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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.

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

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Lyrica
by: Judith Chase

I am now recommending Lyrica for anyone with Chronic Fatigue Syndrome and Fibromyalgia! It has worked a miracle for me.

I am now taking 75 mg of Lyrica per day after starting at 50 mg/day for 2-3 weeks. This increase in the dosage has made all the difference. My doctor wants me to wait 6 weeks and then see her again to see if we need to increase the dosage.

Lyrica decreases the pain so much that I am feeling a great deal better and I have more energy.

You are not alone
by: Mitch Nix

Dear Tasha,

I'v only just found this web site, but I wish I had found it two years ago when I was first diagnosed with Chronic Fatigue Syndrome.

I am also a nurse, working in Leeds - at the time of my diagnosis I was a Night Nurse Practitioner and my job was very stressful and demanding. Added to this I did a lot of the child care and taking our daughter to school and picking her up each day, as my wife also works full time.

Consequently after several years of this I collapsed and was diagnosed with Chronic Fatigue Syndrome.

I am very luck in that my GP has been superb, very caring and supportive. He referred me to our local hospital in Harrogate to their chronic fatigue and pain services, and they really helped me too.

I got advice on changing my lifestyle, pacing myself, and have also seen a clinical psychologist who has helped me deal with the anxiety, depression and my personal feelings of failure and self worth.

My family and some of my frineds have been fantastic too, and I could not make it without them.

Like you, I did not want to take antidepressants at first, but after a few weeks when the neurological pain was not responding to regular analgaesia, I suggested to my GP that he try me on amytriptiline, as it is useful with chronic pain. He was happy as this was his antidepressant of choice.

I can honestly say that it made a big difference, and after several weeks I suddenly realised and accepted that I had been depressed.

I now take a small maintainance dose of 10mg nocte, upping it to 20-30mg when I am having severe sleeping problems.

Like you I still need to work full time, but when I returned to work after 8 months off sick I was redeployed to a simpler (and less well paid) job. I still have times when work is difficult, and some of my management are understanding and some are not!

Half the battle for me was accepting I was ill, and then getting others to understand it too. I am a big, robust looking man, and people cannot see that someone who looks so fit and well can feel so ill and lousy so much of the time.

I really do understand a lot of what you are going through. Why not reconsider the antidepressants, and ask your GP if their is a local Chronic Fatigue Syndrome service you could be referred to?

Things that might help
by: Judith Chase

If I were you, Tasha, I would look for another doctor who specializes in treating Chronic Fatigue Immune Deficiency Syndrome, and who is receptive to you, will carefully listen to you and take you seriously.

Yesterday I tried a warm therapy pool at a community center here in Santa Fe, New Mexico, U.S., and I did a few exercises, stretching, and just floating on my back for an hour. I felt fantastic afterwards. But this morning I am stiff, of course. I will continue the therapy pool and hope that it may help and that I can even lose weight doing this. I have very little pain and when I do, I take two Aleve, per my doctor.

My greatest problem has been the chronic fatigue and a back problem. The most recent research casts doubt on whether the immune system is really the problem.

Do try anything and everything that may help you; hypnotherapy, acupuncture, a therapy pool, etc. until you find something that truly makes a difference.

I wish you luck in finding a good,knowledgable and receptive doctor!

Chronic Fatigue Immune Deficiency Syndrome & Working As A Nurse?
by: Sleepydust

Wow - you have all my admiration Natasha. Working as a nurse when you have Chronic Fatigue Immune Deficiency Syndrome cannot be an easy task.

When I read your experiences about unsympathetic doctors, it unfortunately echoes similar experiences from so many other sufferers all over the world. You only need to read a few of the personal stories in this section to see testimony of this. It seems that this is the reality that many of us are faced with.

There's a page about facing skeptical doctors when you have Chronic Fatigue Syndrome here in fact...

But it doesn't mean that you've reached a brick wall. There is always a way round. It could mean getting a second opinion or even changing doctors, for example. There are many understanding, knowledgeable health professionals out there. It's just a case of finding them. I recommend getting in touch with your local ME/CFS support group and asking them if they recommend any good local doctors in your area.

I really hope that you manage to find some relief and support Natasha. Please feel free to browse through the Sleepydust web site for more tips and information.

Wishing you all the best

Claire
Sleepydust

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