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Living with fibromyalgia

Published on 13/09/18 at 01:58pm

Scottish comedian Carina MacLeod recounts her life with fibromyalgia and the benefits of comedy in dealing with a chronic condition, explaining why laughter can often be the best medicine.

What was the process through which you first began to develop the symptoms of fibromyalgia?

The first time that I knew something was wrong was probably about 10 years ago. I was away filming up in the Isle of Lewis. We were filming a period drama that was set in the 70s and I had an adverse reaction to something. The following night I woke up, and my arms were burning, my skin was really itchy and my face was swollen. I went to the doctor and was just given a steroid injection, and then for the next nine months I was plagued with what the doctors were saying was urticaria. Then all of a sudden the symptoms just disappeared.

Ever since that first moment, I’ve experience a catalogue of very strange symptoms. A couple of years later I began to develop really itchy eyes, but only in the morning and at night; I had recently gotten married and at first I thought I was allergic to my husband. I went for a series of tests and then I started to develop pains under my arms – I was very worried. I had to go for a mammogram and I went through I don’t know how many skin tests, blood tests and throat swabs – everything was coming back normal. It was a consultant that mentioned about five years ago that they thought it could be fibromyalgia but they didn’t know much about it, so it was kind of dismissed.

After that I started to go to the doctor with stomach pains and bowel problems. I became paranoid; at that point the doctor thought I might be a hypochondriac. Then the doctor looked at my notes and mentioned that a number of years ago there was talk of fibromyalgia.  He said ‘I feel we need to get you tested for this since you have now gone through everything else’. So last year, in March 2017, I got an appointment. I was then diagnosed with fibromyalgia and osteoarthritis.

What were your experiences with the diagnostic process?

In many ways I felt that the diagnostic process was not handled particularly well.  Fibromyalgia was spoken about five years prior to me being diagnosed but it was dismissed, as the doctors didn’t know enough about it. I did know of a friend who had mentioned it to me around that time. However, I mentioned it to my doctor then and he dismissed it as well. He said that there were a lot of contributing factors and he said to me that one of those factors is psychological; it made me question whether I was just making it up and whether it was all in my head. However, I feel that he’s changed his mind about it now. I have a very good relationship with my GP and he was very honest and said that fibromyalgia has split the medical profession. He essentially said that some doctors don’t believe it exists and others do. However, in the last year he has been quite supportive of me; his attitude has changed.

Fibromyalgia is often particularly hard to diagnose. Have you found that people are sceptical about the condition?

There are a lot of people that are really sceptical about fibromyalgia. When I tell them that I have a chronic and debilitating illness, you can practically see them thinking: ‘she looks completely normal’. I have found that there is a huge stigma attached to fibromyalgia. Enormous! However it is possibly only in the past year that the condition has been brought to the forefront. The fact that Lady Gaga suffers from it has brought the disease to people’s attention. I think that people think ‘if Lady Gaga suffers from it, it must be real’.

Is the desire to spread awareness about fibromyalgia part of what has driven you to pursue stand-up comedy?

Totally! I’ve done stand-up for five years, but when I was diagnosed I thought people really need to know about this. The response has been incredible. The key to the comedy value of fibromyalgia is to be completely honest – that’s where the humour lies. It’s a no holds-barred show, and I do go into graphic detail.

The fibromyalgia sufferers completely get it; I did one show and I could see a fibromyalgia sufferer agreeing with everything I said. I also did a show in Liverpool in June, and a girl came up to me and said ‘you’ve really gone into detail’. People think fibromyalgia is just chronic pain. If it was a film, that’s how it would be billed. People don’t realise that it affects your mood – you get anxious for no reason, you get depressed, you have no control over things. One minute it can affect you so badly that you can’t leave your house. People don’t realise that fibromyalgia causes all of these symptoms. If I covered every symptom, my show would be three days long.

Has comedy helped you to deal with living with fibromyalgia?

I definitely think comedy has helped. I found out how useful comedy can be quite recently. I find that it helps if I’m brutally honest. I was at a festival in the queue for the toilets and I shouted out ‘I’ve got fibromyalgia and stress incontinence! I really need the toilet’. And you see people laughing. They’re more inclined to not get angry with you in that kind of situation. If you add an element of humour to anything, people are less likely to feel aggrieved.

What treatments have you received for fibromyalgia and which ones have you found effective?

Since being diagnosed with fibromyalgia, I’ve gone through the list of painkillers. I was prescribed co-codamol (codeine/acetaminophen); it doesn’t agree with me. I’ve been described amitriptyline and that doesn’t agree with me either. I was given dihydrocodeine – I could have very easily become addicted to that. Then I was plied with anti-inflammatories.

In the end, I’m fine with ibuprofen and tramadol. I tend to not take them too often. However if I’m really sore at night I tend to take them, otherwise I tend to battle through the pain. I’ve had so many people come to me with different advice suggesting that I try herbal remedies or say for example cannabis oil. However I think it’s important to go with whatever suits you. Quite frankly I’m okay with the painkillers. I’m at an age now that I don’t like change. If I find something that works, I just stick to it. However, if I had the bank balance of Lady Gaga I’d be trying everything under the sun.

What problems have you noticed in regards to the way in which fibromyalgia is treated in society? What changes would you like to see?

I’d love to see the split in the medical profession change. I have a friend and I would put all the money in the world on the fact that she has fibromyalgia. However, she mentioned it to a GP and they wouldn’t entertain it. We have to be open to the fact that it does exist.

I’d especially like to see more funding towards research. There are now more fibromyalgia sufferers than dementia sufferers in the UK. While I’m much more fortunate than others, there are people in wheelchairs – I’m lucky that I’m still mobile. There needs to be more awareness of how debilitating the condition is.

Do you have any insight into what the causes of fibromyalgia might be?

There’s a widespread belief that fibromyalgia is brought on through trauma. A lot of fibromyalgia sufferers I have talked to agree. I would definitely say that a lot of cases that I know of have been brought on by trauma; I know a lot of people whose symptoms developed after the death of a sibling. I am firm believer that it has a connection to traumatic events.

What advice would you give to those who have recently been diagnosed with the condition?

If you’ve recently been diagnosed with fibromyalgia, don’t give up. Don’t let it take over your life. Don’t let it consume you. Once it starts to consume you, you won’t want to do anything. You won’t want to go out. You have to have courage and fight it all the way. If not, come and see my show and you can laugh about it.

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