I'd just like to point out that I am not at all confused where my flare came from

Towelhorse, you definitely have and interesting perspective on the whole TOS thing. Thanks for sharing.

[SIZE="3"]Don't worry about the sleeping - I mean, let your body go through whatever it wants to, as it may be a healing process.

I remember sleeping like that on / off for three years, and really worrying about it.

Of course it's irritating to feel like you're out of it and groggy.

Now that I look at it, I really wonder if some of the TOS was causing the "sleep marathons", as I certainly had lack of sleep for quite a few days, then the marathon sleepers, etc.

I would also sweat buckets during the sleep marathons, (are you sweating buckets now also Cyn?) and I wonder now if that was a process the TOS needed.

It is so great and also so strange to READ MY OWN SYMPTOMS on this Board by other members...over and over again you guys reinforce for me that I have TOS and that TOS does these things to us, and that I'm not crazy or adding to the TOS. Lately I have felt NO support from doctors, in fact, some have been antagonzingly arguing that TOS is "just" an arm restriction...thank God for this Board, cuz the doctors would have me believe that I AM THE ONLY ONE - that they've NEVER heard that symptom(s), etc.,...I don't know if it's because they don't listen, or that they don't have enough TOS patients to know what they're doing yet. (What a horrible thought, that TOS is on the rise.)

Anyways, that sleeping sure does sound familiar, and yes, sometimes it's a med change, or part of it is, but I think some of it is the TOS.

I wish I could tolerate a ride to Dr. Jordan...!!!

I feel like I am a shut in and I will be for the rest of my life. The level of pain I live with on a daily basis is again really not worth life...and no, this is not a suicide bid, just a fact...everyone has loads of treatment ideas but they forget that I CAN'T GET TO AN APPT. without suffering pain for days afterwards...maybe even weeks...and heightened bed-disability. Yes, I've tried my therapist via phone, imagery, hypnosis, etc., but the PAIN is waaaay more powerful than these techniques so far. So many times I say to myself, just get to Dr. "x" and maybe I'll get some new treatment that will make the transport pain worth it...and it NEVER IS worth it...every doctor disappoints me with NO ANSWERS. The botox works for a few weeks - the surgery helped 10% on circulation / headaches...such small benefits, such huge pain / cost to get them.

I hate to be a downer, but the non-stop pain for the past three weeks has been really really hard....,,,,,,SIZE]

I know hope has got to be very hard to hang on to at these cruddy extreme flare times
I can't even imagine it.
soft hugs for all of you in those crappy horrible flares.

Tam,
I remember YEARS ago Dr Ellis and Peter Edgelow said I HAD to get sleep
That is when your brain repairs the body
Dr. J and Agnew also indicate how important sleep and rest is.
And my psych

I really dont have to worry about sleeping anymore.
This Ultram ER is kicking my *****
I SLEEP AT NIGHT UNTIL 10AM IN THE MORNING
However, I feel drugged ALL day and when my pain increases the Ultram kicks in like I have taken triple does of muscle relaxant.
I'm going to try decreasing it to every other day.
I still wear my lidoderm patches for my right BP and right arm nerve pain. And sometimes on my left arm.
The headaches and FM and RSD are increasing and I have no idea why
A ? for Dr. J
I know he's going to say "Well, you know TOS creates ALL these other conditions and its telling you to..."

Just get me a cloud floating through the air or a raft on an infinity wavy pool to calm the body away.

Towelhorse,
You sound like my PT.
He is adimant on restructure and strengthening the shoulder girdle and trrap muscles.
Since its the coat hanger of ALL our upper extremities
As the hips are the girdle to our lower extremities.

Vic,
Whats this with a California flare?
Trying to keep up with us SO CAL patients or what?
Seriously, I know how much demand and change travel does to your body.
Take advantage of a message and,the pool, steam shower, hot tub, ice machines and lay back listening to calming hypnotherapy tapes.

Off the compooper for the day

See YOU~ALL tomorrow!

THE MOST IMPORANT THOUGHTS I LEFT OUT:

I cannot imagine being a sole care taker in our situation.
However, I DO know that my husband gets so tired, so stressed, his BP sky rockets and then there is the anger.
Its getting to him that he HAS to do everything.
Much more lately.
It builds and builds.
He also gets immune to my pain levels.
And at times says "you know what needs to be done, so do it".
In other words he doesnt want to hear it.

