EDS Fact: Number 76

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EDS 76

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Update.

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On Tuesday I had to go for a flexible cystoscopy to have a look in my bladder. It was uncomfortable but everything looked okay and there isn’t a physical blockage causing my urinary problems, which leads us back to thinking it’s due to signals not being sent to my brain etc. I now wait for a follow up appointment with my urologist to discuss this, my MRI results and the sacral nerve implant. If I’m honest I’m really nervous about the thought of another operation but I’m going to make sure that all my questions are answered and all tests are done before I even think about it…
Today I went to an appointment with my cardiologist. He was a lovely gentleman but couldn’t really give me much more advice other than to lift my bed at an angle, drink more water and increase my salt intake. He has also put me on some new medication which hopefully will help, so fingers crossed!
Hope you are all well.
Love & Hugs, Charlie.

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Echocardiogram.

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Yesterday I had to visit the hospital for an electrocardiogram on my heart. I wasn’t there very long and it was over really quickly but unfortunately I wasn’t given any results or even a hint to say everything is okay. The report was sent to my Doctor straight away so I am hoping that I will hear something soon.
I’ve always managed okay with my joint pains before, but the past few days I’ve been struggling. It feels as though my joints are on fire, especially my hands. My hands are very red and swollen and I even struggled just holding a knife and fork earlier. I’ve put E45 cream on them but nothing seems to be helping. Does anyone have any tips on how to help the pain?
I keep having really strange turns. It might make me sounds crazy but I get a funny feeling in my head and then I start shaking as if I am having a fit but I am awake. It happened lots last night and my partner wanted to take me to the hospital. It seems to be happening a lot more frequently at the moment. Has anyone else experienced something like this?
Hope you are having a pain free day. Peach & love, Charlie x

POTS in the media.

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Today I came across this article about an inspiring young lady Crista Procopio who also suffers with postural orthostatic tachycardia syndrome. Reading her story I found myself nodding along thinking “Hey, that sounds like me!”

Crista says “I ignored it because nobody else thought it was a big deal,” and this is what I have done for so much of my life. I have been standing up and then feeling faint, dizzy, losing my vision and sometimes blacking out for as long as I can remember but I have always put it down to standing up too quickly or not eating enough throughout the day. I’ve always had a “headache” for as long as I can remember. I get palpitations and can hear my heart beat. I would feel  nauseated and vomit, often with no explanation, which even lead myself and others to think that I had an eating disorder. Like Crista, nobody took my complaints seriously until I had to pay to see a private neurogastroenterologist at the end of last year.
Articles like this are so important and and are yet another example of the need to raise awareness of POTS and other invisible illnesses. Well done Crista, you are truly inspiring.
Charlie x

http://www.cosmopolitan.com/lifestyle/news/a35147/devastating-illness-doctors-thought-was-pms/

EDS Awareness.

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Another EDS awareness picture. Feel free to share. Lets get EDS on everyone’s lips.

Update.

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Sorry I haven’t posted much over the past few days. Unfortunately my illness had gotten the better of me and after thinking I’ve been managing okay in the New Year, my body started saying otherwise. I am getting a bit better though and building my strength back up.
Today I visited the hospital for a gastric emptying study. I had two markers placed at the bottom of my ribcage. I had to drink 500ml of liquid which was a combination of radioactive stuff, water and vanilla fortisips. I had to drink a cup every 2 minutes for 10 minutes and then stand in front of a scanner for 30 seconds facing forwards and then 30 seconds facing backwards. The first scan was right after I finished the last drink and then every few minutes to start with. After the initial scans I had to go and sit in the reception area and go back to be scanned every 10 minutes. This went on for a few hours and then I was told I could leave. I have no idea how it went or when I will get the results so I just left a bit confused.
When I got home I had received a letter from the consultant Rheumatologist that I saw at the hospital last week. I have been referred to the Ehlers-Danlos Service at the Northwest London Hospitals so it looks like more trips to London this year. I am hoping that the London hospitals will be able to help me further on my journey with EDS. The consultant has also arranged for me to have a echocardiogram on my heart and I should receive an appointment for this in due course. I had no idea what this meant but after doing some research it is an ultrasound scan of my heart. I hope that I get appointments soon so that I can get help soon.
Hope you are all having pain free days. Charlie x