I’m Chloe, I’m 25 and currently still live at home with my family and two guinea pigs. I have hypermobile Ehlers Danlos Syndrome (hEDS) and then several connected things – Fibro/Chronic Pain Syndrome, Raynauds, Costochondritis, Anxiety and Sensory Processing Issues, IBS, Dysautonomia, Headaches.
Before getting ill, I was dancing a lot, studying and going out a lot with friends. I can still do those now but just not as much as before. I am not working at the minute due to being too ill and struggling with work and managing me stuff but looking at doing some more studies that will help me get into a job that’s relevant to my degree and will be quite flexible.
I was quite ill as a child but nothing really connected to what I know is wrong now. I did have a few issues in my teens like headaches and anxiety. Most of my major symptoms and the pain didn’t really start until I was around 21. I didn’t really know what was wrong so went to my GP. She wasn’t too sure either so in the end referred me to a rheumatologist and he diagnosed me. I’d heard of the condition before as one of my childhood friends also has it but never considered that it would apply to what I was experiencing.
After diagnosis I joined lots of different Facebook groups to find out more and looked at lots of different charities and websites dedicated to info on it. Where I flare can depend on which elements as some things are different (headaches can get really bad, so can IBS, anxiety flares normally include anxiety attacks etc.) but generally flares involve weakness, pain, feeling sick and dizziness.
For the headaches and dizziness I always think it just feels like everything goes fuzzy and weird. For me pain is normally a dull achy sensation or an itchy/irritating sensation. I can sometimes go weeks or even months with any significant flares – symptoms till stay inbetween though just not as intense. They can mean that I can barely get out of bed or walk or do anything aside from sleep or do menial things like watch tv. Flares normally are caused by over exertion or stress but occasionally they do happen for no reason. Sleep, rest and relaxing, medicine, distraction techniques all help with the flares.
Because of my age I’ve not been offered many pain meds but do take amitriptyline for pain, sleep and anxiety. Then will occasionally take more general painkillers like Paracetamol, Ibuprofen and Naproxen for pain and for headaches. I did try Cocodamol but felt very weird and nauseous. I have Adalat for Raynauds, Loestrin to help with period pain, Lanzoprazole for GORD and Mebeverine to help with IBS. I also take a multivitamin, vitamin D and vitamin C. For me the thing that helps most is to learn as much as I can so that I know
When I first started to get major symptoms it did affect me quite a bit – I had a lot of symptoms appear at once during my final year of uni and no real answers so things didn’t go that well and I ended up failing that year and had to re-sit it. Once I got some sort of answers things did improve and I was able to manage things slightly better. I can’t walk as far anymore – like on days out I can’t go to places without my wheelchair. I can still dance but not as more as I was before. Other than that it’s just small things.
For me staying positive is important but I also like to balance it by being realistic too. I like to spread awareness, I currently help admin on a UK Facebook support group for my condition and love to help answer people’s questions there. Having my hobbies and pets also help me to stay positive too – looking after my guinea pigs, dancing, listening to music, watching football for example. Illness wise I just hope I’m able to keep managing and improving little by little. Life wise I’m hoping that I’m able to get a place at university to complete my teacher training and hopefully start a new big chapter in my life.
- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -