I had a bad day :(

Hi Guys,

IN ADVANCE: THIS MAY BE A DEPRESSING POST

Today I went to my physio who I will call P for the sake of this post. She said that my muscles are just wasting away so I may have a muscle wasting disorder. And I need to get testing to see what is going on. P is very worried about me and says I am too frail and if they don't figure out what is wrong I will continue to get worse and worse.
Then I went to my Bowen Therapist I will call her B. B said that my scoliosis has got to the point that I need surgery before it gets much worse. I am scared and worried. I know that I need the surgery but I am scared of something wrong happening because no surgery is simple with EDS and this is a BIG surgery.
Oh well I will have to wait and see and talk to some doctors.
If any of you have had this surgery please comment about your experience.

Thanks
EDSgirl

So am I to add Addisons Disease to my list?

Hello,

I am AMAZED!! Yesterday I went to get a molescan and I was telling the doctor (who I have never met) that I have Ehlers Danlos and he said "oh yes I know what that is, I just skimmed over it in med school" then he proceeded to tell me a lot about it, why, what it affects. He told me more than my doctor has told me in 6 years in under half an hour. Then when he got to my back and saw my scars that my doctor said were caused by growing. HAHA.
He asked me if I had ever been tested for Addisons disease. No I haven't. He said that I have the signs of it then he touched my bones which made me whimper in bone and said that more than likely the Addison's is eating the bone (in a round about way) So maybe I don't have Chiari YAY! I looked Addisons up and I do have the signs. Hopefully I will find out within the next couple of weeks.
I am feeling mixed emotions about this, but at least it is a step in the right direction. I am thankful to that doctor.
I am having a bad day today in a lot of pain and tired (didn't sleep well last night) and feel as though I am coming down with the flu.

Have a goodnight
EDSgirl

Laughing it off

Hi,

One thing that I have learnt threw my EDS journey is that I need to laugh at things. I think this really helps me to get through. If I cried every time something went wrong so now I laugh and make a joke when something happens. This is one of the best lessons I have learnt

EDSgirl

Overdoing it and Adjusting

Hi,

I have found that because I am sick most of the time when I do have a good day I tend to over do it and then I have a string of bad days after that. Yesterday I was feeling heaps better than I have been lately so I did a lot of errands that I wanted to do yesterday morning, then I had a doctors appointment in the afternoon and then I went out with some friends last night. Today I am utterly exhausted and am laying in bed resting up and taking a lot of pain killers. I am glad that I went out yesterday as I had a really good day and had some sense of normality which I am losing lately but I am paying for it today. I have found that I have to way up the odds and prioritize do what is absolutely necessary before doing the things that I have to do. I suppose I need to learn to know my limits so that I do not suffer the next day- but is the price to pay for that giving up a normal life? I don't want to do that but I have to keep my body as strong as possible so I can do what I have to do. I am learning to adjust and mourning for the old me- the life I have lost. I may put up a brave front but I do miss the person I once was even though I was never 'normal'. Last week the doctor told me basically that this is it and I will continue to deteriorate and I need to enjoy my life while I am still well enough to live it to some degree. I am still in shock even though I knew it was coming. So at the moment I am adjusting and getting used to the way that I now have to live my life.
Sorry if this post is a bit depressing
EDSgirl

Thankfulness

I wanted to write a list of things I am thankful for some have come to me after I was diagnosed with Ehlers Danlos:

1. Waking up in the morning- I now appreciate waking up in the morning because it is now uncertain as to how long I will be here for.
2. God- My faith in God gets me through everything and I couldn't live without it.
3. My Family- The support my family has given me is amazing and I couldn't do it without them
4. My Friends- I am blessed to have some wonderful friends who help me all the time and cheer me up when I get a bit down.
5. The Ehlers Danlos Community-The friends I have made in the Ehlers Danlos Community are amazing and offer support for me
6. Scrapbooking- Scrapbooking is a hobby of mine and it keeps me sane! I love it
7. The Wonderful Doctors- I have some amazing doctors who work on me and help me whenever I get sick (fairly often) and I am grateful for them

That is my list of thankfulness for the moment I may add to it from time to time in other posts as I remember things.

EDSgirl

Leg is out of the immobolizer

Hi,

My leg is finally out of the immobilizer and I am able to bend it. When I go out I am still using when I go out to give it extra support and keep it safe but it is feeling much much better!!

