Chronic Fatigue Immune Deficiency Syndrome Sufferer - Natasha's Story, Wales

by Tasha
(Wales)

I have Chronic Fatigue Immune Deficiency Syndrome and I have been diagnosed with an auto-immune disease, for about five years now. Although I was prescribed various medication for the auto-immune disease, I have honeslty never felt 'right'. Over the past two years, I have had to deal with new symptoms, one after the other. And I have been putting up with the debilitating fatigue.

Unfortunately, every GP (doctor) and specialist I have seen, have not been very sympathetic, and have put all symptoms down to my auto-immune problem.

I have good days - I know I shouldn't complain that much, as I know there are those who suffer much more. But on my bad days, I struggle to get up and down the stairs. I physically throb with pain and stiffness, from head to foot. I suffer painful spasms in my hands and feet. I suffer with terrible Irritable Bowel Syndrome symptoms, dizzy spells, headaches, the list is endless.

I am a nurse and I struggle to go to work. I am currently working full time, as financially I need to. I have to travel a lot, which some days I find exhausting. I want to enjoy my life, and yet here I am, at 28, and feeling like an old woman. I try to make sure I rest during evenings and weekends, but then I feel that I am being a burden to my partner, who, naturally wants to go out and do normal things during our spare time.

I have tried to lose weight, and have done, but it is very slow. The problem is, due to my low metabolism, I need to go mad with the exercise to lose anything. But then I find I am tiring myself out too much. So then I cut back with the exercise, and then my weight goes back up... I feel that it is a never ending process, trying to get a balance.

I have recently started to take fiber supplements and probiotic supplements. I have had to find them in tablet form, as I cannot have dairy products (so Yakult drinks are a no go.) Since taking these, my Irritable Bowel Syndrome (IBS) symptoms have relaxed a little, and so I am very pleased with this. I am trying to have daily glucosamine, and Eye-Q, to help with the joint pain.

As I mentioned earlier, I am a nurse, and so am wary of medication, such as anti-depressants and morphine type pain killers. I try and get by on Parecetomol and Ibuprofen, but some days these are ineffective.

I suppose that Chronic Fatigue Immune Deficiency Syndrome is a long term problem, and I know it can come and go. But I really am at the end of my tether now, and would appreciate any tips on how to manage Chronic Fatigue Immune Deficiency Syndrome, and how to get my GP to listen.