Looking for some hope and encouragement
 

Hello everyone
I am looking for some hope that it is possible to actually recover from this horrible disease, and any tips you can offer with regards to what else I can do to control the progression of this.
I am 28 years old and I've recently been diagnosed with thoracic outlet syndrome.
I've had the symptoms for about five years but have only recently been diagnosed. It currently seems to be progressing at a rather alarming rate for example every week there is a new symptom.

I have the following symptoms
uncontrollable shaking and twitching of muscles in both hands but mainly in left hand
I can see that the muscles at the base of my thumb on the left-hand side are wasting, although I am right-handed.
It's at the point where I'm finding it hard to for example lift the kettle
face pain and headaches
extreme neck tension and stiffness
I've been told I have a flat thoracic spine
my scapular are winging
my scalene are is rocksolid and have been for the last 12 years following an emotional trauma

My treatment plan as currently as follows

taking magnesium and vitamin B complex
taking vitamin D
using CBD drops as an anti-inflammatory
I will be starting a Pilates regimen next week under the care of my physiotherapist who has recommended getting a Pilates teacher to do the exercises with me
I have been doing Alexander technique but with limited success in applying in day-to-day life as it requires a complete change of breathing habits
I have an iron deficiency so I'm taking iron
I am meditating and trying mindfulness to reduce the general stress

I was training as a clinical psychologist and had to stop because this became so unbearable. Now instead I am a full-time private tutor which means I can control my schedule 2 to a degree however of course the positions involved in tutoring are hardly relaxing on the muscles. I'm going to be taking two weeks out of work to try and get a handle on things

I guess I just joined this forum for some encouragement that I can actually get better somehow and not be bankrupted by this horrible disease or permanently disabled which currently it feels like I'm on the path to.

Thank you so much

Z

Have you had any expert hands on /manual therapy for the tight /spasmed muscles?
I had thumb wasting for a short time, but after we got my muscles spasms relaxed in my neck, that went away..

I had severe spasms in my neck muscles and it pulled my top rib up and they got stuck, multiple PTs nor a very good DC didn't notice that, until I sought out another assessment by a PT instructor , he tried a top rib mobilisation to drop them.
They dropped 1/2 " and so much pain & other arm use limitations just went away.. I drove the 45 mins home without have to switch hands on the steering wheel.

I also had a lot of trigger points but could get most of them using a tennis ball against the wall or down on the floor. You tube shows many ways to do that..
A muscle can not be fully released if it has trigger points ..
(see all our sticky threads above the TOS main page for lots of info)

Some at home things to try-
https://www.neurotalk.org/members/100-albums422.html
Yoga corpse pose

Sharon Butler's RSI website has some gentle stretches & breathing suggestions..

Some supplements I found helpful- MSM , Grape seed extract

Pilates might be too intense (long muscle hold postures?) unless the instructor has a knowledge of rehab & injuries/pain reduction..

I'd suggest finding some very good PTs or DCs and try a few to compare , focus now should be pain & symptom reduction, before any strengthening ..

Did you have MRI of the neck area to rule out bone anomalies or other c spine issues?