Hypermobility and cervical collars - any experience?

[LisaGoddard]

Having been housebound with ME/CFS for over twenty years, I was recently diagnosed with autism and I now have hypermobility assessment tomorrow! I have always been hyperflexible and at the grand age of nearly 60 I can still lots of weird things with my joints and limbs (despite absolutely avoiding any stretching exercises as it affect my joints)

Over the past week, I have been spending time wearing a soft cervical collar as a way to test out the cranial instability theory. I've found to my utmost surprise - shock- it makes a huge difference to my day. I can think clearly and I no longer feel exhausted after an hour. Why is that? Should a soft cervical collar really make such a difference? Should I mention this to the consultant tomorrow? Can I continue to wear it? (I've read that is it bad for the muscles)

Think of me tomorrow (pray if you do) as I've had terrible experiences with being dismissed by medical professionals. I really want to get to truth and remain calm in the process.

 

[Rufous McKinney]

I"m curious what type of collar you mean.

I think you should not over-rely on it: yet how to determine what is that? You don't want to lose the strength you do have.

I got a rather simple "soft collar" to try out. Unfortunately my anatomy is just not likely to cooperate.

I can't wear if for very long because its pressing on my throat and lymphatics.

 

[LisaGoddard]

I"m curious what type of collar you mean.

I think you should not over-rely on it: yet how to determine what is that? You don't want to lose the strength you do have.

I got a rather simple "soft collar" to try out. Unfortunately my anatomy is just not likely to cooperate.

I can't wear if for very long because its pressing on my throat and lymphatics.But

Thanks Rufous. My collar is stiff foam and velcro. A cheap one I could get from Amazon.
Yes, the first time I tried it I compressed my throat too much.

You mention lymphatics which is interesting.A few months ago I started doing self lymphatic drainage which has been helpful and I can hear the lymph moving when I do it.
But when I wear the collar, I don't hear the lymph moving and I don't know if that's good or bad.

 

[Rufous McKinney]

I can hear the lymph moving when I do it.

wow really?

My collar is stiff foam and velcro.

Mine is maybe less stiff, as they also have one with more rigid plastic inside it.

the first time I tried it I compressed my throat too much.

I have a short neck, and thick throat and so much for any jawline.

I look literally awful wearing it.

I think my plan is to use it primarily for Car Rides. altho I do't go on car rides very often...

I got the light weight version of this model:

https://velpeau.com/collections/neck-cervical-collar

If I had been chosen to model, nobody would order the thing.

 

[Rufous McKinney]

A few months ago I started doing self lymphatic drainage

every time I attempt to address swollen lymph nodes: I crash from any form of lymphatic movement.

I'm curious where is this place where we stop crashing? I 've never reached it.

(I happen to have a recent lymphoma diagnosis)

 

[Rufous McKinney]

despite absolutely avoiding any stretching exercises

Made the mistake of watching a vagal stimulation video. So I bent my neck to one side of my shoulder, and held it for thirty seconds and literally wiped out half my neck/shoulder and muscle for what seemed like three months for it to recover.

I will NOT be doing ANY such thing again.

 

[Rufous McKinney]

I can think clearly and I no longer feel exhausted after an hour. Why is that?

just cuiorus about your activities.

I mostly sit up in a chair. So at night, my neck gets new symptoms that come on late. (7 pm on, far more weak neck issues seems like)

How I might use the collar: looking downward for very long: that bothers my neck alot.

so drawing, or doing any artsy thing: I crash after 15 minutes.

So I thought the collar might just help with not bending my neck forward quite so much while I"m attempting to do some enjoyable activity.

 

[Judee]

I think you should not over-rely on it: yet how to determine what is that? You don't want to lose the strength you do have.

My chiropractor would say the same thing. I think he would recommend kinesio tape instead because it supports without doing all the work.

I used to use it with my Mom a lot and maybe about 50% of the time it relieved her pain at least until we could get to him or the DO.

There are videos of YT on how to use it.

Just a caution: Some brands have a strong smell on the roll but that seems to dissipate fairly soon after applying them. I mostly did her back and knees. She was MCS (chemical sensitive) like I am but that seemed to be okay for her. Not sure how closer to the face would be.

Think of me tomorrow (pray if you do) as I've had terrible experiences with being dismissed by medical professionals. I really want to get to truth and remain calm in the process.

Praying. I think we all know what you're talking about... that awful PTSD from dealing with so many arrogant doctors.

 

[Rufous McKinney]

I mostly sit up in a chair.

(that was in my prior life)

(now that I relocated, I'm getting up and down, and moving around much much more AND walking thru this much bigger house, so that has generated more ongoing PEM and its hard to manage because before I was most by myself and now I live with my daughter and her two babes.)

 

[Rufous McKinney]

Think of me tomorrow (pray if you do) as I've had terrible experiences with being dismissed by medical professionals.

"We" totally understand and I will visualizes tomorrow, that you are respected, and heard and helped with kindness.

I won't be inviting this gerontologist back.

I don't meet EDS criteria, yet something is clearly going on with all that.

 

[Judee]

because before I was most by myself and now I live with my daughter and her two babes.)

People don't always get that sometimes just being around them can PEM us. I want not to be alone but the alternative is most of the time too draining.

@LisaGoddard, let us know how it goes tomorrow (or when you've rested enough to not being in PEM from the appt).

 

[LisaGoddard]

Just an hour before my husband takes me for my appointment. Thanks so much for the supporting words. Sorry about the delayed response (time difference as I'm in the UK). So appreciate your comments.

 

[LisaGoddard]

I"m curious what type of collar you mean.

