Patient Y’s Journey – Dermatomyositis

It is said that stress plays a large part in auto-immune disease. There were three stressors in my life – the death of my Father, the death of my first dog, and a bad diet.

My DM kicked in immediately after Dad died – I was having a swim the day after his funeral, and could barely get out of the pool. I don’t know if you have ever worn an Xray lead jacket, because I felt as though I had six on. But the feeling quickly passed and I forgot about it.

The main symptoms of weakness (the ‘myositis’ part), and the strange heliotrope discolouration of my skin (the ‘dermo’ part) crept over me very slowly.

My dog died. I remember lying down on the bed that night, and I felt a pain and dragging sensation down the whole length of my spine. Something powerful had happened. Something was wrong with my body.

A few weeks later, I could deny the muscle weakness no longer when, having finished pruning a small tree, I put down my long-handle pruners and burst into tears. I was exhausted by what was usually quite an easy pleasant job.

On another occasion, I was walking around an art gallery with friends, when I just had to give up, because that is what my legs had done.

So I went to the local doctor. I had the tell-tale ‘haemorrhaging’ at the base of my fingernails.

I had the typical ‘shawl’ of heliotrope over my shoulders and back. I had the terrible weakness. But he wasn’t a diagnostician by any stretch, and instead wrote me off as a ‘depressed woman with a drinking problem’ (my dog had died and he didn’t enjoy a wine of an evening). Yet another doctor recommended that I have psychotherapy with him, because it was obviously all in my mind. I was beginning to think that maybe they were right.

My health was deteriorating rapidly. I think DM has more of a dramatic onset than the other myos. I could barely walk etc, had no strength to cough, and had trouble swallowing. Choking and/or pneumonia were constant threats. I continued ‘doctor shopping’. Quite by luck I found a wonderful English doctor, who recognised my symptoms and blood results. She swung into action immediately, and within a couple of months I had commenced immunoglobulin therapy. My luck continued, because I responded well to the infusions.

My English doctor spoke with me about the importance of diet, and the effect of a ‘leaky gut’. I investigated, and started eating very carefully, avoiding the things I knew my body didn’t cope with. I read as widely as I could in order to help my body. I was bloated and battling fatness. It wasn’t that I expected to cure myself, but that I simply wanted to remove any stressor in order for my body to heal.
It all worked. It was hard work, and sometimes still is. Every member of the medical profession I dealt with could not believe the speed at which I got better. I should add here that I had a fab team looking after me– I felt safe with each and every one of them. This is a very important part of recovery. I read somewhere that if you don’t feel happy with any member of your health team, you should look for someone else. I’d go along with that; there are terrific professionals out there, and you can find the right one for you.

The science and knowledge is coming through rapidly now about the role of the gut (and by association, food) on health and auto-immune disease in particular. There are some wonderful books around, written by wonderful minds. It is possible to improve your health outlook. It takes time. Coming back from the brink is possible. It’s very hard work; it is a full-time job. It’s better than the alternative. Once the corner is turned, it becomes easier. There are books now available written by people who have come back from a terrible diagnosis.

Certainly the immunoglobulin helped me enormously when I was critically ill, but I have been in full remission now for almost 10 years, and see no reason for this to change as long as I stick to my current eating habits. I wish you the very best.

Copyright 2014
The Myositis Association-Australia Incorporated

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