Possible TOS - or Lyme...or TOS from Lyme

Girlie I have TOS. I was diagnosed with it when I was 19. I'm 53 and know that I got Lyme about 3 years ago. I have no pulse if my arms are raised equal or above my shoulders. You would have had issues long before this.

Yes the inflammation from Lyme could cause issues with the Thoracic outlet. When that inflammation goes away your issues will also.

Surgery for TOS isn't really an option. If you research further you will find that people that had surgery ended up doing that much worse. I met with a surgeon. It was the first time I talked to someone who was knowledgeable. To open up the area they have to lift nerves and arteries and then shave down bone. Way too many people are in that much more pain then they were pre surgery.

You can purchase a compression vest to help with your posture.

I still have some of my TOS bookmarks.

www.barnesjewish.org/heart-vascular/thoracic-outlet-syndrome

morphopedics.wikidot.com/thoracic-outlet-syndrome

neurotalk.psychcentral.com/forumdisplay.php?f=24&order=desc&page=3

www.doctorellis.com/index.php

These are all pre Lyme. I never did the stressed search for an answer for Lyme. We thought it was the TOS. My neurosurgeon was trying to find the right MD for me. The Lyme came as a surprise.

Barnes Jewish seems to be to best option.

I didn't mean to be dismissive. Lyme is by far the lesser of the two evils. You would have had other issues that would have started to occur in your early 40's if you had TOS. Both of my shoulders tore as if I was a pro pitcher without any specific event because of my TOS. The lack of circulation caused severe shredding of the tendons. In young athletes who do repetitive motions it's diagnosed and treated very early. A pro goalie had surgery a month or two ago.

I don't know if I agree with what your Dr said. Here's why- when we are stressed or in pain we turtle. I don't know if you have heard that expression before. That's when we raise our shoulders without realizing it. We also often bring our shoulders forward. We don't realize we are doing this. For example I've had awful headaches the last 4-5 days. The kind that feel as if someone has shoved a few ice picks in my head at different angles. I know that when I'm in pain I don't breath well and my shoulders raise yet I've still had to consciously drop them repeatedly. It's even more common to do this when we are sleeping....especially if the room is cold. While you might not think you are stressed or in pain...you have Lyme so it's a given.

Go stand in a corner (take a time out ) facing the wall. Place your hands even to your chest against the two walls, spreading your arms out from your elbows. Place one foot in front of the other, make sure to keep your head over your body. Now push back on your arms. That should give you a really good stretch. The goal is to get your shoulder blades to get as close together as possible. Repeat a few times and then switch to the other foot forward.

http://www.livestrong.com/article/346543-stretches-for-the-anterior-scalene/ You can stretch your scalenes. Do these very gently. Scalenes are kind of like guitar strings, You can send your self reeling if you over do it.

Hi Girlie

What will work for you all depends on how hard/tight your muscles are, degrees vary greatly.

My body tightened up from re-occurring night time muscular spasms I had after my bulls-eye 25 years ago- also gave me a slight case of adult onset scoliosis. I had body tension all over (facia), tight hard tendons, and tight hard muscle ends (close to tendons). I also had trigger points in big muscle "bellies".

"Standard" chiropractic and PT did not work. I was getting into "true" myofacial release, but reached roadblocks, and went back to trigger point release, but more aggressive with it now.

Problem with chronic hard muscles, (if some of yours are as bad as mine were) is sometimes they wont and dont stretch, unless you break them down with pressure- a lot of it, which is the opposite that old school medicine says to do. Real hard triggerpoint release hurts, (so good). Its not for the light hearted. Sometimes its the only option.

I used to talk a lot about Active Release Technique. Its work well, only if the practitioner has thumbs of steel. I would wear these people out. Still for the real deep hard areas, triggerpoint release work better.

I do my own TPR, till I'm black and blue sometimes. To some extent, I damage the muscle or tendons so it can start a healing process again, as opposed to being stuck. When areas start healing , I do long time stretches, when it was not possible before hand. The deeper a muscle is in layers, the harder it is to do this. I made my own trigger point release tool, its a 4 cm long X 2cm wide hard rubber mounted on a flat palm sized piece of flexible plastic. Its similar to the TPR tools that are shaped like a mushroom.

For shoulders I use my TPR tool in a door frame. I hold the "tool" about chest height in the door jam/frame (door open). I'm in the door frame bent forward at the waist pushing my top of shoulder/ levitor scapulue and traps into the TPR tool against the door frame. So I look like I'm ramming it, but pushing steady, as it softens and new nutrients finally start flowing there..Careful I dont slip, 'cause I'd go flying! LOL.

A Lacross ball works too, but its bigger so wont go very deep. A golf ball would probably damage a door frame!- but its a good size.

