Chronic Pain- Ehlers-Danlos Syndrome
Ever since I could remember I have had pain throughout my whole body. I remember being in Kindy and telling my mum that my knees hurt, my back is sore and that my feet felt as though they are going to fall off. I recall being a little kid and hurting so very much after physical activity. The feeling was as though I had been hit by a truck. Not wanting to get out of bed. My whole body would just ache. No one could tell us why.
As I grew older my pain started to get worse. I was around 20 years old when I started to use a plastic chair in the shower as it was so hard to stand without shoes on to shower even just for a few minutes. My feet felt as though they were going to break off.
I actually don't remember a time where my feet, ankles or knee's never had any kind of pain. When I hit high school I use to walk to school with a heavy school bag and remember feeling as though my ankles and knees were jelly wobbling around in my joints. I felt like my joints were going to slide right off their sockets. All my joints felt weird and wobbly. I hated it! I wanted to be this really active young person but felt very imprisoned in my own body. It was and still is very hard as so many people look at you and just assume you are fine and it is all made up in your head.
I have literally spent my entire life looking for answers. Why do I have so much widespread pain? What am I doing so wrong? Why am I not strong even though I work so very hard at becoming stronger? Why do I get injured so easily? Why do all the Dr's and therapist dismiss my pain and tell me that I am ok? "Your blood test and scans are normal", "I don't know why all the treatment/therapy is not working"
People with rare and chronic diseases spend years searching for answers:
“But you look normal”
“You’re too young to have so many problems”
“You can’t have that, it’s too rare”
“No one knows what that is”
"It's all in your head"
"Maybe you need to stress less as you are holding all the stress in your body"
Finally I have found the answer: "You have Ehlers-Danlos syndrome"
What is that?
Ehlers-Danlos syndrome (EDS) is an inherited condition that affects the connective tissues in the body. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs. It's made up of cells, fibrous material, and a protein called collagen. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.
Connective tissue is what the body uses to provide strength and elasticity; normal connective tissue holds strong proteins that allow tissue to be stretched but not beyond its limit, and then safely return that tissue to normal. Connective tissue is found throughout the body, and Ehlers-Danlos syndromes are structural problems. If one builds a house with faulty materials, say half the necessary wood or with soft aluminum nails, it is certain there will be problems. Some problems are more likely to show up than others, but because those materials were used everywhere and are not necessarily visible, one can be surprised by where a problem shows up or how serious it is.
It is much the same thing with an Ehlers-Danlos Syndrome and connective tissue.
The connective tissue a person with EDS is built with is not structured the way it should be. With a badly-constructed or processed connective tissue, some or all of the tissue in the EDS-affected body can be pulled beyond normal limits which causes damage. Connective tissue can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes.
The problems resulting from one’s body being built out of a protein that behaves unreliably can be widespread and in a wide range of severity. It shows up in places that seem unrelated until the underlying connection to an Ehlers-Danlos syndrome is recognised.
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome are identical. We have different symptoms, different types, different experiences
This is what I experience daily:
Numbness and tingling in all my fingers and feet that can last all day
When I lay in bed at night I have pins and needles down both my arms and legs
Sore knees if I sit for longer than 5 minutes
Sore back if I sit for longer than 5 minutes
Shoulder clicking and pain
Hip clicking and pain
The main reason I love Pilates so much and I decided to became an instructor was because Pilates was the only exercise I did in my whole life that didn't make my body feel like it was going to break into a million pieces. I honestly felt if it wasn't for this gentle form of exercise on my joints I could not safely build up my strength to get through simple daily tasks. Even though I experience chronic pain daily I can manage it and still get through my day. When I was in my early 20's my pain was so bad I remember taking time off work as my pain was too much. This is no longer the case.
Even though I feel sore every day I still make a conscious effort to improve my quality of life.
Over the past 10 years I have become extremely health conscious and I do notice that food can make my symptoms a lot better or worse. Even though I never had a diagnosis until recently I have been trying to improve and manage my pain my whole life.
Over the many years I have found that eating unprocessed foods and eating as natural as possible has made a world of difference. You would not believe the difference this makes to my over all pain. Sometimes I have no choice and I have to eat highly inflammatory food as I am out and there is no other options. I will be in extreme pain in all of my joints and muscles for days afterwards.
Here is what I avoid to help reduce my daily pain:
All dairy products (milk, cheese, yoghurt- even hidden dairy in food)
Preservative and additives
I have been taking the following supplements for around 10 years now daily and I honestly feel shocking without them. These have improved my quality of life dramatically
High strength Magnesium powder
Ultra premium High strength Fish Oil
Organic Greens powder
I try to eat food rich in high quality fats. Food that helps me with my pain management
High quality nuts and seeds daily
Olive oil on all my salads
Grass feed/organic meat
Organic food as much as possible
Organic pasture raised eggs
Daily bone broth or vegetable soup with homemade bone broth
Exercise that has helped me build my much needed muscle tone:
Pilates- Mat and Equipment
Training on a vibration platform machine
Stand up paddleboarding
Walking (Very minimal walking as this aggravates pain in my ankles and knees)
Therapy that I have found effective over the years
Acupuncture (still bruise from needles though)
Physio/Osteo (No manipulations or hard massage)
I bruise very easily. I find after some physio treatments and some deep tissue massage I am left bruised and very sore for around a week afterwards due to the pressure placed on my body. So the benefit is taken away from the pain experienced after the treatment.
Don't get me wrong I still have daily pain. However, I am still able to work, be active with my children and do daily tasks. I honestly believe if I didn't do all of this I would be in a wheel chair by now. I also believe if I didn't have this condition I would truly be unstoppable!
I hope that this information will be helpful to anyone else going through the same pain as I have been going through my whole life. This is not a sob story. I want people to know that there are many things people go through daily that is not seen or told to others.
Never stop trying or working hard to improve. Hard work does pay off it just takes time :)