Living with Raynaud's and scleroderma

  • Deborah Condon

1/4/2014

When Meadhbh Cleary was 17 and on holiday with her family in Italy, she jumped into a swimming pool during a heatwave, only to become ‘unbelievably cold'. She had to get out of the water within minutes as her fingers had turned a blueish/white colour and ‘swelled out like sausages'.

Little did she realise that this was the first sign that she was suffering from a condition that affects around 10% of the population - Raynaud's disease - and she would also go on to develop an even more serious condition - scleroderma.

Raynaud's is a condition in which the blood flow that circulates in the fingers and toes is constricted. It results in major changes in the colour of these extremities, from white to blue to red. This occurs in response to even moderate cold or stress, leading to numbness and pain, which can make ordinary activities difficult or even impossible.

According to the support group, Raynaud's & Scleroderma Ireland, the condition ‘is not the same as simply having cold hands or feet'.

The cause is unknown and around 10% of the population are estimated to be affected.

For Meadhbh, who lives in Dublin, that holiday in Italy was the beginning of a long journey. Now about to turn 28 and a secondary school teacher, she has to deal with two conditions that many people simply know nothing about.

She herself was completely unaware of them which meant she dismissed or hid some of her symptoms over the years, partly because she did not want people to think she couldn't cope with things.

After that fateful holiday to Italy, Meadhbh started fifth year in school and over the next two years, she experienced increasing joint pain, especially when she was writing. Her finger tips would become numb and they would take on a concave shape if she was holding a pen.

She then had the daunting prospect of trying to complete her Leaving Cert, where writing pages and pages of material in a three-hour period is a prerequisite for good results.

"I did the Leaving Cert in intense pain and I thought I'd fail. I remember one exam where I just couldn't write for 20 minutes because of the pain. After the exam, I complained about how much pain I had been in, but everyone said the same thing, so I just thought it was normal. I never thought anything could be wrong with a person's hands," she said.

She also began to notice that if she got paper cuts, they would not heal for five or six weeks. She did not realise that these were actually small ulcers.

However, despite all of this, she did pass her Leaving Cert and went to college to study to become a teacher.

Meadhbh noted that she did not get the typical symptoms of Raynaud's, such as the change in colour of the fingers. In fact, after that holiday in Italy, she did not experience colour change again until she went to college.

However, the condition reared its ugly head again at exam time, when she had to write through the pain.

"My first year college exams took place in a draughty church, it was extremely difficult," she admitted.

It was her second year in college when she was finally diagnosed with Raynaud's. She had been on holiday in Prague in the October of that year when two of the fingers on her left hand went ‘completely blue' for two days. She was very frightened by the experience and went to the college doctor as soon as she returned to Ireland.

Within just one consultation, the doctor was able to diagnose Raynaud's.

"She told me it was unlikely to lead to anything, but I didn't know what ‘anything' was. I didn't know what to look out for," she said.

After the holiday in Prague, the colour changed in her fingers ‘on a daily basis'.

She found that her overall quality of life started to decrease.

"I didn't want to get out of bed in the morning because I knew as soon as I left the warmth of the bed, I'd have a Raynaud's attack. Once my feet hit the cold floor of a shower, I'd have an attack," she explained.

With Meadhbh, a Raynaud's attack lasts about 20 minutes. During that time, her fingers go numb and are ‘not much use'. However, she cannot just put your hands on a radiator or in hot water to warm them up.

"During an attack, you lose sensation, so there is a threat of burning. As the fingers are coming back to normal, which for me takes around 20 minutes, they become hypersenitive so you have to allow it to happen slowly, in its own time," she said.

With the condition, the only advice she was given was to use pre-emptive measures - in other words, to be prepared for a possible attack by, for example, wrapping up and always having gloves with her.

Meadhbh started attending a consultant rheumatologist for the condition. As part of her care, she had blood tests carried out and one of these revealed that she had the potential to develop scleroderma.

Among the estimated 10% of people with Raynaud's, around 2% will also go on to develop scleroderma, a disease of the immune system, connective tissue and blood vessels. Excess collagen is laid down in the skin causing it to become hard, stiff and shiny. It can also affect the body's organs.

