THORACIC OUTLET SYNDROME RHYTHMS

“I woke up this morning, my arm was worse than it had been for quite some time, I must have slept on it, but I desperately wanted to finish the water tank stand.”

During the course of my injury I have been asked what causes the symptoms to worsen and what will make my condition improve.
Quite clearly, some occupations cause the condition to manifest itself more frequently than others. These occupations require frequent and sustained use of the arms in front and / or above shoulder height. The provocative tests for TOS involve the use of arms in front and / or above shoulder height, however the TOS sufferer will describe uncomfortable but difficult to define symptoms when they are sitting, lying down, bending to the floor or twisting. The range and frequency of symptoms change as the condition progresses. The occupation may not cause the condition however it will not allow the body to recover.

An understanding of how normal daily living activities will cause the condition of the sufferer to deteriorate is central to finding a cure.
The condition causes the sufferer to feel quite ill, be less active and spend more time lying down. Lying down gives respite from some of the symptoms but has negative effects. Sufferers sleeping whilst chest breathing, on an unstable shoulder girdle, on an arm which is painful and on an upper back with muscle spasms precipitates other less recognised consequences. Medication to allow sufferers to sleep through the negative effects of lying on the affected areas ensures a worsening of symptoms during the awakening hours.

Rehabilitation providers react to observations of physical weaknesses and postural abnormalities with strategies which do not address the root cause.
If the TOS body has any chance of recovering, a lack of understanding (impatience and high expectations) by all parties, pecuniary pressures from employers and insurers are issues that need to be dealt with successfully.

The situation of TOS is not a simple one. There is a root cause and the body’s reaction to the root cause with symptoms related to the symptoms rather than the root cause. The body reacts to the reaction with new symptoms and so on. This causes complicated layers of physical consequences with difficult to believe layers of pain. Shoulder girdle instability causes real shoulder pains and “unreal” pain down the affected arm as the nerves are compromised in three or four possible locations. Lying down and not using the arm may cause the real pains to subside but might cause the “unreal” pains to increase. Lying down in an alternate position might cause the real and “unreal” pains to subside but will be causing the root cause problem to worsen (in my situation scapular instability).
AND!!! I think the real trap…
If your shoulder is sore you won’t sleep on it. Therefore it gets better; when it is better you inadvertently sleep on it, so it gets worse, so you don’t sleep on it. Etc. etc. this is your subconscious doing what you do during the day time. You don’t feel too bad so you clean that floor which has been annoying you, this makes your arm sore so you rest it, it gets better, so you do that thing that you have been wanting to do but couldn’t , etc.etc.

A most remarkable thing about this TOS situation is that some commentators condemn the sufferers as malingerers; it is however, the motivated people who are most likely to be affected (musicians, athletes, hardworking persons,) as they can not wait to recommence what they want to be doing, and therefore create their own downward spiral. I once saw a program on TV where indigenous persons trapped monkeys by placing nuts in hollowed logs that had access holes.The access holes would allow the monkey to reach in to grab the nut but would not allow the hand of the monkey with a nut in it, to be retracted. I believe that a TOS person must let go of their high expectations before they will have the patience to allow their body to recover.

This is the conundrum, how do you rest without making yourself worse, make a living, keep your employer and insurer happy, be a good partner and parent and do some of the things that you enjoy for purely selfish reasons? It makes it all the more difficult if you don’t know what is wrong with you, three different specialists have three different diagnoses and there are some lurking around in the background saying there is nothing wrong with you!

My circumstances have shown me the downward spiral of physical condition that can occur after suffering a wry neck.

There were times when my condition adjusted positively, I could not resist the temptation to take advantage of the improvement and subsequently my condition would worsen, I would be further down the chasm and very much more frustrated.


The rhythms of TOS appear. Feeling bad ---rest ---feeling better---increased capacity--- either you or the person writing the medical certificates increases the workload---feel worse---do more damage to the root cause of the problem---rest--- increased capacity---feel worse----etc.

The problem is, doing damage to the root cause of the problem and feeling bad are out of phase, the pain from the root cause is negligible and seemingly manageable, feeling bad is a symptom of the consequence of the root cause and therefore we have already done significant damage before we stop (doing that thing that has been on our mind for some time and we are willing to take a bit of pain to achieve it. From reading the posts I reckon you all know what I mean). You achieved that thing you wanted to do however you are now paying for it and will be for a while.

I have finished the water tank stand, however my arm is more sore than it has been for quite a while and I have made the root cause significantly worse. It would seem that my worst enemy is the enemy within. Regards towelhorse

I would have to agree! I have been feeling well for the past couple of days, so today my hubby and I decide to do some gardening. Nothing too strenuous just planting a few shrubs, pulling out a few weeds etc. Well I have just come inside I have severe pressure in my head pain radiating down from my neck into my shoulders and a sore face...so its 2 panadeine forte for me. I am my own worst enemy at times because I DONT watch TV (believe it or not!). I couldnt sit still long enough. Even when I am in the middle of a flare I will sit and read. I am always thinking of the next thing that needs to be done. I walk around the house doing the odd job when the rest of the family are watching a movie etc. I really dont give myself a fair go to heal. I have always been employed (until recently!) But I have always been the same, I just dont like to sit around doing nothing, it drives me nuts. I cant sleep during the day, I can manage to lie and rest for 20 minutes. I have an active brain (although probably not very bright!!!) that prevents me from sitting and relaxing. It sucks, I really wish I could just sit a while.......ahhhhhh

Ozzy

[QUOTE=towelhorse;150849]THORACIC OUTLET SYNDROME RHYTHMS



The rhythms of TOS appear. Feeling bad ---rest ---feeling better---increased capacity--- either you or the person writing the medical certificates increases the workload---feel worse---do more damage to the root cause of the problem---rest--- increased capacity---feel worse----etc.


I could not agree more with this. I hate the forced inactivity and drives me crazy that I want to do so many things but cannot. I have finally realised limitations but even so I would rather be pre 04 than post 04!!

Best wishes
Hx

I agree - I have repeatedly said that increased activity has a direct impact on my pain levels. I feel crappy, I rest for a day or two, then I spend the next day going overboard (which can be as simple as folding a load of laundry and doind some simple cleaning to baking a batch of squares {I have some of the easiest recipes!}) and then I end up back lying on the couch for a day or two. Of course I would love to be back where I was even 2 or 3 years ago...at work every day, going to the gym, walking with the dog through the park...ha! Despite what every ins. examiner says I am not where I was before my accident.

I have also noticed that as the pain in my shoulder/arm increases my neck gets tighter and I deveop migraines...