So after working many areas of the shoulders and arms (laying on the tool), my hands dont go numb anymore. My motor control is not all back, but its better, this might be something else, dont know yet. Would love to play a guitar better some day.

I never met a Massage therapists who can do this, hands are just not strong enough. They say they can, then find out they cant.

Without this, my life would have limited physical capabilities. I have fuctional movements, dont limp much, but still have a long way to go. I was going toward (well I had it) stiff, jittery MS like body movements, scoliosis, both frozen shoulders, sciatic pain, carpel tunnel, painful clicking neck, plantar facitis (I'll stop here).

I kind of got off the beaten path LOl. So I hope you give this some thought, if you have not. Creativity is the key and the hardest part of trigger point release. Good to try on long winter weekends. Let your body weight work with you, gravity makes trigger point release easier. Once things are loosened up, then strengthening and normal stretching will be possible.

Astro - The problem is I don't know where any tight muscles are...
Early on - prior to Lyme diagnosis, I saw four PT's, a massage therapist and a TCM Dr. They all said my muscles weren't tense or tight...etc.
I dont want to guess....
Maybe I should try another massage therapist.

Sorry Janet - you did say in your first post you had TOS at 19 and Lyme when you were 50. I missed that.
I don't carry a heavy purse and am very careful about what I lift - as Lyme has made me weaker. In fact my muscles are not firm, they are flaccid since Lyme.
The tops of my shoulders became sore after I started treatment and has gotten about 50-60% better in the past few months.

I will look at the link you posted for scalene stretches...they might help.
I don't think they can do any harm.

Girlie - It can tough to find them. Obviously deep ones are harder to detect, so you need to probe under or from the side to get access.

I've done this for years and still finding new ways to do this. And then there refered pain- an area really far away can have a small not pushing on a nerve up stream.

If you dont have knots, and its only nerves, there are stretches just for nerves called nerve glides. They helped me a little.

Wish we new a magic bullet.

Start off with what you can handle and then ice it to avoid swelling. There's no need to cause you pain. Just keep it up so that the muscle doesn't have the time to go into fight mode and became tighter.

greg- I'm trying to decide if this is TOS or 'just' lyme/bart attacking my nerves from my shoulder blade - down my arm/hand.

When it first happened - I woke up after falling asleep on the couch (this followed 5 days of 'tingling' around the left shoulder blade area.) in excuciating pain - shoulder blade area and neck - and a 'limp' left arm. No feeling in it.
ER gave me a shot of pain killer and sent me home with muscle relaxants and some other pain killer (non-codeine) - next day I was in big time pain...the pain meds didn't work.
I saw a chiro (upper cervical one) - who did a treatment and right away the neck pain improved 50% or so.
Did another chiro treatment two days later...and the pain in the neck was almost gone.
Then the shoulder blade area hurt - I was fine if I was laying down...but when I stood up, it felt like a knife in my back. Took T3's for a week. and after that went to just A.C. &C's.
It took almost two months for my shoulder blade pain to get almost better....During that time the feeling came back in my arm...but not my index finger. (the only finger affected)
The strange thing was - after two months i was now able to stand - but sitting would bother it - it would hurt in the rib area.
So, it was pretty good by August - just had a very weak left arm and hand. But, then in September, I got these vibrations in my upper back - left side area...along with more symptoms following..that's when I went looking for a diagnosis other than TOS (something that encompassed anxiety, nervous system vibrations, joint pain, muscle pain, bouts of crying spells, periodic sweats,lump in my throat, sleep apnea,etc.)

Also, I developed nerve pain down my arm...which wasn't there initially - it was numb, and then only
weak...and the nerve pain now travelled down my arm into my hand.

Got diagnosed with frozen shoulder after that ....but that didn't explain the other symptoms.

Then the Lyme diagnosis after testing Igenex Positive on the IgM WB.

Are you saying a lymph node can compress the nerves? the thing is the lymph node swelling came months after the original symptoms.

I have had mri's of my brain, cervical and thoracic spine. But no one suggested the shoulder blade area - is that something I should do?

Why do you think the angio-MRI - what is that for - the heart?

It's been 2 1/2 years since original symptom - I'm thinking a tumor would have made my symptoms worsen over time...and I would definitely know by now...don't you think?

Girlie "So, if I have pain in these 'spots' - should my husband dig his thumb in deep to release? And then what...will it get better if he does it everyday...should it be done everyday?"

Yes, have him hold it there for 15-20 seconds if you can take it. If you find a spot (it will be obvious) do this a couple times a day if you can. Eventually the muscle not only heals, but ideally the muscle memory is retrained not to remain tight.

Girlie if your Hubby isn't comfy doing it you can see if there is any one doing trigger point work in your area. A few years ago no one was doing it where I live. Now I have multiple options. If your hubby goes with you to an appt he can see how it's done and follow by example.