I think you should not over-rely on it: yet how to determine what is that? You don't want to lose the strength you do have.

I got a rather simple "soft collar" to try out. Unfortunately my anatomy is just not likely to cooperate.

I can't wear if for very long because its pressing on my throat and lymphatics.

Hi Rufous, My collar is actually softer looking than the one you posted. See the one I bought https://www.amazon.co.uk/dp/B004GJZ7SQ?ref=ppx_yo2ov_dt_b_product_details&th=1

I bought a cheap one because I thought it was absolutely unlikely to have any effect so not worth spending much. I don't get neck pain although my shoulders are often tense and can be painful, even when I am not at all tense.

 

[LisaGoddard]

every time I attempt to address swollen lymph nodes: I crash from any form of lymphatic movement.

I'm curious where is this place where we stop crashing? I 've never reached it.

(I happen to have a recent lymphoma diagnosis)

You have lymphoma! I am so sorry to hear that. I am still hoping that you meant lymphodema (build of lymph fluids) and not the cancer. I know people with ME can get both. Let me know please because I will thinking of you.

The first few times I did the lymphatic self-drainage I didn't hear anything, but as I got more proficient (it takes a very light pressure and pulling movement which to time to master), I can hear it draining near my ears even when I am doing my legs and feet. It's a sort of creaking noise.

I totally understand about crashing when you live in a bigger house. It actually makes a really big difference. The additional walking takes a toll. So does any noise and interaction. As Judee mentioned, we don't want to be isolated and lonely, but the cost of interaction is...well costly.

Just to say I sit in my chair with my legs raised and leaning back in a semi-prone position. After an hour or so, my brain is too foggy to think and I am overwhelmingly tired. With the collar, I can go for five or more hours and still not feel tired or foggy. I am just using the collar for three days a week.

Sorry about the way your collar looks. They are not pretty or eye-catching (in a good way). The only plus for me is that it hides my wrinkly, sagging neck.

 

[LisaGoddard]

My chiropractor would say the same thing. I think he would recommend kinesio tape instead because it supports without doing all the work.

I used to use it with my Mom a lot and maybe about 50% of the time it relieved her pain at least until we could get to him or the DO.

There are videos of YT on how to use it.

Just a caution: Some brands have a strong smell on the roll but that seems to dissipate fairly soon after applying them. I mostly did her back and knees. She was MCS (chemical sensitive) like I am but that seemed to be okay for her. Not sure how closer to the face would be.


Praying. I think we all know what you're talking about... that awful PTSD from dealing with so many arrogant doctors.

Thanks so much, Judee. I have never heard of kinesio tape before - that sounds wonderful! Thanks so much for sharing that.

 

[LisaGoddard]

Feeling calm at present - thanks for prayers and thoughts. Really good to have the community support.
Will let you know how it goes!

 

[LisaGoddard]

Feeling calm at present - thanks for prayers and thoughts. Really good to have the community support.
Will let you know how it goes!

"We" totally understand and I will visualizes tomorrow, that you are respected, and heard and helped with kindness.

I won't be inviting this gerontologist back.

I don't meet EDS criteria, yet something is clearly going on with all that.

Hi, Just back from the appointment and pretty exhausted, but I wanted to share.
It didn't start well as the consultant asked what can he could do for me, and I said that I have hyperflexibility and wondered if that had affected my health. He said casually 'Probably not'. (Deep breathe, remain calm, I told myself)

But looked me over and decided to the contrary. He diagnosed me with hypermobile Ehlers Danlos Syndrome and he also suspects vascular Ehlers Danlos Syndrome. He also diagnosed POTS and suspects dysautonomia.
He also noted from my files that my bloods in the recent past show that I have an autoimmune disease and was surprised my doctor hadn't picked that up.

Wow! I left the house no explanation of my ME/CFS and I may have a spectrum of explanations.
Too tired at this point to feel much. or anything really.
Thanks so much for thinking and praying for me!!!! It helped knowing that and being part of the ME community.




He diagnosed

 

[Rufous McKinney]

The only plus for me is that it hides my wrinkly, sagging neck.

I thought I;'d be able to hide my jowls neck better. Oh WELL.

Let me know please because I will thinking of you.

thank you @LisaGoddard ...I was recently diagnosed with low grade B cell follicular N-Hodgkins Lymphoma. For now there is no treatment. It's a watch and wait type of thing. I don't have a bunch of more intense symptoms that might suggest I need treatment.

But my lymph nodes, that I didn't even know I had, can swell up considerably. And so after putting heat on one, I was unable to see out of my right eye for several days and SO sick. From whatever is stored up there.

The additional walking takes a toll. So does any noise and interaction.

its really HARD. My bedroom is now 80 feet from the kitchen (instead of 20). Forgot my water glass. Left the phone charger. Need a sweater.

Just interacting with my granddaughters for extremely brief moments of let's laugh and smile: its so tiring.

As I seem to be considerably run down, more tachycardia shows up.....how disconcerting.

 

[Rufous McKinney]

He also noted from my files that my bloods in the recent past show that I have an autoimmune disease and was surprised my doctor hadn't picked that up.

Wow.

KUDOS

GREAT JOB- not reacting to his first comments.

But looked me over and decided to the contrary. He diagnosed me with hypermobile Ehlers Danlos Syndrome and he also suspects vascular Ehlers Danlos Syndrome.

alot of discussion recently, on the connective tissue connections with all this. Other threads about it etc.

You should just rest up from all this.

 

[Rufous McKinney]

I now have hypermobility assessment tomorrow!

what type of doctor did you see?