One of the most challenging things about having chronic pain is attempting to articulate exactly what hurts and what type of pain it is as there’s so much often at the same time. As I struggle to properly explain this out loud, I thought I would have a go at putting it all down in writing.
First up on the pain train is the types of muscular pain I experience on a frequent basis…
Pain from an activity:
This is the most obvious type of pain that the majority of people with EDS suffer from but what often surprises people is the type of activity that causes the pain. For “normal” people, this type of pain would occur after a tough gym session or running a marathon etc. but for those of us with EDS simple tasks such as carrying a bag full of shopping can cause us the same level of pain. I personally experience this type of pain just from raising my arm, standing up, carrying a bag, writing etc. Whilst this pain is extremely sore, it is not debilitating and goes away a while after stopping whichever activity caused it.
For me, this is definitely one of the worst types of pain caused by EDS. When I say constant, I literally mean 24 hours, 7 days a week – there is zero let up. A good day for me is when the pain that consumes my body is dull enough to let me get on with everyday life with minimal relief needed. Personally, this type of pain occurs daily in my back, neck, shoulders, heels, hips and knees. The actual pain is hard to describe but the best description I have heard is to think of the worst pulsing headache you’ve experienced and then imagine that same pain without the pulsing, all over your body. This type of pain has no treatment, however certain things can provide a small amount of relief such as; heat pads, pain killers, tens machine and gels like deep heat and bio freeze.
Whilst the constant pain can be debilitating, I actually find the sedentary pain that EDS causes by far the worst. By sedentary I mean that this particular type of pain is caused by quite literally sitting or lying down. Growing up I thought it was normal for my body to hurt when sitting down and to have to constantly change positions but it turns out it’s not…
So those are the main 3 types of muscular pain that I frequently experience but unfortunately, EDS causes joint pain as well and this can be split into; injuries, sudden & sharp pain, idiopathic pain and general aching.
The most common joint pain I experience is from subluxations and dislocations, mostly of the knee but occasionally my ankles and shoulders too. With subluxations the pain usually goes away relatively quickly with the help of ice and bracing. The pain from dislocations takes a lot longer but it does depend on how severe the dislocation was. My most recent one was in November and it still hurts almost 3 months on, whereas when I dislocated it back in July it hurt for a couple of days and then I was just left with the instability.
Sudden, sharp pain:
This pain is one of the strangest that I experience and I am still not sure what actually causes it. It quite literally comes out of nowhere; I could be walking around on a relatively low pain day and all of a sudden, I will get sharp pain through one of my joints that occurs whenever that joint is moved. This is normally in my feet, hips, elbow, fingers etc. Unlike the pain caused by injury, it doesn’t last a long time (usually between a few minutes to a few hours).
It’s possible that the pain is caused by something slipping out of place but I could of course be completely wrong.
Sometimes with EDS, our joints just hurt… no injury or activity needs to have taken place. I can literally just wake up and one or more of my joints will be hurting for absolutely no reason. The pain is very similar to the constant pain I mentioned above but localised to the joint rather than muscular. This type of pain cannot be relieved through rest, painkillers etc and it hurts no matter what I do; whether I’m lying in bed, sitting on the sofa, walking or carrying something.
A lot of the time, on top of the muscular and joint pain my body just feels achy. The only way I can describe it is like the aching you get when you are coming down with flu, it makes me aware of each joint with every movement I make. It’s an irritating type of pain but it isn’t unbearable and I can push through it if needs be, it just makes me feel lethargic and not particularly want to do anything.
Hopefully this post helps to explain a little of what it feels like to have EDS, however pain is not a one size fits all and whilst I experience all of the above, another person with EDS may experience completely different types of pain.