Changing the course of other peoples lives whilst stuck in bed!

Things are still a struggle here but I refuse to get back to the “why me?” stage again. It is me and I have to get used to the hand I have been dealt no matter how shitty it seems!

I had some great news this week, despite the fact that I have been stuck in bed on and off for several weeks now my battle for a diagnosis has not only changed my life its helping others. Which was my goal when I started on this journey.

As regular readers will know both my sister and I have Ehler-Danlos Syndrome – hypermobility (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). My family GP whose surgery I left over 15 years ago always asks my mother and father how I am doing whenever they pay a visit. This GP has been very good to my sister and supported her diagnosis of ME even in the dark ages of this illness when it was labeled Yuppie Flu by the media here in Britain. (My American readers will know ME by the name CFS) For more info on ME please visit this excellent site you will learn more in a few minutes than you ever will from me!

Our family GP has several patients on her books with ME and since my sister got her diagnosis reversed – one she had for over 20 years, the Dr has been doing a bit of research on her own. One of her ME patients has just been diagnosed with Ehlers-Danlos syndrome and as around 80% of sufferers have problems with their autonomic nervous system its likely this patient will go on to be diagnosed with POTS or one of the other autonomic nervous system issues.

I don’t mean to blow my own trumpet or sound like I am saying “I told you so” and it hasn’t changed any ones life really by having the correct diagnosis, however having a more tangible diagnosis as EDS or POTS can improve the way that you are treated by the medical profession. It also gives you some treatment options that would never be offered to you without a diagnosis. I know that this is fundamentally wrong it doesn’t matter what your diagnosis is you should be treated with respect by those who treat you. Unfortunately it doesn’t happen due to some members of the medical community having such closed minds.

Without a correct diagnosis you are left wandering around trying to figure things out on your own. You are denied proper treatment and care. As there is no cure for ME many people are left to cope on their own to try and find what works for them. If you have no diagnosis the same thing happens because no one knows who to refer you to or what treatments they should try. In a lot of cases the medical profession gives up on you and you are left with no where to turn.

 ME is a real disease that does have diagnostic tests – unfortunately many people including Dr’s seem unaware of this thanks in part to the NHS belief that there is a psychological component to ME. Patients are advised to take part in exercise regimes – to make them feel better – despite the fact it is damaging their hearts and to take a course of cognitive behavioural therapy to change the way they think about their illness. When both these treatments fail its blamed on the patients lack of willingness to engage. I could go on for hours about the awful way patients with ME are treated, but if you look at the site above you can see those peoples stories for yourself and the medical evidence from around the world that proves ME is a neurological illness.

Many Dr’s treat ME as a diagnosis of exclusion – meaning they have tested you for everything else but have no evidence of an organic disease. Many patients are told they have ME/CFS or mental health issues. The truth is many of these patients with crushing fatigue, joint and muscle pain, breathlessness, dizzy spells and palpitations have EDS or POTS or both. I would urge anyone who has been diagnosed with ME/ CFS and does not show lesions on their brain stem on an MRI or other types of brain scans to seriously consider the possibility of EDS or POTS.

Just because I have a diagnosis of POTS and EDS doesn’t mean that life is rosy now. Many Dr’s have never heard of either syndrome and you are met with a blank stare when you mention them. Medical appointments are twice as long because you spend the first 15 minutes explaining them both. The other problem is that some medical professionals say they have knowledge of the syndrome but are working on information that is out of date. Its still frustrating…. because on the whole you don’t look sick its an invisible disability so some people don’t believe you when you try and explain how it impacts your everyday life.

Once you do get the diagnosis of either EDS or POTS the treatment door is open for you. You have access to better pain management, braces for unstable joints, medications for low blood pressure etc. Its still another long journey to find the treatments that work for you. Don’t give up hope eventually you will get there. The best thing any patient can do for themselves is to find out about their condition and keep themselves up to date on treatment advances. That’s where the Internet plays a key role, we are so lucky that we have a wealth of knowledge at our finger tips and support groups/forums that can give great advice.

Thanks for reading xx

5 thoughts on “Changing the course of other peoples lives whilst stuck in bed!

  1. Hi Rachel .. Well done for pressing forward with the information you have – and I guess with your sister's diagnosis as well – your family's GP has kept her medical interest in taking closer order ..

    Hope you can get some relaxation in amongst all the inconveniences .. all the best Hilary


  2. Rach, sorry I haven't commented in a while. As you know we were without power for a week, then spent the next week cleaning up the aftermath!

    Sharing you're life with EDS & POTS serves as a learning experience for many (myself included)…After awhile we have to move past the why me stage, put on our big girl bloomers and deal with it..Sadly some never move past…you have to become a warrior and fight for a diagnosis and fight for good care as well…

    Keep on fighting…we're not crazy, but sometimes the fight almost makes us start to question our own sanity!!!


  3. Rachel,

    Thanks for your comments.

    Many people I have come into contact with have said they question their illness / sanity due to having to fight all the time and the barriers that we come across in the medical profession.

    Sometimes I feel like giving up and withdraw from the fight, only to come back stronger.



  4. I have recently met someone who believes she has EDS…she has hypermobile joints, migraines, and the other day a very sudden onset of complete fatigue !!! What a mess ???I am finding it hard to understand all she is going through..why is she not diagnosed…would it make a difference if she was ??/
    Apparently has always been 'double-jointed' and had 'growing pains' as a child..Some days you would'nt even know she was afflicted but this only lasts for a few days…she is about five foot one, petite, dark hair and huge dark eyes…like a bush baby…does this sound familiar to anyone….


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