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New girl

Dec 08, 2015 6:52 AM

Hello everyone, I've just joined.

My name is Nikky and I'm from the uk, I'm 22 years old and have several diagnosed conditions which impact daily life in a big way and cause constant pain.

My first diagnoses was coeliac (American spelling is celiac) which causes my body to react to gluten by attacking the lining of my gut. This was a shock to me as I'd only gone to the doctors with a sore shoulder. I was 14 when I was diagnosed and it was quite a difficult time as it took them a while to be certain. This meant a lot of tests and hospitals. It was difficult to get my friends to understand what was going on but I adapted quickly and gluten free is now second nature to me.

My next diagnosis was osteopenia, which is the stage before osteoporosis where your bone density has started to decrease. Usually they would use calcium supplements to try and reverse this but I can't have them because I've got a high level of calcium in my blood due to a genetic defect.

After that, an asthma diagnosis came along, it's well controlled now but I still need a steroid inhaler through the winter to keep it at bay.

Through all of these I had an ongoing problem with severe stomach pain and weight loss which no one could explain. My coeliac was well controlled and the blood tests they did all looked fine. I should have been getting stronger but I kept getting weaker. Eventually I had an MRI scan, 4 years after the pain started, and found out I habe Crohns disease which is a condition which causes inflammation and scarring through the digestive system and other complications like inflammation of the eyes and joints. I have tried lots of different medications and had surgery to remove an area of scarring but flared up soon after. I am still in a relapse and rely on steroids to keep things at bay. I am hoping to start a new medication soon which works on a specific part of the immune system which researchers think is responsible for the damage in crohns disease.

As well as this I have suffered with joint pain for as long as I can remember. As I was growing up I was always told by doctors that it was just one of those things and that I would grow out of it - I didn't. Eventually after years of appointments I was finally diagnosed with fibromyalgia at the age of 21.

At the moment my main symptoms are coming from the crohns - stomach pain, nausea, fatigue and anemia plus uncontrollable weight loss, plus joint inflammation. I also get a lot of headaches which have been attributed to the fibro.

Apologies for the long post, I am looking forward to getting to know you all.

Dec 08, 2015 9:14 PM

Hi, nice to meet you. I'm 15 and I guess my big diagnosis had been CRPS/RSD/RND there are too many names!
I mostly have nerve pain, slight nausea, migraines, hypothyroidism, genetic issues, and asthma.
Sorry you're dealing with all of this, just want you to know you're not alone. I'm in the US...

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