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My EDS and CMT Symptoms

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Along with my zebra stripes here is a list of the other lovely symptoms that I have collected…  There is a lot going on here, I have probably missed something off! Some symptoms are related to my Charcot Marie Tooth diagnosis, some to Ehlers-Danlos Syndrome and lots to dysautonomia.  Not all of my symptoms hit me at the same time – thankfully!  Some are permanent others are managed but can flare up. There is quite probably an overlap in some areas like pain and fatigue.  This is not a ‘poor me’ post, I didn’t actually realise everything that is going on until I wrote it down because I just get on with it.  On days when I’m feeling a little bit hopeless I’m going to read this list so I realise how well I’m doing!!!

  • Reactive hyperglycaemia
  • Low blood pressure
  • Orthostatic hypotension
  • PoTS mostly this is mild and affects me most when in a flare
  • Palpitations
  • Adrenaline issues
  • Bowel dismotility
  • Fatigue
  • Tiredness
  • Cold hands and feet
  • Inability to regulate body temperature
  • Night sweats
  • Poor sleep, due to adrenaline issues or pain
  • Restless legs
  • Cramp, particularly at night
  • Irregular heart beat
  • Autonomic neuropathy
  • Dizziness
  • Fainting (occasionally) but pre syncope more often
  • Hole in the heart
  • Shortness of breath
  • Chest pain
  • Blurred vision
  • Migraine with aura
  • Tingling fingers
  • Slight tremor
  • Brain fog
  • Bloating
  • Wheat intolerance
  • Chronic constipation
  • Resistance to anaesthetics
  • Subluxations happen daily (8 toes are permanently out!) but mainly my ankles, feet, toes, knees, hips, wrists, small bones in my hands, thumbs, shoulder blades, ribs and jaw
  • Dislocations, thankfully not as often as in my 20’s where I dislocated my knees 100+ times but my big toe joint dislocates often as I walk, hips, knee and feet most recently, other joints occasionally I can wake up with dislocated/ subluxated joints
  • My jaw (TMJ) pops out when I yawn and sometimes get stuck, some morning I wake up with my jaw out and have to manipulate it back into place
  • Pain (neuropathic, muscular, inflammatory and after an injury)
  • Chronic pain
  • Tender trigger points
  • Arthritis, particularly in my knees, hip, feet and hands
  • Patella femoral syndrome
  • Bi-partied patella, I was born with this its your knee cap not forming correctly, it looks like a healed break on an X-ray
  • Poor patella tracking, my kneecaps are small and ride high
  • Joints move beyond normal range 8/9 Brighton scale, (the contractures caused by CMT stop me putting my hands flat to the floor) 9/9 historically
  • Poor propreoception, an awareness of where my body is in space
  • Abnormal scarring which is stretched and thin
  • Translucent skin
  • Easy bruising
  • Loss of feeling in hands and feet
  • Muscle wastage particularly in the glove and sock region
  • Hammer toes
  • Pes cavus (high arch) feet

Prognosis, who knows? CMT is slowly progressive, I will get weaker no matter how hard I try and I will loose more feeling in my hands and feet.  EDS is a whole different ball game, my joints are more unstable than ever before my pain is always there.  But with careful management, good sleep hygiene, pacing, good diet, exercise, viewing medication as a form of control rather than giving in and most importantly a positive approach, then I have to believe that I can do this.


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