Sleep, fatigue, hypermobile Ehlers-Danlos Syndrome and TOS.

Getting sleep can be a challenge with TOS - that is partly because if you end up lying on the side(s) that are affected you can wake up to a numb arm, a cold arm, or perfuse pins and needles or a combination of all three. I should imagine this is far worse and more or a concern in those with Venous TOS or VTOS or Arterial TOS or ATOS. I do have aspects of ATOS, and so my arteries are responding to the nerves that contract the subclavian artery. I am fortunate in that  I do not or have not had blood clots which can be very worrying. Fortunately this only happens in about 1 or 2% of the overall patient cohort.

I usually sleep on my back most of the night, but if I end up on my side a dead arm eventually wakes me enough to move or turn over. I confess to sleeping with a heat pad for my back - even in summer. This is for pain management. As I am often cold even still having double duvets in May you can tell how bad my circulation is, - that is partly due to having Postural Orthostatic Tachycardia Syndrome PoTS and Ehlers-Danlos Syndrome (EDS). I am also hypermobile - having more flexibility in my joints than those with 'normal' joints. My hypermobile EDS hEDS causes pain as well - and in fact 50% of the patients  Rob Patterson, physiotherapist and Orthopaedic Consultant in Bristol sees have hEDS and TOS together [as comorbid conditions]. All these conditions including PoTS seem to have overlap symptoms.

Fatigue is another symptom that overlaps with hEDS, NTOS and PoTS. I have tried to explain fatigue a number of times in the books and papers that I have written about hypermobility and EDS in the past. It is not just being tired. It is a feeling of being completely wiped out, like all the battery you have has gone flat. Sometimes it also affects my cognitive function and I can't spell words, or even speak sensible sentences. Fatigue can sometimes be so overwhelming that you are too tired to sleep. It can last for hours or even days. I have Fibromyalgia as well [just for good measure] and that is another condition where fatigue is a problem. There is a term 'Fibrofog' which explains the cognitive dysfunction that accompanies fatigue. I often need 8-12 hours sleep, although I never ever sleep through the night.

Autonomic dysfunction is a large part of hEDS, PoTS and Fibromyalgia  - and to an extent it must be the case with TOS as well because of the temperature changes that patients seem to experience. My hands are always like blocks of ice. The Autonomic Nervous System or ANS is responsible for controlling things like heart rate, blood pressure and temperature. In patients with these conditions it is very out of balance which results in feeling like you have flu and this fatigue I was talking about.

Pacing of activities can help to manage fatigue - but there is no guarantee that you might be caught off-guard with a fatigue attack even if you've had a quiet day - sometimes it was to do with sometime you did days before. If I have a very busy day  - going out all day or seeing friends, I usually need a quiet day the next day. Two busy days in a row usually result in at least two more where I need my bed.

Clumsiness or dyspraxia, now known as Developmental Coordination Disorder - DCD (another acronym) - seems to show itself in later stages of TOS - at least being clumsy does. I have lost my fine motor control for things like 'eating peas' - I need a spoon now. I can't open medicine bottles or bleach cleaning products. There is no way I could manage to sew anything. As I have mentioned in earlier blog entries I have stopped being able to play my recorder. Even typing is becoming harder.

Maybe one day I will write a longer article about TOS - in the meantime here are some pictures of hypermobile joints that may affect TOS patients, and below a link to my books.

https://www.bowenworks.org/books-research.phphttps://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31428