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Fibromyalgia
| Date: |
15 February 2010 07:00 |
| Producer: |
Esté de Klerk
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| Presenter: |
Bongani Bingwa
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| Show: | Carte Blanche Medical |
Vanathi Knight is a chemical engineer and it took years of hard work to prove herself in this challenging career. Despite the struggle to juggle her roles as career woman, wife, and mom to her daughter Rosemary and son Cole, she still managed. But five years ago Vanathi's life changed drastically... extreme exhaustion, dizziness, and severe pain in her chest, neck and shoulders took over her whole life. And daily activities, like playing with her kids, were too much to bear.
Vanathi Knight: 'It is sort of like that feeling when you come out of anaesthetics and you're in the recovery room and you cannot really keep your eyes open. It is that sort of level of exhaustion when I have the fatigue.'
Bongani Bingwa (Carte Blanche Medical presenter): 'So you couldn't function?'
Vanathi: 'Just not functioning - completely not functioning at all. The number of times I have gone shopping, driven home and not being able to come into the house... I basically put my seat down and sleep for half-an-hour to an hour-and-a-half before I have enough strength to go into the house.'
She started a frantic search for what was wrong with her, visiting her GP two to three times a week for months.
Vanathi: 'He was basically trying... obviously starting off with my family history... a few months later my GP send me to cardiologist. Cardiologist said I was fine. Then we went to the EMT, MRI scan... all of that came back saying we couldn't really find anything. But the ENT treated me with anti-virals for in case it was an inner-ear infection. Then I had various blood tests were done. They all came up with different issues.'
Bongani: 'Emotionally, how were you coping?'
Vanathi: 'Not very well at all. By the middle of the next year I got very suicidal, so the depression had really hit very, very hard at that point.'
The Knights' very social life and overseas holidays were suddenly something of the past and at home her engineer husband David struggled to cope alone raising their seven-year-old Rosemary and year-old Cole.
David Knight: 'I think the children sort of got more used to playing with me. The serious side of me wasn't there always because you are trying to spend time with them, because one of you is wrecked and asleep or totally worn out. You just can't do that.'
Bongani: 'Imagine experiencing the most excruciating pain, debilitating fatigue and interrupted sleeping patterns, and, after x-rays, CT scans, MRI scans and multiple blood tests, no one can tell you what is wrong with you. In fact, they think it is in your head. You might have Fibromyalgia.'
Two years after her symptoms appeared, Vanathi was finally correctly diagnosed with Fibromyalgia. By then nine different specialists had all misdiagnosed her from conditions ranging from inner ear infection, to irritable bowel syndrome, to thyroid problems. And she'd had a host of scans and tests. She was also sent to a psychologist by practitioners who doubted that anything was medically wrong with her.
Vanathi: 'It was quite frustrating. I think that first year there was always that hope that they might find something that they could fix.'
But there was no quick fix and, devastating for her, Vanathi had to quit her job. The family had lost her income, and also had to cope with about R40 000 worth of bills not covered by her medical aid.
David: 'We went from DINKS - double income, no kids - to a situation where we were living on one salary. The day she gave up her job I was on a contract of three hours after six months out of a work and so that was a pretty stressful morning. The bills, they are just frustrating, they just drain your month, at the end of the month there is just nothing left. The disease can destroy you.'
Rheumatologist Dr Romela Benitha says Fibromyalgia is called 'the invisible illness'. No cause can be determined yet and there is no cure.
Only three percent of the population worldwide has been diagnosed with Fibromyalgia and medically it was only been recognised 18 years ago.
Patients look healthy, but feel horrible. In simple terms, Fibromyalgia can be described as widespread chronic pain that affects the muscular system. Symptoms include and are associated with fatigue, insomnia, chronic headaches, stiffness, cognitive difficulties, and depression.
Dr Benitha says Fibromyalgia patients are hypersensitive to pain.
Dr Romela Benitha (Rheumatologist): 'A chemical called substance P, that is responsible for producing or mediating pain, is increased threefold in patients with Fibromyalgia in their spinal fluid. The second thing that they found is that certain neurotransmitters, like serotonin and nor-epinepherine, are reduced in people with Fibromyalgia as well. So substance P actually increases your pain, serotonin and nor-epinepherine reduces your pain, and because of these differences you have a net gain in pain.'
Doctors often prescribe anti-depressants and anti-epileptic medicine - to boost serotonin levels that also have a long-term effect on pain relief. But there might be an alternative.
