Hi my name is Andrea. I live in Dunkineely, Co. Donegal. I have Primary and Secondary Lymphoedema.
When I found out I had it, I had no information other than the help my physio was giving me. There is no local support network available, unless I travel to Galway or Dublin for the conventions which take place once a year.
I have been on different diets since I was 14 years old. Nothing was working, I just kept gaining weight and no-one would believe me that there was something not right. I am 32 this year and I was still getting ‘bigger’.
I had been to GP’s, hospital appointments, for a stress test and to a dietician. Doctors told me I was very overweight and that I needed to diet and exercise.
However, I was already pretty active (walking, swimming and gym) and becoming breathless, with heavy-dead legs within minutes of walking. A simple knock to my legs sends pain shooting through for ages and they bruise easily too.
A year ago, I went to my doctor with a severe pain in my left arm because we have a strong family history of heart disease on both sides of my parents families. My GP told me I had tendinitis in my shoulder causing me the pain in my arm.
As the months went by the pain was getting worse to the point I couldn’t move my arm and it was so swollen and red, but again it was tendinitis I was told. He asked if I wanted to be referred to physio and I said yes.
Four months later I got a call from a physio and to come the following day for a consultation etc. I did, and when telling her my symptoms she asked me to make two fists so she could see the difference.
She proceeded to measure my arms to see the difference in how big they were. My left arm was inches bigger than my right dominant arm. The physio proceeded to ask me if I had any trauma to my left arm to which I replied ‘no, I don’t think so’.
The physio told me after inspection that I had Secondary Lymphoedema in my left arm due to trauma and would need massage therapy on it to help relieve pain, pressure and fluid from that arm. I was amazed.
Around the end of my consultation I asked the physio, ‘would that be the cause of my legs being so big my whole life and nothing fits me’. I stretched out my legs and showed her and she looked down at them and asked to examine them to which she did pressure points to see the circulation etc and she said, ‘you have Primary Lymphoedema in both legs’ – that I was either born without my lymph nodes developed, or else they were damaged.
I felt like crying and still get emotional about the fact that I now know what is wrong with me. I’m not just ‘fat’ like I was lead to believe. I have been having treatment since September 2018 on my left arm and both my legs.
The fluid has reduced in my legs a bit and my arm. My compression stockings and sleeve, help to keep it under control. Swimming is so much more enjoyable, now that the pain has been lifted from my arm.
I will need six sessions on each of my affected limbs twice a year for the rest of my life. This has been hard to take in and deal with. Nearly 32 years old and living with this condition, which would not be as severe if it had been diagnosed earlier.
Getting dressed in the mornings is tough. It takes around 30 minutes to get the compression stockings and sleeve on and then find clothes that go over the clothes that fit. Shoes are the hardest.
I am sick a lot, have swelling, extreme fatigue, temperatures as I’m mostly cold (feet, legs and hand can be like ice!). When I’m tired I simply have to rest.
Living with Lymphoedema has a massive impact on my life and every single decision has to be made around the condition.