Listen to your gut instinct.


Chlo's Story


Age: 16-24

A little bit about my journey:

My Diagnosis

RA,hypermoblity syndrome,epilepsy,pcos,autism,tourettes,dyspraxia and other undiagnosed stuff.

Time to Get Diagnosed

Hard one to say symptoms started at age 10 I think but everyone thought it was due to my ticks from my Tourette’s.

Year I was Diagnosed

2019 end of last year.

Sending Love to

My rheumatologist Dr V Quick

Hospital I'd Recommend

Luckily I have a good doctor at my local.

This is my story:

Hi my names Chlo ever since I was young I’ve had disabilities as mentioned above but not chronic pain. When I was 10 years old we went to see my regular paediatrician as I was having verbal and motor ticks and got a lot of joint and muscle pain which we put down to ticks or as I thought RSI from them. My first symptom was sausage like fingers and were deformed which everyone thought was my tics too. I saw a plastic surgeon about an operation to straighten them. He looked at them and said he would have to keep doing it over and over because it wouldn’t work. Then I was referred to I think it is ot for finger splints It worked for a bit but a few months after the splints came off it started again. In 2016 I developed a pilonal sinus and was in agony. We went to the gp who diagnosed a skin infection and gave me antibiotics. A couple of days later and I was screaming and writhing in pain and my mum called the gp who came out and spoke to the surgeons on his phone. We went in the car to hospital which was agony for me and I had iv pain meds. The lady in the er didn’t put the iv in properly so i ended up having 3 ivs in in total which kept falling out. That evening I had the operation to drain the abscess. Since that time I’ve experienced chronic nerve pain there and no doctors been able to tell me why. I have my theories that a nerve got pinched by accident in theatre. Within a few months of the surgery I got more intense joint and muscle pain went to several doctors for it who said oh it’s just growing pains or a mineral deficiency. It turned out I was deficient so I thought oh atleast that will cure the pain the supplements it didn’t. I got a referral for an ot place again who diagnosed me with hypermoblity syndrome which explained a lot within 2 visits I was promptly discharged with no proper plan. Then soon the pain increased it started out in my wrists which were puffy and my fingers I’d had puffy fingers and hands since young which everyone thought was due to my tics. I went to the doctors a few months later who again referred me back and sent me for an X-ray which showed mild cartilage damage which was strange as I had severe pain in my knees and various other joints. The lady at the ot diagnosed me with osteoarthritis to begin with which You just don’t get at my age. I had blood tests and that was when the idea of RA first came up when she saw my hands and fingers. I saw the rheumatologist who said I don’t have osteoarthritis I’m too young as it’s wear and tear. She used an ultrasound on my fingers and wrists which showed severe inflammation and said I had seronegative rheumatoid arthritis and gave me a injection. Then put me on chloroquine to begin with which didn’t help and eventually methotrexate and my difofenic gel as the other meds the gp gave me didn’t help. I think I will need more medication for my arthritis as I’m still in a lot of daily pain. It helps to know there are better days and I can get through this journey I didn’t ask for

Let’s play 20 questions:

The song that keeps me going is:
You are loved Josh Groban
I never leave home without my:
Ear defenders,my voltoreal gel,my handbag,my wheelchair for long distance and my sun glasses.
My go-to feel better movie is: 
Ah that’s a tough one anything to do with fish.
If I was in the hospital, the celebrity I would most love to visit me would be:
Josh Groban
When I need to relax, I:
Lay in my bed with my bunny mr cream and parsley my mums teddy bear and do my colouring book.
My favorite food is:
Cheese pasta
The quote that keeps me going is:
God gave me this journey because he knew I could handle it.
When I need a laugh, I:
Make jokes about myself,
Meet my pets (or favorite stuffed animal):
My golden Labrador Lola she’s 10 and her sister Bonnie who’s black and 10 too. They’re from the same litter. Their birthday is January 29th. And my fish and my bunnies and other cuddlies.
My hero is:
Any other people with chronic illnesses.
When I’m having a down day I binge watch:
The simpsons.
My favorite book to get lost in is:
I haven’t read for a long time due to a condition I don’t want to share.
I want to be best friends with:
Anybody like me. Maybe Stephen Mulhurn he’s funny.
The thing I’m most proud of:
My family and my fur and scale children.
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
I don’t take things for granted and it’s made me a stronger more grateful person.
The most hilarious thing that has happened to me is:
I don’t know
It really means a lot when someone does this:
Understands when I’m struggling to walk or can’t do stuff and doesn’t assume I’m lazy or unfit.
My favorite social media account to follow is:
Marthas fight she’s inspires me to advocate for me.
The advice I would give to myself back at the beginning of this journey would be:
You can do this you can handle anything life throws at you.
Words of encouragement that I’d give to my fellow warriors are
It is hard but you can do this and listen to your body and not be discouraged by others or medical professionals.
Follow my journey:

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