Bongani: 'Fibromyalgia patients often hop from doctor to doctor, specialist to specialist, without a diagnosis. One alternative that may help is homeopathy and we are here to find out why.'
Dr Jacquelyn Schultz says the ways in which homeopaths and conventional doctors treat Fibromyalgia patients are different.
Dr Jacquelyn Schultz (Homeopath): 'I think the biggest difference between our approach and allopathic doctors is that we will look at a person in totality. We don't just take a condition; we don't just take a symptom. So, for example, if you have to come to my office and say to me: 'Jacqui, I have the most incredible pain, I am really exhausted, and I'm battling to get through my day.' Most allopathic doctors will run tests for anaemia, for thyroid which is another possible differential diagnoses. Once that is all ruled out, they might give you a course of vitamins, they might give you an anti-depressant because you are particularly run-down and stressed. Homoeopathically we would run a fairly extensive interview with that patient to [get] as much information as possible because the way I treat you with Fibromyalgia is very different from how I treat another patient with Fibromyalgia.'
Dr Benitha: 'There are various kinds of medications. The treatment of Fibromyalgia from a drug perspective, or from a medicine perspective, is focused on alleviating the different symptoms of Fibromyalgia because we can't really address the underlying cause.'
Both practitioners, however, use a tender point system to identify patients with Fibromyalgia. There are 18 pressure points and when a patient feels pain in 11 of these points, Fibromyalgia can be diagnosed with this clinical examination.
Dr Schultz: 'If you were a Fibromyalgia patient, these [pressure points] would elicit a lot of pain. So firstly, there are two points just [below your shoulders] here. Fairly moderate pressure - no pain. Slightly lower down [the torso], interestingly enough on the elbows, on the knees - anteriorly and posteriorly. You can stand up [as] I want to show you on your back. Just turn for me... [rubs top of back], top of the buttocks, bottom of buttocks...'
Bongani: 'Ticklish maybe.'
Dr Shultz: 'No pain?'
Bongani: 'No pain.'
Bongani: 'So all clear for me?'
Dr Shultz: 'All clear for you.'
Apart from the physical symptoms, patients can also experience cognitive problems. Vanathi had such low concentration levels that she kept on forgetting things. At some point she could no longer help her daughter with her maths.
Vanathi: 'My daughter was doing Grade 2 homework and I couldn't work out what 7 + 1 was. In fact, car guards have actually stopped me in the past trying to break into other people's cars because I'd find a car very similar and I was a few cars down from where I was actually parked. And the car guard would eventually say to me: 'Isn't that your car, not this one you are trying to get open?' So since then I've basically go to shopping centres that are close to me and I always park in the same place.'
Bongani: 'At one point things got so bad for Vanathi that she started to keep a daily journal for her husband just so that he could understand the magnitude of what she was going through.'
David: 'I would hear it differently and the penny sometimes would drop as to where she was at.'
Bongani: 'The million-dollar question: is there a cure?'
Dr Shultz: 'I don't think you can cure Fibromyalgia, but we can make sure that that patient is happy, healthy [and] as close to optimal health for them, rather than being ill all the time.'
Dr Benhita: 'We advocate exercise programs. Exercise in numerous studies have shown to be beneficial in people with Fibromyalgia; they offer improvement in pain, in sleeping, disturbances and even in fatigue.'
Vanathi has taken up exercise and recently walked two half marathons, something she thought she would never be able to do. She's still exhausted, has bad days, and takes seven different medications daily. But being able to put a name to her 'invisible condition' has restored her sanity and because she's learnt to cope. The Knights' family life is almost back to normal.
Bongani: 'How do you feel about the fact, that basically, there's no cure?'
Vanathi: 'Pretty devastating. It would be really nice to have an operation or have a pill and say you're sorted out. But, on the other hand, having a chronic long-term disease has forced me to re-evaluate my life and look at my priorities, and decide what's important to me because I can't be Super-woman, I can't do everything, I have to chose what is the most important and do just that.'
IMPORTANT DISCLAIMER:While every attempt has been made to ensure this transcript or summary is accurate, Carte Blanche or its agents cannot be held liable for any claims arising out of inaccuracies caused by human error or electronic fault. This transcript was typed from a transcription recording unit and not from an original script, so due to the possibility of mishearing and the difficulty, in some cases, of identifying individual speakers, errors cannot be ruled out.
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