How Ehlers-Danlos Syndrome Affected My Day


“How are you doing?” amongst other questions are very difficult to answer. The usual answer you will get from me is, “I’m OK, thanks.” This doesn’t even come close to how I am but is the quickest and easiest answer I have.

Living with pain and fatigue everyday is so difficult for people to comprehend. I do have some close friends and family that understand, but they will never 100 percent know because they are not me. You are the only person who truly knows how you are feeling.

I will try and describe how I am today.

I woke up quite late (10 a.m.) due to an exceptionally bad night. It was after 3 a.m. before I actually fell asleep. This was because my restless legs syndrome kicked off as I am just about to fall asleep. My legs usually start off by feeling like a dead weight, numb and I feel like I cannot move them. Then the pain I can only describe as prickling needles all over them. This is so frustrating as you cannot just switch off from how they are feeling. I get up, stretch, walk around, get medications and heat packs if needed and try again. Then the cycle will happen again.

My shoulders hurt all the damn time! They are so prone to subluxation. For a healthy person, if this happens, medical attention maybe required to place the joint back in. Due to my Ehlers-Danlos syndrome, this is a daily occurrence and happens all day long. The actual subluxation isn’t always painful as it happens so frequently, but the pain is always there though. For me, the joint will go back in on its own. I have to hold myself in a certain way so my muscles hold the joint in place which is exhausting, as I cannot fully relax, otherwise they will just slip out of joint. This causes micro and macro traumas, and this is why it’s so painful all the time.

Waking up, I spend sometime in bed just working out what hurts and what kind of day today will bring. My main issue is if I haven’t paced well enough or done too much the day before, everything hurts. I have to work out if I need painkillers just to get out of bed and today was one of those days. My most painful points today are knees, hips, back, neck, shoulders and to top it off a headache. You gotta laugh otherwise you will never get out of bed and get on with life. Despite the pain, I look “normal” walking my dog, chatting to people whilst all the time I am in pain.

Because of all the pain and the fact my muscles work extra hard to hold my joints in place, this causes major fatigue. Now unfortunately, this isn’t a case of just feeling “tired” all the time or being “lazy.” For me, my fatigue causes me to feel like I have constant flu symptoms. This can also be anything from aching muscles as well as joints, tightness of the muscles, dizziness, or feeling sick. I also really struggle to remember things and really struggle to concentrate. Heart palpitations are quite common too. I sometimes sound a little slurry or can’t remember a simple word and get frustrated with myself – this is called brain fog.

Today, I am pacing whilst cleaning my home. I have cupboards to organize, which I can do sitting down, so I can take things easy and try not to cause myself anymore harm.

At one point in my life I felt that I couldn’t go out. I was turning into a hermit, not wanting to go out because I would hurt more. I had gotten so anxious of the world around me. I’d cancel so many plans last minute because of my pain and fatigue levels. Since I have done a class with occupational therapist, Jo Southall, this has improved no end. Learning to pace properly and listen to my body better is so important. Getting the correct medication levels for myself too has been extremely useful. Having a plan in place for self-care has helped too.

Follow this journey on Bendy Lady Site.

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