Hypermobility

Today I had my second appointment/assessment at the Austin CFS Clinic. I walked in with Chronic Fatigue Syndrome and walked out with possibly actually having a hypermobility syndrome.

The Dr I saw today asked me to bend and stretch various body parts and based on that assessment I'm considered to have hypermobility.

Being a dancer since I was 5, it never occurred to me that my flexibility was anything other than years of training. Although now that I think about it, even with large breaks in my dancing, I've never really lost my flexibility.

So now I'm starting a new round of research into various hypermobility syndromes like Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.

According to hypermobility.org, "severe fatigue can also become an issue, and is often driven by the chronic pain and poor sleep patterns. This may be confused with the condition Chronic Fatigue Syndrome."

So there you have it. My 'natural' flexibility, childhood scoliosis and chronic fatigue might all be due to a hypermobility syndrome.

Road to recovery

Not to get too ahead of myself, but in the past few weeks I've noticed a slight change in my health. The main change is the lessened crash after lunch. Don't get me wrong, I'm still tired, but lately it's been just that - tired - and not the painful tired I've been experiencing the past 5 or so months. I've even been able to stay up past 9pm without going into a panic and wanting to cry.

My energy levels still aren't high (so no marathons for me just yet), but at least the pain has eased. I've even managed to get through the weekend (just) without having naps. Usually I'd get to about 2pm on the weekends and need to go lie down. But, in the past weekend, I managed to get through without. I struggled from about 5pm onwards, but even then I was still able to function. 

I think it just goes to show that perseverance pays off. Whilst the advice from some was to simply slow down and listen to my body, I kept on fighting. Mostly out of fear of not being able to get up out of bed again, but I fought none-the-less. 

I'm not saying I'm cured, but even feeling this little bit better is a massive milestone. I'm still going to keep up my treatments and sourcing more information and options, but for now I think I've found something that works for me.

For now, I say a big thank-you to those who've helped me through the past few months whilst I've been at my worst. Especially my family, boyfriend and closest friends. Too often I read posts from fellow CFS sufferers who've lost the support of loved ones. I've been lucky in being surrounded by love, support and desire to understand me. So thank-you.

My meaning of tired

I've been struggling a little bit lately with a feeling that people don't understand what I mean when I say "I'm tired". So I'm going to attempt to explain what it is I feel.

My "awake" time
You know that feeling when you can barely keep your eyes open because you're so tired? Or when you've had a few late nights and get to Sunday afternoon and just have to have that nap?
That's me when I'm "awake". It's not always quite this bad, but at least half of my day is with that feeling.

So if that's me awake...what is my "tired"? This one is a bit harder to describe, but I'll give it a go...

My "tired" time
This is more the feeling you would get if you've pulled an all-niter, had a full day in the office where you've had to sit through numerous meetings and remember a whole list of facts and figures, then gone and run a marathon. Your body aches, your mind is mush, you can't process anything that is going on around you, you feel dizzy and downright exhausted. You get so anxious that if you don't go to sleep right now you're pretty sure you'll start to cry.
This is me when I'm tired. This usually hits me at about 9pm.

So if I say I'm tired, or if I bail early on a party (if I get to it at all), or if I suddenly shut off halfway through a rehearsal or dinner...this is why. This is how I feel.

Next step in the journey

I'm about to embark in a new phase of attempted recovery and CFS treatment. My naturopath has set me up with an appointment with her work colleague who in actual fact treated her CFS a few years ago. 

The purpose of me seeing this other naturopath is for him to help me put together a low carb, high protein diet as well as try out some acupuncture and hypnotherapy treatments. The hypnotherapy is designed to help me to open up a pathway in my mind to allow me to get to the finish line where I am healthy again. 

At this stage I'm both skeptical and curious about the hypnotherapy. I don't know enough about it to really understand how it works. I guess my next step is to do some reading up on it and work out what questions I will need to ask next week at my initial consultation. 

The many symptoms

Whilst the name clearly indicates fatigue being a symptom, there are a multitude of symptoms that make up the disorder. Every sufferer battles with their own unique combination of symptoms. This is the main set of my unique list...

• Fatigue
• Headaches
• Light headed
• Itchy skin
• Sinus pain
• Nausea
• Chills/sweats
• Muscle/neck pain
• Heat/cold intolerant
• Lack of concentration
• Short term memory loss
• Shortness of breath
• Sensitivity to food
• Flushed face
• Hair loss
• Chest pains
• Cough
• Insomnia
• Disruptive sleep
• Unrestorative sleep
• Anxiety
• Depression
• Lowered immune system

So if you ever see me and I don't look so well...this list is probably why.

The beginning of awareness

This blog is more of a personal mapping of my journey with ME/CFS. Having ME/CFS I can't be sure that I'll blog regularly, but at least I'll have somewhere to go if I feel the need to write about my experiences.

I’ve recently been diagnosed with Myalgic Encephalomelitis (or as it’s more commonly known, Chronic Fatigue Syndrome). Since the diagnosis I’ve faced a range of reactions from people. The most common response I’ve had is “Oh I reckon that’s what I have. I get really tired”. Whilst I don’t doubt that these people do get tired, it is disheartening to realise that so little is known about the syndrome that the general public just thinks it’s a matter of simply being tired. Considering the name of the syndrome, this is not surprising.

ME/CFS is in fact a multi-system disorder. In order to get a diagnosis, the patient needs to show a range of symptoms across the immune system, endocrine system, nervous system, digestive system, reproduction system and cardiovascular system. These symptoms vary from patient to patient with varying levels of severity. I personally exhibit around 25 symptoms, with most effecting me on a daily basis. And I’m one of the lucky ones with what would be considered a somewhat mild case. There are people with it who end up housebound or even bedbound from it. So despite the seemingly simple name, it is in fact, quite debilitating.

Over the 10 years of me having this disorder, I’ve lost a number of friends as a result of me being too sick to go out. Where people might see me as being lazy or anti-social, I am actually struggling to function on a basic day-to-day level, and trying to face the added symptoms and stresses that come from being up past my ideal 8.30pm bedtime.
So without harping on about all my symptoms and struggles, I just want to help spread some awareness around ME/CFS and hopefully get people to stop thinking of it as just being tired or lazy. May is awareness month. So this is my bit to help spread awareness and understanding about a disorder even the medical community are still grappling with.