There are times I wish I was on my own so I do not have to deal with his emotions and anger along with mine.
I do drive myself places now and do things on my own cause I do not dare ask him to take another day off work, more time out of his schedule to do something for ME.
Its always about ME
ME ME ME
I pay for it in more ways than one.

On the other hand he does things for me, drives me to places, takes me where I NEED to go.
But, its at HIS time!
WHen a person is used to being totally independant then dependant its a mind quest.

I JUST WANTED TO SHARE.

I am glad to know that you and Tam especially, have this forum as a safe haven, even from those we love and who love us.

Bicoastal - Yes, I am thankful that I can vent here cuz I've got nowhere else to turn. NOWHERE that has this level of understanding or acceptance.


Cyn - oh, boy, you're preaching to the choir, girl, do I recognize those situations!!!

HOW MANY times did I have to hear that I slept through my taxes last year, and that fiance had to talk to the tax guy? You'd think he wrote my taxes with a hammer, and chisel onto concrete...then licked it with gold!

The resentment, anger, depression, I think it built up to an ugly, dangerous level, but - he's gone again - there's your "poof" girl! POOF - fiance again! Mr. POOF disappearing act...although I did ask him to go if he was going to be so rude and mean all of the time...

These days I take the time when I am up to walking the dogs - to look at the blue sky, and say thanks God for such a pretty day today. Or, thank God that my home aid took the time to iron my sheets - something I'd never felt before... I TRY to be so grateful for a lower pain level, and I try to keep upbeat, to those around me, in my "real" life, cuz on the inside, I really feel like I posted. Pain is letting up a bit though...that helps the attitude immensely.

My home aid reminded me "words are powerful."

I had said, "I lost x - I am going crazy" She said, "watch out, words are powerful." I realized, she's right, I need to STOP PUTTING MYSELF DOWN. It's become a habit - again.

Cyn, when you say, "it gets to him that he (alone) HAS to do everything." Well, what would they do if they lived alone? Wouldn't they have to do everything then? That's what I don't get - really, except for doc appts., there aren't any additional tasks...just the ones that they'd have if we weren't there, which, I get, they want us to take care of them like before - but I mean, I would see fiance have to go to the grocery, and he'd get so mad beforehand, and procrastinate, etc., EVEN with a home aid he wasn't satisfied! So it really had nothing to do with the actual tasks - it was anger at the TOS and my disability.

Anyways, now I am alone (again) and since I'm basically bedridden, this will be a real trick to make a new life (again.)

Kids in OC. (Far. New empty nest syndrome.) Can't get to church or do crafts or do politic stuff or volunteer - all of those would be things I would have done in addition to my work, if starting a life over, prior to TOS. I can't do anything like that now, with the TOS being so active currently.

The house is so quiet now. I don't even have the energy / capacity to talk long on the phone (or often) as it really hurts my ears and my jaws ache at night if I've done so. My muscles are REALLY TIGHT right now. My home aid found about 5 knots on my right arm today - she tried to smooth them out. The muscles are just going WACKO.

But TOS has these ups and downs to a degree...so I just need an up time for a bit...

Hey, whatever happened to Merja, Cyndy? I haven't had any responses from her in so long - what about you? Anyone else?

Hi Olecyn,
I had 3 different rehabilitation programmes which tried to strengthen my shoulder girdle and they all made me worse. the physiotherapists saw the weak shoulder girdle and thought we must strengthen these muscles. Attempting to strengthen the shoulder girdle further compromises the Long Thoracic Nerve (this is not the brachial Plexus)
I am saying that the problem is “unstable shoulder girdle” but most importantly the solution is to “stop compromising the nerve which causes this to happen”. Trying to strengthen the muscles makes the whole situation worse.
When my situation was much worse medical examiners would ask me why I was holding my affected shoulder in a strange way, they told me to try and relax the shoulder. I didn’t realise I was holding it in a strange way. I only realised that a) there was significant weird and fluctuating pain coming from that hand and arm, b) my hand was changing colour, my hand would go cold, c) my arm was heavy etc. etc.
Some said I had TOS some said there was nothing much wrong with me and I was exhibiting illness behaviour.
As a consequence of strange circumstances which could easily have not occurred an Occupational physician proved that I had partial palsy of the Long Thoracic Nerve. Other experts previously had written that were no signs of scapular winging. This is the salient point : the compromise varies from day to day from hour to hour, the scapular stability varies accordingly, the compromise to brachial plexus behind the pec minor varies accordingly. So what I had had was a root cause which was undiagnosed, rehab programmes which made it worse, a system which did not acknowledge that TOS existed and a condition which was deteriorating as a consequence.
Research into TOS indicated that serratus anterior weakness (this is the muscle that the Long Thoracic Nerve innervates) was a consequence of TOS. They are soooooo wrong. It is a cause. I don’t say strengthen the shoulder girdle I say stop compromising the little nerve.

