattress and pillow. Are they supporting you in all the right places?
Good point. I have an orthostatic pillow, but my bed really needs to be replaced. I intend to move hopefully one day and I I'd like to buy a new bed at my new place, wherever this will be, but I'm not sure what bed might be the best. I'd prefer a water bed because of my mite allergy. But water beds are expensive and also quite soft afaik, and my existing bed is already too soft I think. I don't really know what's best for my scoliosis either so that it doesn't get worse. Probably something harder as well.

Regardless, I don't think that this kind of back pain has anything to do with it. But I think there might be a connection to the neck pain. Whenever I had seizures with neck pain, I couldn't use my orthostatic pillow, either it was before I've bought it, or because I didn't bring it with me. So I agree, the pillow might be important when it comes to neck pain. I still have some neck pain occasionally with the pillow, but I think there is an improving signal when I use it, looking back many years.
 

Woof!

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I'm not sure what bed might be the best. I'd prefer a water bed because of my mite allergy. But water beds are expensive and also quite soft, and my existing bed is already too soft I think.
Definitely check out the basic Sleep Number bed, then. You can adjust softness and firmness as you need it...primo. I have the top mattress only, placed atop a plywood surface. I've had the mattress for 21 years now (covered at all times with dustmite covers), and you'd never know it was over a few months old. They're priced high, yes, but when you know you can get 20+ years of good life & support out of them, they're worth it.
 

lenora

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Hello @Dr.Lynne.....I'm in the process of buying a new mattress (again) and after a whole lot of looking online, trying to remember everything that hurts and the fact that we have an adjustable king sized bed (twin mattresses b/c of the size...I don't like that), I finally decided on the Satvaa Zenhaven. You can buy one with a bladder (dial softness & firmness) but decided on the latter.

@nerd.....this is supposed to be good for those with scoliosis, also. It's very difficult to find a mattress that's "just right" and is becoming more so by the day. So many, many choices and I could have read a set of encyclopedias in the time it has taken me to collect the info I have. So I hope this is the right choice...fortunately they'll take it back if you pay $99/mattress and return it in 180 days. I don't know if it's right or wrong, and I think we all have different problems and pain. I do also have FM and must try the dry needling approach. If I can possibly fit in one more appt. that is!

The pillow looks interesting and since I'm buying pillows anyway, I think I'll order this and hope that it's the right type for me. That's another thing that has become impossible today...whatever happened to just pillows and mattresses? You almost have to take out a mortgage to buy a mattress, it seems. Of course everything is complicated with the mechanical bed itself. Good to have for an evening together and my husband loves it, but I definitely need another mattress. Just me, I'm sure.

I think you'll find the world of mattress buying far more difficult today than it used to be, unfortunately. I also have a lot of allergies, so I'm always on the lookout for organic materials, covers, etc. Is there anyone alive who doesn't have them today? Mine are much worse when I'm in bed, so mites could be in the sheets & coverlet. Most probably in the fan and a/c vent (which we've had cleaned out). I"ll let you know how this works out....so our money is spent on mattresses instead of cars (just about!). Yours, Lenora.
 
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which feels more like something under my skin is burning everywhere over my back.
sounds more like nerve, fibro type pain.

during some acute ME episodes, I've been uanble let hte shower water hit my spine- burning too intense. I have to get a new shower head, I can't handle mine. (needles shooting at me).

I get intense back pain from standing too long. After a while- at some point I've been standing too much and my muscles all go off = in SCREAMING pain I think tied to my posture troubles and spine defects.
 

Woof!

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Hello Mine are much worse when I'm in bed, so mites could be in the sheets & coverlet. Most probably in the fan and a/c vent (which we've had cleaned out).[/QUOTE]

[USER=33446]@lenora
, the most common spot for dustmites would be your pillows and mattress, naturally, but don't forget how many thousands (ugh) can live happily (for them, not us) in any curtains or carpeting you have. Anyone having trouble getting restorative sleep should give dustmite/bedbug pillow & mattress covers a try ASAP, the same with washing any curtains they have in unscented detergent. If that helps (and you'll know quite quickly), it's time to change out your carpeting for a clean, carpetless, easy-to-swiffer floor, too.

It's gotten to the point where I always ask if non-carpeted rooms are available at hotels when I travel. Most of the time they're not if I'm staying at a Hampton Inn (the only chain that doesn't use scented cleaners that make me sick, so they're my #1 choice), but occasionally I can find a boutique hotel with wood floors and unscented products that works well, too. :)[/USER]
 

lenora

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Hello @Dr. Lynne....Yes, we have wooden floors, and wood shutters and blinds that block out the light. The things I can think of involve cleaning fans more often and washing the coverlet more frequently.

What type of covering do you use on your mattress? I'm going to try the pillow you recommended, but did you also buy a cover for it? I've used unscented detergent ever since my shingles outbreaks. Everything perfumed is verboten around here. Clean bedclothes twice/wk., wood floors everywhere except in the upstairs area, which we don't use....and shutters that are frequently cleaned. The allergies become more of a problem each year.

My husband who suffered from them from his late teens is finally improving at age 77. He tried every therapy known....the meantime, mine continue to downslide. The body is interest, I'll say that for it. Thanks. Yours, L.
 

Woof!

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What type of covering do you use on your mattress? I'm going to try the pillow you recommended, but did you also buy a cover for it?
Hi Lenora,
Both the pillow and mattress covers I use are the Allerease brand of dustmite/bedbug covers, and I add new covers over the old ones every 6-7 months. I get mine at Walmart, but that said, you can also find them online:

https://www.amazon.com/AllerEase-Wa...rease+dust+mite+mattress+cover,aps,195&sr=8-6

When it comes to the D-Core pillows, if you like lots of pillow under your head, get the large one. If you're a smaller person who likes not-too-much pillow under your head, get the medium one. You'll find the right and left sides of the pillow are different (for flexibility when side-sleeping). I love this feature, because I want more pillow under my head on some nights and less on others (has more to do with my ability to breath than my neck, which is still witchy 4 decades after having a horse roll over it - my fault, not his). Lynne