whiplash to myself??

[boriss]

hello, i am in pt for shoulder and neck instability. i am 28, very weak female with ehelrs danlos syndrome, upper cross syndrome and lower cross syndrome(i think)

ive never had bad neck pain my life until last october. i had hurt my shoulders very badly and was doing strengthening on my own because i didn't have health insurance and my hands were slightly numb all of the time. i attempted to do a brachial plexus nerve glide on both sides and then my neck and thoracic spine caught on fire and i was bedridden for a day. ever since that day my neck has not been the same. i have terrible tmj now and get all kinds of knots. i get realyl dizzy and the back of my neck feels tight and then if eel like im going to faint. my left side is a lot worse, ive been told my rib is elevated on that side but i have pain in both sides.

my spine used to catch on fire whenever i sat in certain positions. this has slowly gone away. but i do get pins and needles around my upper t-spine c-spine if i sit a certain way. i was also dx'd with a severe magnesium deficiency in july .5 (1.5-2.5 range). my mag levels are normal now.

my pt just started me on shoulder strengthening exercises and chin tucks about a month ago. does it sound like im on the right path? will strengthening the rest of my body get rid of the tmj (which magically appeared when i hurt my neck)? i'm wondering how long this could possibly take to recover?? i can barely hold my head up and i'm afraid of my left rib creeping up and giving me tos. thanks.

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[MrPhysio+]

Hello Boriss,
This is a very interesting case given the various elements you describe on top of the Ehlers-Danlos syndrome.
To start, I do not know what grade of the syndrome you have been diagnosed with, but in general the type of stretching associated with a brachial plexus glide was probably a bit risky for your soft tissues.
Any high force applied to your collagen structures could compromise the tissue causing tearing, inflammation and bleeding. The following repair may then cause the fibrous tissue to become stuck together, tethered, which feels like a burning sensation the same as experienced during the initial tear. What happens is that the tissues heal by sticking to each other as a framework, then gradually the framework is taken away as the fibres separate during activity. The area between the fibres is raw to touch for a short time after separation.

It is possible that you have also irritated a branch of your facial nerve giving you TMJ pain, or you may have strained the TMJz ligaments. You will need specific deep massage to the ligaments if this is the problem. Sometimes ultrasound can help. Do you have TMJ clicking opening and shutting your mouth, or difficulty opening your mouth wide? A facial nerve problem is more difficult to treat.

The posture of the head, shoulders and neck can be addressed by a single exercise (see attachment).

The exercise has a built in progression. Mark am and pm on a calendar and put 10 secs 10 reps on the first day, then 11 secs 10 reps the second day, third day 11 seconds 11 times until you reach 20 seconds 20 times. Do the 20 seconds 20 times once a day for a week then reduce to a maintenance dose. Do not go straight to the maximum as all training effect will be lost and you will become too sore.
The exercise will mean you do not have to do the chin tuck exercise.
Hopefully the improved posture and muscle strength will help the TMJ problem as well by taking tension off the Cervical spine, but there is still a chance you will need the TMJ specific treatment.
Hope this helps.
Let me know if you have further questions.

MrPhysio+

Shoulder retraining and strengthening
1. In sitting - Place your fists on the seat at each side of your hips, and
slightly behind you.
2. Look forward keeping the chin level.
3. Lift your shoulders toward your ears, and roll them back and down
feeling your shoulder blades pinch together.
4. Keeping the shoulder blades pinched back, push down onto your
fists gently as if you are to lift your bottom off the seat.
5. Hold the position for 10 seconds, repeat 10 times at the first session,
and do 2 sessions per day.
6. Progress each day by increasing the number seconds held or the
number of holds per session on alternate days. For example: Day one
10 secs/10 times; Day two 11 secs/10 times; Day three 11secs/11
times; 12/11;12/12 etc
Over 3 weeks gradually build up your tolerance to eventually achieve
20 second hold and 20 repeats, twice daily.
Once you have achieved this level reduce to 20 seconds 20 repeats
once a day for a week.
Congratulations, you have corrected the problem by improving muscle
strength endurance & length as well improving posture. The next step is
to maintain the good work by doing the exercise occasionally.
Hints
Be certain that the shoulder blade pinch is maintained when pushing
down with your fists. Use a rolled towel each side of your hips if the
surface is soft eg a padded couch or bed.
If you feel muscle tightness across the abdomen you are leaning back
too far.
If soreness is felt through the neck you may be pushing down too hard
with your hands or not keeping the head level.
It is normal to feel exercise muscle soreness, especially when beginning
this exercise. If you are concerned regarding any symptom change,
please phone your therapist

[estherderu]

dear Boriss,

I agree with my colleague that you should not be stretching.
In my experience people suffering from Ehlers Dahlos have to learn to know their body well.
Part of this is learning to maintain good posture in rest and when active. Check your posture
for instance just before you need to lift something, but also during walking and sitting.
This is something your physio can help you with.
Important is also to learn how to "know" when you are crossing a physical border... can you
do this without harm or not?

I wish you well.

