(((((((gentle hugs)))))))

Poor cyn, there will be other days to have other happy times. We have to keep telling ourselves this.

Anne
(having a 10 flare for no other reason than weather changes)

SOOoooo sorry to hear about your flare and rsd stuff

Prayers and hugs...gentle ones......can I have your shoes PLEASE
I am hoping and praying the POOF worked!!

love and hugs,
Victoria

the flare gods seem to knwo we are all trying to get together. Mine are nothing like what you guys describe, but definitely having one of my own. Made worse by getting things out of attic today to donate to wildfire victims....crib and all (what was i thinking???)

ah well, hopefully it will help someone at least as much as I am pained by getting it to the donation site. With any luck the return will be much better than that.

soft gentle hugs and warm (or cool if you need them) thoughts to all....

Johanna

geeze
ahhh.. the gratitude you get from volunteering
makes me feel so calm and yet determined to help others
one day I WILL volunteer
All in moderation
See, we try to do god and we flare
FLARE GODS BE GONE! POOOF!!

Hi Cyndy,

you are volunteering here with us!!! You offer your time and you are here to help us in our time of need!

and I too keep hoping to volunteer one day....I know what you mean!
love V

Sorry to hear your in a flare me to it really sucks not being able to do things with out ending up in such pain. Well i hope it doesn't hurt to long and that you will feel better.

Slept most of the day again today
Woke up at 5pm
Thats 3 days of sleeping
Its taking a while for the drugs to get out of my system.
Muscles, joints, neck, head, ears, eyes still huurt, not as bad as Fri/Sat

House help is coming tomorrow

Hubby got me the Apple ILISTEN software and was getting me the new Apple IMAC for my BD
Had a demo on it at 6pm
Had to resched...Grrrr
Doesnt my body get the hint not to interfer with life yet?

Maybe if I can get myself to my therapist, PT tomorrow
So, I can get my body and mind back on track.
Dr. J is on vacation for 2 weeks.

Cyn,

I'm so sorry you're suffering with such a flare. I hope you do feel better soon....

hi ,
At risk of sounding like a broken record, may I make some observations.
Olecyn says “Well, I took a couple of hours to clean”
Dawn3063 says” I decided to get cleaned up and do a few chores”
tshadow says “From reading your post, I wonder if the cleaning of soot, initially caused the inflammatory cycle, while you slept it grew, and then, while working with your friend (pointing where you want something, thinking, and not lying still) pushed you into a top-notch flare.”
Johannakat says “Made worse by getting things out of attic today”


I understand that it is possible that we may all have arrived at the same destination by different means but, I am absolutely positive that the condition is made worse when you use the affected arm because you have a weakened shoulder girdle. Every time you use the affected side you make it worse.

I have had my circumstances misinterpreted so often that I created a chart which shows all the things that make my condition worse and all the things that will make it better. It fits onto an A3 sheet so I can’t fit it in as a post.

What I am trying to tell people (if I can be so bold) is that the reason that this whole thing does not make sense is because it is the things you did yesterday and the way you slept last night and how much your breathing patterns have changed and how much you have been sitting down and what you did with your affected arm 1 hour ago that will all add up to how stable your shoulder girdle is and therefore how much compensatory nerves will compromise your brachial plexus when you use it now.

You might feel good enough to do something now, but because you might be using a shoulder girdle supported by the wrong muscles you will be making it worse for later.

Here is some of the text accompanying the chart which shows how the activities and in-activities of daily living make TOS person’s condition worsen. If someone can tell me how to post an A3 size publisher document I will post the pathway to the position we are in. the font in the chart is only 6. hope this helps. The document is called
Long thoracic nerve compromise, Thoracic outlet syndrome (pectoralis minor syndrome)

Injury— syndrome onset——impact of daily living activities — decline of functional capacity

And some of the text accompanying it is



The primary LTN compromise occurs within the scalenus medius at the time of the wry neck, if the person has an occupation, hobby, or sporting activity which requires frequent scapula stabilization and the person is sufficiently motivated or has a deadline to meet such that they persevere with their activity through the discomfort of this partial scapular instability, then secondary LTN compromise occurs as the LTN bowstrings across the fascial band. Tertiary compromise occurs as the vulnerable and sensitized nerve is compressed each night during sleep and when sitting on high back chairs. Difficult to explain symptoms such as chest breathing contribute to the pressure on the LTN as it passes across the ribs. The pressure on the LTN varies depending on factors such as sitting /standing, arm near / far, normal / chest breathing, normal / increased girth. The nerve can become sensitized`to the point that normal activities such as tying one’s shoelaces becomes uncomfortable. Strategies such as placing the affected arm in a sling will allow the nerve to recover so that later, remarkably, tying one’s shoelaces does not provoke the same uncomfortable feeling.
As the scapular stability lessens the sufferer’s arm feels heavier. Persevering with using the arm as the serratus anterior weakens causes compensatory muscles to work inefficiently, consequences include, rotator cuff tendonitis, pectoralis minor syndrome, T4 syndrome. The time removed between the root cause (LTN compromise) and the most apparent symptoms ( rotator cuff tendonitis, pectoralis minor syndrome, T4 syndrome) and the inconsistencies of the sufferer’s report of their varying capabilities (due to varying serratus anterior weakness) has presented what appears to be an illogical set of medical circumstances.
The physical condition of the sufferer of partial compromise to the LTN changes through the course of the day. The degree of “uncontrolled” LTN compromise through the night combined with the need for scapular muscles to compensate during the day will determine the number of thoracic muscles and the severity of their tightness causing thoracic spine hypomobility. Provocative actions performed with varying scapula stability in differing situations result in inconsistent symptoms. Through the day, pectoralis minor dominance increases as other scapular stabilizers tire, using the affected arm in the evenings precipitates strange hand symptoms with less strenuous actions than would have occurred earlier in the day. Night time rest allows scapular stabilizers to recover but means more LTN compromise and possible brachial plexus compromise as the sufferer lies on the unstable shoulder girdle. Upon awakening the compensatory stabilizers are less painful, the serratus anterior is weaker and the sufferer has strange neurological arm symptoms from lying on their arm. As the morning progresses the neurological effect of sleeping on the arm wears off only to be replaced later by pectoralis minor syndrome. The cycle of cause and effect increases in amplitude, the sufferers lifestyle becomes increasingly sedentary. Sitting and lying down add to the vulnerable LTN’s compromise. The sufferer’s activities combined with their in-activities remove the opportunity for the body to heal.



what i believe we have is---- is a nerve (the long thoracic nerve) that runs out of our cervical spine in 3 places which is compromised in 3 different ways depending on how far down the TOS pathway we are. compromising this nerve doesnt hurt a lot, so it is easy to do. however the consequences of the resultant muscle weakness are enormous. this shoulder girdle instability allows us to
1. compromise our brachial plexus
2. continually stretch and compress the 'long thoracic nerve'
3. receive treatment which is completely unsuitable for the root cause
4. have our condition deteriorate so much that sitting, sleeping, using our affected arm (daily living activities and in-activities) have a negatve affect on the nerve and so it goes on.. hope i have helped someone regards towelhorse

thanks Towelhorse...good info!

love n hugs,
Victoria