Tuesday, 5 May 2015

Day 2 - Symptoms

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Day 2 - Symptoms

I'm trying to work out where to start with this one, there is so much to cover. So, I've decided I'd make a list of symptoms I suffer with due to my ME or illnesses relating to my ME.

Just to reiterate, these are the symptoms I suffer from on a daily basis. Everyone is different and will have more/less than I do. So this is just an insight.

Neurological symptoms:

* Temperature dysregulation and poor tolerance for hot or cold environments. I'm always cold. And occasionally stupidly hot. No middle man!
* Hyperacusis (sensitivity to noise) and photophobia (pain/relapse on exposure to light). I'm sensitive to noise generally, so struggle at loud environments like restaurants. On my bad days, I have my earplugs in all the time as even talking downstairs makes my ME worse. I'm also extremely sensitive to light. You'll see me modelling my sunglasses both indoors and outdoors. On a bad day, I'l be in total darkness and even a dim red light (I have special lights for my sensitivities) will hurt my eyes.
* Pain and pressure behind the eyes
Blurred vision, blacked-out vision, yellow patches and other visual disturbances. This seems to be linked to my migraines, but I've lost all my sight on numerous occasions. Nowadays, I tend to just get blurred vision and yellow lines going through my vision, unless I'm really poorly.
* Difficulty initiating sleep

Plus many others (which I've probably forgotten about)

Vascular and cardiovascular signs and symptoms:

* Heart pain, tachycardia, bradycardia and a fluttering/straining heart. Regularly think I'm dying/having a heart attack. I do have a heart condition though, linked to my EDS, which can exasperate symptoms.
* Very low blood pressure particularly when upright (e.g. 84/48 or less in an adult at rest). I have Vasovagal Syncope, linked to my ME, which means my blood pressure dips dramatically without warning. This causes dizziness, heart fluctuations & black-outs 
* Feet burning painfully and turning blue/purple on standing (Reynaud's phenomenon). I always have purple feet. It isn't attractive. My legs do this also...
* Pain/discomfort/poor digestion following meals. This barely describes it. I've had internal bleeding and have a variety of problems linked to my digestion. Because of this I've got to be very careful what I eat or else my symptoms will flare up dramatically.


Muscular signs and symptoms:

Muscle weakness, numbeness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.)I've had paralysis in both arms and part of my leg before but thankfully I don't experience this on a daily basis anymore. Weakness wise, I'm very weak in most of my muscles, which makes day to day things much harder, and, means I have to work very hard with physio to avoid further deterioration.
* Muscle pain, twitching and uncontrollable spasms. Can't even describe the pain, it makes you feel sick. Thank god for good painkillers. I'm often in a&e with uncontrollable pain. Muscle spasm wise, I 'jolt' when I'm very poorly, but generally usually just get smaller twitches.
* Difficulty breathing and air-hunger, difficulty swallowing/chewing. I feel like I can't get enough oxygen sometimes and ofter struggle chewing and swallowing due to my throat symptoms.
* Daily disclocations/sublaxes. This is mainly due to my EDS but also becuase of my muscle wastage due to ME. I'll have around 3 dislocations on a normal day, which can triple easily on a worser day. My shoulder is the worst. 

Cognitive signs and symptoms:

Word-finding difficulty, difficulty or an inability to speak. I suffer with severe 'brainfog' and when I'm poorly it's very hard for me to hold a conversation or make any decisions. When I'm really bad I struggle to talk too.
Difficulty comprehending speech
Difficulty writing or comprehending text
* Difficulty with concentration
Difficulty with memory

Other signs and symptoms:

* Anxiety and depression. This is one of my worst symptoms to cope with.
Nausea and vomiting. Nausea can be a major issue for me, and when I get very stressed or anxious I struggle with sickness
* Throat and gland pain/tenderness
Food intolerance and sensitivity to common drugs/chemicals. Goodbye Herbal Essences Shampoo.
* Recurrent infections


All these symptoms I have fluctuate on a daily basis, but are always present. This is just a snapshot of symptoms that people with ME may suffer with. The severest cases have daily seizures, organ failure and some have died with the cause being ME. So it can get very serious, but thankfully I've never been at that level. I'm sure there's plenty of symptoms I've forgotten too, but I'm hoping this helps!

Kate x

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