Like Raynaud's, the cause is unknown but Raynaud's is usually the first symptom of scleroderma and may occur many years before any other symptoms.

However Meadhbh's rheumatologist did not tell her these results, so she was unaware of the risk.

When asked if she wished she had been told at this point, her answer is a firm yes.

"I am part of the internet generation. I want to have as much information as possible," she said.

When Meadhbh was about to start her final exams, she developed a bad ulcer on the middle finger of her right hand. Obviously worried about her exams, she made an emergency appointment with her rheumatologist. The doctor increased her blood pressure medication in the hope of increasing blood flow to the tips of her fingers, but ignored the ulcer.

She ended up going to her GP, who basically had to numb the tip of her finger - not something a person with Raynaud's wants to have done - so that he could open the tip and clean out the infection. He showed her how to clean out the wound as well. However, her bandaged finger now throbbed with pain all the time.

The GP recommended that she be allowed use a laptop for her finals and her college thankfully agreed.

"It was a world of difference, typing instead of writing. Writing with a bandaged finger would have been difficult anyway, aside from the pain," she noted.

Meadhbh successfully qualified as a teacher. Disillusioned with her rheumatologist, she decided to change to a different one the following winter, however in the meantime, she attended a new GP because of a sore throat, and he had some shocking news for her.

"He saw my blood test that the original rheumatologist had carried out and he told me very insensitively that I had scleroderma. By this stage, I had heard of the condition, but he told me ‘that's the one with bird-like features. Your hands will end up like claws and your face will go pointy'. I was only 23," she explained.

Meadhbh emphasised that there is ‘very little awareness' of these conditions ‘even among doctors'.

She suffers from systemic diffuse scleroderma, which means that it can affect the entire body, including the organs.

She used to have her heart, lungs and kidney checked every year, but now has them checked every six months. An over-production of collagen can lead to a build-up in the organs of some people. This can lead to conditions, such as pulmonary fibrosis, which occurs when lung tissue becomes damaged and scarred. This makes it hard for the lungs to work properly, leading to shortness of breath.

But what does having scleroderma mean on a day-to-day basis for Meadhbh?

"If you glanced at me, you probably wouldn't notice anything but there are obvious signs. If I try to make a fist, I can't - you could drop a pencil through the space in my hand. This means I can't grip anything very narrow. The skin is very tight, the pulp in my fingertips is gone and my nails are curved," she explained.

She said she can write a bit, but only for around three to four minutes.

"If I'm correcting copies, I will do half a batch at a time. It ends up that I have to do a lot of work at home. If I had to sit down and write a letter, I'd be in a lot of pain, which is scary in itself, but I don't want people to think I'm incompetent.," she said.

Fatigue is also a big issue, as is her age.

"I am unusually young to have scleroderma. A lot of women already have children when they are diagnosed, but as I don't, I don't know how the condition would affect a pregnancy. Every case is unique and I simply don't know," she said.

There are medications you can take, but these are dependent on the patient. Meadhbh takes blood pressure medication for her fingers and reflux medicine.

Some people are given steroid medications and some require IV medication in hospital.

Meadhbh is much happier with the rheumatologist she now attends. She said that prior to her second appointment, she emailed 30 questions to him that she wanted answered. He went through all of the questions, but even he could not answer everything, so she wanted to make contact with people who possibly could.

She contacted the support group, Raynaud's & Scleroderma Ireland, and it said that it was very interested in starting up a support group in Dublin, and asked her if she would be willing to get involved.

The group, which meets in Swords every six to eight weeks, is now in its third year. Up to 10 people attend each two-hour meeting and aside from the support they give to each other, there may also be guest speakers who come along to discuss relevant issues.

There are now a number of support groups around the country, including in Cork and Galway.

Meadhbh emphasised the importance of good support and increased awareness when it comes to these two conditions.

"Yes, we make up a tiny population, but it really would make a world of difference if people were more aware of these conditions. If people could anticipate and facilitate us, for example, by having radiatiors on.

"The mental health of people affected can be fragile because these conditions are not easy to explain," she added.

For more information on the Swords support group, email meadhbhcleary@gmail.com

For more information in general, see the Raynaud's & Scleroderma Ireland website here

 


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