My condition has improved with every strategy to stop compromise to the LTN.
I no longer have cyanosis, cold hand, aching in the arm.
I rarely have the heavy arm feeling.

One of the symptoms that I hated the most was the headache. 90% of my headaches started whilst I was sleeping. I would wake up with pain from my upper back up the affected side of my neck, up the back of my head and across the top of my head and to my eyes. They made functioning very difficult. If I leant forward they worsened, if I coughed they became even more painful. I worked out that sleeping on my back was causing many of them, I slept with a top that had a bolster to stop my scapula compressing my LTN against my rib cage. The bolster is only 40% - 50% successful.
I like many other TOS sufferers chest breathe, PTs tried to show me exercises to stop this. It was evident that I chest breathed when I went to bed.
Once again through circumstances that could easily not have happened an x-ray showed that I had hyper-inflated lungs. I was prescribed pulmicort, this improved my condition.
I am now seeing a new PT, he suggested a different breathing medication, the doctor has prescribed it. I have been taking the Symbicort for 2 weeks I have not woken up with one headache in that time. My scapular stability continues to improve. Those TOS sufferers who suffer from similar headaches will understand what this is worth on the “quality of life “ scale. I understand that there might be different types of TOS, however there are common denominators, heavy arm, headaches, strange arm symptoms, difficulty being comfortable sleeping, chest breathing.

This will anger a lot of clinicians, however, if you are having difficulty visualising an open thoracic outlet and holding your shoulder girdle in a manner to accommodate this (which only made my symptoms worse) try visualising a nerve about the size of a shoelace that pierces through the scalene muscle , across the fascial bands, across the 1st and 2nd rib and under the shoulder blade and it spreads out to innervate a muscle (serratus anterior) which when it is not functioning correctly will make you arm feel heavy. The scalene muscle, fascial bands, and ribs are thought to have an affect on TOS according to the medical establishment, maybe the effect is on the LTN and not the brachial plexus. Maybe this is why the establishment are not very successful in curing TOS. If you can avoid sleeping on it, sitting in chairs which place pressure on it, using your arm which causes the scapula to compromise it, chest breathing which places pressure on it, then it will slowly recover. With all the pressures of living a life, this is almost impossible. This is the challenge.
I understand that I am promulgating theories which contradict the established theories. All I am really doing is rearranging the cause and effects,, its all the same pieces of information but in a different order.


Thanks for reading this, hope it may help someone regards Towelhorse

By the way,
why the name "towelhorse"?
Just interested.

Anyways,
I miss spoke...
My PT says NO strengthening the affected muscles and my arms
Strengthen the ones not affected to hold up the shoulder girdle and your upper body
POSTURE, POSTURE, POSTURE

You are so intricate, such an engineer of sorts when you relay information.

Question Towel -

Are you sure you are HYPER ventilating the lungs? (As in too much air???) IF so, how can that be, I mean, my chest muscles are so tight, it's hard to get a full breath in...

I find that I am shallow breathing most of the time - so much so, that I developed adilectosis - and I wonder if I get some headaches from not enough oxygen.

Then, some flares cause me not to be able to breathe at all - I feel like I am going to die from no air - and I go to the ER, which they gave me morphine and nitroglycerine which freed up the muscles to breathe.

Sorry Cyn to hijack your thread, but like you said, Towel is so detailed, and Cyn, you taught me to do the trick of laying on the floor, and making sure to stomach breathe...(good lesson.)