Esther

[boriss]

thanks everyone. my pt basically said she'd NEVER give me any stretching exercises. i did the bp stretch back before i even knew i had eds or else i wouldve never done it. i scored 8/9 on the beighton scale. bending over is something i'm terrible at, zero flexibility, but my hips and shoulders, neck, hands, arms etc are all hypermobile.

what drives me bonkers is i can't do basic movements either. i can't (feel my fingertips obv--

extend my arm at my side with my wrist flexed (pulls at my elbow) i have this problem for two years now, before i hurt myself doing the bp stretch
turn my head and extend my arm at my side with my arm just out at my side

and it's been over a year! does this sound like scar tissue if I have otherwise normal ROM? i used to not even be able to extend my arm at my side, wrist extended or not. turning my head to the left and right feels constricted. should i get an mri of my bp? my pt said the mri wouldn't show anything, and i couldn't make someone cut me open without evidence. but then again, maybe it's just inflammed still. it's been a year but i've only been in pt for 6 months. if it's a straight bp traction injury would that have healed by now?

last whining moment my bones are all popping nonstop. on my left side in particular which is the more constricted side.

yesterday my c1 and c2 area started to pop some and then it was itching. i'm wondering if this is bc of the muscles getting too tight and squeezing the nerves? or if its bc there's not enough muscle there? i'm also wondering how much shoulder strengthening will help with my neck pain. my shoulders are completely emaciated now, they used to be normal looking

[boriss]

my jaw does snap crackle and pop
when i go to the dentist and hold my mouth open i feel lactic acid (?) build up in my jaw
back when my neck was spasming (scalenes and scm) it was much worse and i felt like i was choking all the time.

i also have terrible overcrowding in my teeth and i wanted to get braces but now im nervous bc of the tmj.

[MrPhysio+]

Hello again Boriss,
Thanks for the extra information. With crowded teeth you may have some jaw malalignment - dental advice necessary here, but it does sound like some deep massage around the TMJ (being careful regarding potential bruising) to help alignment would help. I can discuss this further if you wish.

Have you had nerve conduction tests to clarify any brachial plexus injury? If not, seeing a specialist (neuro) would also be a good idea. The muscle wasting and lack of finger tip sensation requires further assessment. If you have also damaged a cervical disc resulting in nerve root or cord compression an MRI would be relevant.

Muscle imbalance after nerve compromise can result in uneven pressures being placed upon cervical facet joints, increasing joint tightness and noises (crepitus).
If you do not have scar tissue formation it may be that tissue adhesions following inflammatory processes have created tissue tightness. Massage for this condition may assist - but be cautious regarding your syndrome.

Overall, you need further specialised assessment to reverse the downward spiral in your condition from worsening.
Once again, I hope this helps.
Cheers,
MrPhysio+

[boriss]

thanks, i would love any tmj advice. i have been so focused on everywhere else i've neglected that area completely

i never had an mri of my BP, i went to a neuro and he didnt even suggest getting one. my cervical mri was normal but i was told by a chiro that i have a straight neck. emgs came back normal. since i hurt it a year ago i'm wondering if anything would even show up. (not to say that means nothing is there, i do believe i have some "scarring" things that are stuck). my pt felt around my neck today and i believe my first rib and didn't feel anything tho to my knowledge. she just said the back of my neck is exhausted from holding up my body

[MrPhysio+]

Hi again Boriss,
Thanks for the clarification. As you are continuing to have problems that seem to be a mix of your syndrome, neural and post inflammatory elements I still believe a review of your condition would be advisable, either with your existing neuro or a second opinion. I have to admit to some surprise that the previous MRI and nerve conduction tests were normal. There is no need for specific brachial plexus testing from what I understand of your condition. It is possible that you have had muscle atrophy due to disuse since your injury however your description points to other causes.

Regarding the TMJ. If you have a fairly high pain threshold you may be able to do this technique to yourself, but it would be best undertaken by someone with training and understanding of your condition ie not someone who knows a little bit and is scared of your syndrome.

To start: Place your index finger on your Right TMJ, then open and close your jaw whilst moving your finger until you can feel the point where the greatest jaw ligament click or pop is occurring. You may feel the bone of the jaw. Move the finger to the edges of the bone rather than over the top of the bone and angle the tip of the finger sideways into the bony edge. If you cannot feel due to sensation loss in your finger tips you will need to fiind a therapist to assist you.
Once the point of greatest click or pop is found, keep the finger in this position, stop opening and closing the mouth, then push very hard into this area for around two seconds. The technique can be very painful if done accurately.
Open and close the jaw again after a minute recovery time and reassess. Hopefully you will have less click / pop. You can fine tune this improvement by repeating the process to find another spot on the same TMJ as well as repeating it on the opposite TMJ. I would not do more than two pressures per TMJ at each session and space sessions a couple of weeks apart. You will need to gauge the pressure used regarding the grading of your syndrome to avoid bruising, although it is normal to be sore over the TMJ following pressure.
If you do not gain improvement it could be due to a number of reasons. 1. the diagnosis is different to why you have the symptoms. 2. The technique needs refining.

Let me know how you get on. Good luck.
Regards,
MrPhysio+

[boriss]

thanks! i wll try those exercises

this weekend i tried (god forbid) extending my arm at my side, now my bp/shoulders are in pain. i'm beyond frustrated. its been over a year