Monday, 25 May 2015

Everything Else: It's not only Ehlers-Danlos Syndrome



Us lucky lot with a chronic condition usually deal with an array of comorbidities - meaning that additional illnesses co-occur with the primary condition. I was diagnosed with Ehlers-Danlos Syndrome first and then various other disorders as time went on; some of them are heavily linked with EDS and others are completely stand-alone. As some of the symptoms overlap it is increasingly difficult to decipher which condition is causing a particular symptom.
However, below is a few other conditions that I have to deal with (yay me):

  • Dysautonomia - Many patients with EDS, especially hypermobility type (H-EDS) suffer from a dysfunction of the autonomic nervous system. This includes heart rate, body temperature, digestion and blood pressure. I find it difficult regulating my temperature, I can be shivering cold, covered from head to toe in dressing gowns, duvets etc and not able to get warm, or sweating in the middle of winter. I also sometimes have difficulty swallowing and my blood pressure fluctuates.
  • Postural Orthostatic Tachycardia Syndrome (PoTS) - When changing position there is an increased heart rate; this causes dizziness, light-headedness, palpitations, blackouts, headaches, poor concentration, chest pain, and shakiness, amongst other things. I have been suffering quite badly with PoTS lately, I am extremely wobbly, seem to be constantly shaking and have horrible 'shaky' attacks were I feel disconnected from my body, it's very strange and extremely uncomfortable.
  • Fibromyalgia - Fibro is widespread chronic pain and fatigue. It is typically diagnosed by pressing on specific tender spots. I remember almost punching my GP when she was examining me, it was absolutely excruciating, she wasn't applying that much pressure but it was so painful. Even if I rub my shoulder and accidentally hit one of the tender spots, I feel like I'm going to be sick. I hate it, I don't want it.
  • Irritable Bowel Syndrome - Most people with EDS suffer with gastrointestinal problems due to the stretchy tissues. I'm very sensitive to certain foods and have to keep a 'food diary', I suffer with nausea, agonising abdominal pain, reflux (I even choke in my sleep, which is a barrel of laughs), and then all the other lovely things related to IBS.
  • Depression and Anxiety - Due to all the pain, lack of sleep, lack of social life, I obviously get depressed. I become very low, quiet, I shut myself off from the world, I cry a lot and there's not much that interests me when I'm feeling like this. I also suffer with panic attacks, I'm weary of new things, I don't like being on my own, I just feel on edge most of the time and it sucks. This obviously affects my (lack of) sleep.
  • Plantar Fasciitis - Who wouldn't want that fancy-named condition? It's basically a jazzy way of saying 'inflammation of the heel'. It's so painful when it's acting up - each step is a nightmare. I wear shock absorbers in my shoes to help but it can be torturous.
  • Flat feet - Yes, ladies and gentlemen, how sexy? Heavily linked to H-EDS, flat feet is common as the ligaments stretch (because we're bendy) and the arches collapse. A podiatrist once told me that I had feet like 'wiggly worms' as when I was observed walking my feet went all over the place, some people walk on the inside/outside of their feet, mine do as they please and each step is a gamble. I have custom-made insoles for my shoes.
  • Temporomandibula Joint (TMJ) - My jaw dislocates, is painful, the dentist dislikes me, eating hurts, it clicks all the time, I get ear and face ache. This is connected to H-EDS too.
  • Costochrondritis - Ever felt like you have a pile of bricks on your chest? Costochondritis is an inflammation of the joints between the cartilages that join the ribs to the sternum. Breathing is brutal when this is kicking off, I try to hold my breath so I don't have to keep enduring the pain
  • Kyphosis - This is a curvature of the spine, the vertebrae in my spine did not develop properly. I've had this since I was a teenager and my back is always sore, every day. I've recently had an MRI to see what else is going on.
  • Sciatica - I had an MRI because I keep getting sciatica, at least once a month and it lasts for a week. I can't lift my leg an inch off the floor when it's bad. It's a nerve pain that starts in my lower back and radiates down to my bum and thigh. It causes numbness, weakness and extreme pain - I scream with the pain. I hate it.
  • Insomnia - A lot of patients with H-EDS have insomnia; sleep disturbance due to pain is common as is actually getting to sleep and maintaining it. There's nothing worse than being absolutely exhausted and craving your bed but lying awake staring at the ceiling because your *insert painful bit here* is killing. I go through phases of sleeping okay for a week and then awake at all hours and sleeping a couple of hours for three weeks. It's a horrible cycle.
  • Chronic Fatigue Syndrome - But I'm knackered all the time. CFS goes hand in hand with H-EDS and Fibromyalgia, it's not like the 'tired after work' feeling, it's absolute exhaustion after you've just woken up. It's not aided by resting, it's feeling like you could drop after brushing your teeth, the easiest task is draining...and then I can't sleep because of the insomnia. I spend a lot of time in bed, I take naps. I'm shattered.
  • Raynaud's Syndrome - The blood supply to my fingers and toes is affected, they lose colour and become painful. I should probably wear gloves more often.
  • Neuropathy - Neuropathic pain is that burning, shooting nerve pain that can occur when a nerve is pinched or compressed. This happens on a daily basis, I am always twitching, having muscle spasms or numbness in various areas, it isn't pleasant and the spasms make me very self-conscious.
  • Migraines - Of course, I get debilitating migraines too. I can barely open my eyes, they make me nauseous, sensitive to light and noise, dizzy and irritable. I try to go straight to bed when I feel a migraine coming on as I can't function at all and shutting my eyes is the only solution. Along with meds, a lot of meds.
I know for a fact that I will have forgotten something but only time will tell. If you'd like to know coping mechanisms or a more in-depth post about a particular condition, do let me know.

Please take a look at my post dedicated to EDS to find out more about the condition.

Sarah x

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