EDSgirl

More Detailed Look into what Ehlers Danlos is

Hi,

I know that my description of Ehlers Danlos wasn't very in depth so I thought that I should write a more detailed post about it. If any of you think I have missed something out please tell me and I will add it in :)

Ehlers Danlos Syndrome is a connective tissue disorder which is caused by a lack of collagen. Collagen is found in 90% of the body and is basically the glue that holds the body together... without it you fall apart. Ehlers Danlos Syndrome is a chronic condition that until such time as a cure is found it isn't going to get better... or as I had doctors tell me when I was younger 'grow out of it. Doctors often think that Ehlers Danlos Syndrome is growing pains or the person who has all the medical problems is a hypochondriac or is just seeking for drugs. Until someone diagnoses the person and then all the pieces of the puzzle fall into place.
There are several different types of Ehlers Danlos Syndrome:

• Classical- This type causes- joint hyper mobility, smooth, stretchy velvety skin that bruises easily, dislocations and sublaxtions of the joints and scoliosis
• Hyper-mobility- hyper-mobility and dislocations/sublaxtions of the joints
• Vascular- increased risk of rupturing, visible veins through the skin and dislocations/sublaxtions. Vascular Ehlers Danlos Syndrome is the most life threatening type of Ehlers Danlos.
• Kyphoscoliosis- fragile globe of the eye, joint hyper-mobility, scoliosis and dislocations.
• Arthochalisia (this is the type that I have)- joint hyper-mobility, skin issues, dislocations/sublaxtions particularly of the hips.
• Tenasin-X- This is a new type that they are doing research into at the moment- joint hyper-mobility, hyper-elastic skin and dislocations.

The different types of Ehlers Danlos are each classified according to the differing symptoms. These are in no way the only symptoms that each type has but just a general idea of what the doctors look for when diagnosing the specific types. Even people with the same type can have differing symptoms and levels of severity. In every type of Ehlers Danlos there are certain symptoms such as fragile skin and loose joints which each type has. Every type of Ehlers Danlos can have life threatening complications not just vascular even though there is more of a risk with vascular. Ehlers Danlos Syndrome is an inherited disorder.

Hopefully this was a bit more in depth and helpful.

Love,

EDSgirl

Bedding Specialists, Occupational Therapists and Physios

Hi,

Today some bedding specialists, occupational therapists and physios came out. I really liked the bedding specialists they were really nice and had some great ideas so that I can get a better night sleep. My Occupational Therapist had just got married so I had a look at her wedding photos. My physio is going to send me out some exercises to get my knee active again. The bedding specialists think that I may have Periodic Limb Movement Disorder- I have read through the symptoms and it does sound like what I do at night!! I am rather sore today and very tired as I had a bad night sleep. Hopefully this will help and give me a chance to get a proper nights sleep. The bedding specialists have some ideas to help my thyroid problems all these things are good so I am heading in the right direction.

Thanks,

EDSgirl

Capsule in Knee

Hi,

Just wanting to put a note here for my own benefit. Last Saturday 9/6 I had a fall and tore the capsule in my knee. It has been quite painful and has been in an immobilizer ever since. Tommorow I will see my physio and she will give me some exercises to do to help get it mobile again. It will be good and I will be up and about again before I know it.

EDSgirl

Symptom List

Today I am going to do a list of my symptoms- there is a lot: I want to make it clear that not every person has the same symptoms. As well as Ehlers Danlos Syndrome I have Postural Orthostatic Tachycardia and Hypothyroid
These are my symptoms:

• Dislocations (of every joint in the body)
• Subluxtions (of every joint of the body)
• Pain
• IBS
• Chronic Fatigue
• Dental and gum problems
• Painful skin
• Stretchy Skin
• Velvety soft skin
• Flat feet
• Hyper mobility
• Muscle weakness
• Clumsiness
• Poor wound healing
• Abnormal Scarring
• Nearsightedness
• Curvature of the Spine
• Weak Blood Vessels
• Leaking Valve in heart
• Easy Bruising
• Blue Sclera
• Low Muscle Tone
• Fainting and Near Fainting
• Palpitations
• Shortness of Breath
• Chest discomfort
• Loss of Sweating
• Nausea
• Abdominal Pain
• Migraines and Headaches
• Tachycardia
• Intolerance to Heat
• Light and Noise Sensitivity
• Arrhythmia's
• Small Appetite
• Dry Coarse Hair
• Dry Skin
• Decreased Concentration
• Blood Clotting Problems
• Brain Fog
• Ringing in the Ears
• Poor Blood Circulation
• Loss of Smell
• Blood Clotting Problems

So they are my symptoms

Thanks EDSgirl

Ehlers Danlos Syndrome

Hi,

I am writing a blog to raise awareness of Ehlers Danlos Syndrome and to record the daily happenings of my life that include Ehlers Danlos Syndrome. I will most likely refer to Ehlers Danlos Syndrome as EDS.
What is Ehlers Danlos?
Ehlers Danlos is a connective tissue disorder caused by a depletion of collagen which makes up 90% of the body. Ehlers Danlos affects every part of the body.
I want to help people to understand Ehlers Danlos Syndrome and I think that this may be a way to do it.

Thanks,
edsgirl