What does EDS pain feel like?

Making the invisible visible

I would like to describe my experience of living with pain to help educate and raise awareness for all living with chronic and acute pain health conditions.  For those reading this that know someone who lives with chronic pain, the best thing you can do is listen to them and validate them. You won’t be able to remove their pain, don’t try to fix them, instead, be there for them through ebb and flow and sit with them in their pain. Yes it’s horrid as they may be as helpless as you feel. Allow them the time and space to talk about their pain, how it feels to them physically, how it makes them feel emotionally and the impact on their life. Hear their voice and listen to their words with empathy, compassion and non judgement. Even if you do not understand what they are going through, listening without judgement, releasing expectation and not acting based on that judgement will allow them to lean into their pain with kindness. Through this, over time comes acceptance, what I call the absence of resistance, which helps lessen the pain experience and the impact pain has on life.

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I'm Nicola, a Tai Chi, Qigong and meditation instructor. It can be difficult to explain to people what I go through on a daily basis, which means many have no idea of the depth and breadth of my health challenges. I live with the genetic defect Ehlers Danlos syndrome, an invisible condition that affects the collagen in the body. I also live with fibromyalgia, chronic fatigue syndrome and persistent pain syndrome. These diagnosis are all umbrella names for groups of symptoms that cannot be explained. No one can see what is happening within my body, I appear as a healthy human being and do not look or act sick. I live with a long list of symptoms and challenges that are grouped under pain, fatigue and dysfunction. This article looks at my muscular skeletal pain and hyper-mobile joints in detail. There are many other symptoms I experience, too many too mention in this single article.

Joint Pain

My joints are hype-mobile, which means they compress and open too far. This causes different types of pain. I live constantly with a pulling and drawing pain in my joints, like they are being slowly pulled out of alignment. If I stay still too long, this starts to increase until it becomes acute pain where I need to move to take the gravity pressure off the joint. My joints also subluxate (partial dislocation), creating acute pain that my body reacts by jumping away from the source of the pain. This happens frequently with the bones in my feet, they simply are not there to stand on without all the little bones flattening out and subluxating. I wear orthotics in my shoes, and can only walk around in bare feet with my toes and feet hooked, although not for long. I also sublux my ankles, elbows, wrists, fingers, neck and knees. Strangely my toes subluxate anytime of the day in and out without pain. I am unable to kneel down without my knee caps popping out.

Dislocations are much more painful, however as I have aged, dislocations are rare as my body is getting much more stiff. Subluxations and dislocations feels like your bones are being pulled apart. It’s a unique type of joint pain. It definitely correlates with how you think it would feel to be pulled apart bone by bone. It’s a deep chronic or acute dragging searing pain that you want to escape from.

With compressing subluxations, this is when I over-close a joint and it starts pulling away from the other side of the compression e.g. elbows, wrists and knees. When I sleep on one side, my shoulder joint over compress into my collar bone. If I step awkwardly then the space in my knee joint seems to disappear and it feels like bone on bone has collided and compressed. My joints can unpredictably subluxate without warning. This can be when I am asleep or when walking or using the joints. One tiny movement in the wrong direction and my ankles will “go over”, or my elbow will go too far.

Muscle Pain

My muscles are chronically over-worked, trying to hold together the joints. They compensate for the loose joints by staying hyper contracted. This causes chronic and acute muscular pain, exaggerated tightness and muscle tension, unpredictable injuries and chronic fatigue. All of my energy is used autonomously by my body to try and stabilise my joints. It never works, the joints never stabilise and the muscles never switch off. This in turn causes a lot of physical tension, pain, headaches and regular migraines. The cold and damp weather makes muscle pain much worse as the muscles naturally tighten up to withdraw from the cold. I dread moving into the colder months of the year. I tend to spiral physically come late autumn. Part of Ehlers Danlos Syndrome means I feel the cold much more than the average person. I am not designed to live in cold England for 8 months of the year. My muscles give out a lot easier than the average person, as they are so tired from all their hard work. I also find it difficult to build and maintain muscle mass, push the muscles too hard and they tear, and DOMs is horrendous pain.

Connective Tissue Pain

The connective tissue; tendons, ligaments and whole body fascia. I feel like I live in a physical straight jacket. Under the skin my body feels like I am covered in cling film that is ever tightening. This makes even the smallest movement painful as the cling film does not want to stretch. This is due to the lack of collagen in the connective tissue which makes it less elastic than the average person. This type of pain is like a lengthening movement pain of something that is too tight. This tightness is always present and without exercise becomes unbearable. No matter what exercise or movement I do for self care in a day, the body resets the next day the same as before and there is no escape.  I feel like my body is pulling me into the foetal position, like an ever tightening grip. This also makes exercise very painful as I am deliberately trying to lengthen my connective tissue, to give me a rest as this kind of tightness is exhausting.

Unpredictable Injuries

One of the most difficult aspects is the unpredictable injuries, from injured muscles, vein tears, soft tissue pulls and strains. A sneeze has previously caused a subluxation of the spine column tearing vertebra discs in the process. It can be anytime and anywhere. I carry splints, supports, physio tape and walking sticks in my car at all times. Generally a joint giving out means a fall, as for me it’s usually legs or feet joints. My body automatically sacrifices the rest of my body for the joint that has collapsed, meaning I fall down. That has before been down a flight of stairs in the middle of the night.

Sleeping funny can also cause a knock on effect of acute and chronic soft and connective tissue pain that takes longer than average to heal. I use bolsters and props in bed so that when I sleep my joints are a bit restricted so they do not subluxate as much as possible. It’s not a fail safe method though and I often wake up with neck subluxations where my head has tipped too far back overnight. I find any injuries around the neck and shoulders often result in migraines.

Any time the body is injured this reduces the ability to exercise and maintaining my self care management programme, which has a massive impact on my current baseline. This also adds to chronic fatigue and the body working over time to heal. Targeted exercise is critical, yet with chronic fatigue the battle to exercise when tired is challenging.

Scar Tissue

Scar tissue does not behave the same way with EDS. Healing is poor, I take a long time to heal and I feel I am constantly battling to stretch out and lengthen old scar tissue. The more scar tissue I carry as I age, the worse this side becomes. I experience frequent soft tissue injuries, more than the average person due to weakness in the soft tissue. The more injuries I get the more scar tissue I develop. I have a serious hamstring injury from my 30’s, of which the scar tissue still haunts every movement I make today.