Here I will describe in more detail about my main conditions:

I have Ehlers Danlos Syndrome type three.

(Which is also known as Hypermobility Syndrome (HS), personally I do not like that title as people tend to think I am just flexible, and not understand all the other symptoms that go along with it)

 

EDS is a connective tissue disorder, it is caused by a defect in a protein called collagen. There are over 30 types of collagen in the human body, so you might realize that it effects a lot of my body!

 

The current medical opinions is that my Ehlers Danlos has caused my other related conditions.

 

There are common characteristics of EDS 3, but as with all chronic illnesses the symptoms, and severity, vary with each suffer.

My body is impersonating a marionette, it has to work very hard to hold itself up.

 

My large muscles are constantly tense as my little muscles that should automaticaly hold me up, don't. Incorrect physio for years has made the situation worse. This causes a lot of pain and stiffness particuarly in my back & neck. It also worsens my fatigue.

 

 

(Picture courtesy of trishamcnally.com)

My main symptoms are: joint, tendon and muscle pain, (my tendons & muscles move about and often get stuck in the wrong position,) my joints sublux (half dislocate), to different degrees, and my right hip, left shoulder, toes, finger & wrists dislocate (fully pops out of its socket).

 

I have extreme weakness (it takes a lot of effort for me to do anything but lie down- even to just sit up) and sore muscles after I exert a lot of effort (i.e. back muscles cramping and hurting after having my arms in front of me to wash, or when sitting up straight) I have a tonne of symptoms that I have got used to experiencing, including :Migraines, headaches, feeling sick, constipation, very slow transit time, gastroparesis, tummy pains, acid reflux, weak teeth (I have lot of fillings even though I have good dental hygiene), weak skin (I have many stretch marks) and sound and light sensitivity. Also I am greatly affected by a general "malaise" and having low energy levels.

 

Isabelle "Izzy" Armstrong on Coronation Street is played by Cherylee Huston, has Ehlers Danlos Syndrome type three, like myself.

 

 For more information visit: http://www.ehlers-danlos.org/

 

The Zebra has become the visual link to EDS. The common saying, often used in the medical field, is "If you hear hooves think horses, not zebras" meaning that often the most common cause/condition if the most likely. However this does not apply to rare conditions such as Ehlers Danlos. 

A lot of doctors seem to forget that although more rare conditions are unlikely, they are not impossible. (It is percentages, even if only 1% of a million people have it, then actually 10,000 people would have it!)

Also zebras have unique markings, and everyone with EDS are effected slightly differently and to varying severity.

 

I have Autonomic Dysfunction including POTS (Postural Orthostatic Tachycardia Syndrome.) Again this varies greatly in severity, and some people can live with it hardly effecting their life, however at the moment it is ruining mine.

 

It is an autonomic problem, so all involuntary or unconscious thing my body is supposed to regulate, it doesn't.

 

This includes my heart beat, blood pressure, circulation, sweating, breathing, digestive tract, my urological tract, body temperature, brain function etc.

 

Conservative treatment (such as drinking a lot, exercise & salt) does not help me, only medication has enabled me to do more than staying horizontal.

 

I also faint a lot, when I am sitting and standing, although it comes on faster and is worse when standing.  I usually try and lie down as quickly as I can, and I can often fight the fainting off but sometimes that means  have to remain lying down for hours or days at a time. 

 

POTS can also cause headaches and migraines, and makes me feel very ill, like I have the flu which includes weakness fatigue and the inability to remain upright without passing out.

 

I watch A LOT of television, my Netflix account probably gets the highest usage rate of anybody!

 

For more information visit: http://www.potsuk.org/

 

I have been diagnosed with kidney stones and a chronic kidney infection.

 

As the nice little old ladies I chatted to during my recent stay in hospital pointed out, it is surprising for me to have kidney stones as I am neither old, not male, and have no family history of kidney problems.

 

My right kidney is the problematic one, it needs to observe the left one and behave its self!

 

I have had an IVP which showed that my right kidney drains significantly more slowly than my left. As my current urologist doesn't know what is causing the infection or stones, he doesn't know how to treat me.(And is not asking anyone else for their opinion, or actively doing anything to help me.)

 

Anyone who has had a kidney infection will know how horrible it is, imagine feeling like that 90% of the time & that is how I feel.

 

I am on long term antibiotics (I try another one when my symptoms worsen), which prevent the infection from going full blown, but it is a chronic low grade infection that occasionally gets worse and I have to switch antibiotics again.

 

In 2014 I was diagnosed with dermatographic urticaria, summed up my skin was angry & I was intensely itchy! I have since been on a lot of antihistamines which thankfully have greatly reduced my itching.

Several doctors have suggested I might have Mast Cell problems (which dermographism is one of the symptoms of) but the immunologist on the NHS refused to see me! Apparently just by having a quick chat with my GP they could tell they 'couldn't help'... This is just one of the medical concerns that have not been fully explored & I want to address once I am able to.