"The symptoms were endless and it felt like years before I was diagnosed"


I am a young girl of 17 who is sharing my story of how I have coped with Primary Raynaud's over the past few years, on behalf of all young Raynaud's sufferers. I think it is so important for young people to share their experiences especially as it can be so hard to deal with alone.

In 2009, I started to diet and exercise more; as a result I lost a couple of stone in weight. I then started to notice my first set of symptoms of Raynaud's. I constantly felt cold and was beginning to feel numbness in my hands and feet. The only way I would feel better was to sit in the bath but even then my feet would turn black, white and purple. I did not know what it was and it started to worry me. School was a real struggle as my feet were so painful and it hurt to walk around all day. I would never know what to say to people when they asked why my hands looked so 'weird'. I began to wear long-sleeved thermal tops that would cover my hands as much as possible. The pain was excruciating and I dreaded every day.

The pain was getting worse and I really started to struggle. I went to my GP who didn't see anything wrong with me. I was so upset that they couldn't see what I was seeing. It took a few times of me going to the doctor before they finally referred me to a rheumatologist in children's outpatients. I had to endure blood tests to rule out any other causes and in the summer of 2010 I was told to keep a diary of symptoms.

Looking back at what I wrote in the diary, I was really shocked to see that I was struggling so badly. I wrote "my hands and feet are throbbing'', ''my knuckles are purple'', ''my hands are so painful'', ''my finger is swollen'', ''writing is such a struggle'', ''my legs are all blotchy'', ''I feel so weak'', ''I am struggling more than ever today, and can't even open a bottle''.

The symptoms were endless and what worried me even more was that this was only in the summer! It felt like years before I was finally diagnosed. The hospital sent a letter to my GP explaining the condition and I was happy to have finally got some answers. After a few more appointments at the hospital I was given medication!

I smiled from ear to ear and could not wait to try it out. I was given GTN patches (glyceryl trinitrate) which slowly open my blood vessels to allow better circulation. I started off wearing 2.5 mg of the patch and now I have to wear 10 mg for it to work efficiently. Although there are side effects of migraines and dizziness, they have helped me so much.

I continued to go to the hospital because they found a problem with my knee as well as lacking stamina in my hands. I was also told that I was hypermobile and very weak. They said that physiotherapy was the best option in order for me to be able to cope better. They gave me a leaflet about the RSA and I decided to order some silver socks and gloves which have benefited me so much.

Recently, I went to my hospital appointment where they checked my circulation and strength. They were so happy with my progress and the doctor told me how proud he was with how far I have come. "A little star" he exclaimed. I was ecstatic that, after suffering for such a long time, I had finally found medication that made it bearable. They said that I am really good at coping with it and I am capable of controlling it through the use of painkillers and patches. I really thought that this day would never come. I was so relieved. My hard work and not giving up really paid off!

Of course I still have really down days where I ask myself why I was given this, and why I have to try to cope alone. With the recent cold weather and the amount of stress due to my A-level exams, I have been in so much pain and it really has been hard. When my friends ask me what's wrong I try to explain to them, but it is hard for them to understand because Raynaud's is not well known and I "don't look sick".

I receive extra time in my exams and they make sure I am sitting somewhere warm to prevent my hands going numb. This is a prime example of why people should not hide their pain or what they are going through. Despite whether they fully understand or not, they will always do their best to support you and the more they know, the more they can do exactly that. I am so glad I came across the RSA because it has helped me to keep in contact with people just like me, who share the same pain and experiences as I do.

Many people may be looked upon as being weak or lazy, but if they understood what we have to deal with every day of our lives, they would see we are people with incredible courage, strength and perseverance.


Amy's story was provided by the RSA - the Raynaud's and Scleroderma Association.