Chronice Fatigue Syndrome, any advice?

Question

About 3 months ago I was diagnosed with CFS. It's been almost unbearable as I've been trying to get a degree and it has been loads of hard work. The NHS have been rather unhelpful. I've been told to have CBT (cognitive behavioural therapy) and graded exercise therapy but the waiting list on the NHS is terrible and can't afford to go private. Do any of you have this? Have you got any advice on what is very useful for this? Please only answer if you have had direct experience or know someone who has. Thank you.

Answer 1

Try adjusting your eating. Cut out pop or sugary drinks. Eat every 2 1/2 to 3 hours. Make sure to eat a good breakfast and then snack through the day and have a good lunch and dinner.

I know I get terrible fatigue if I don't eat well and exercise, because my body was made to eat well and exercise, so without it it starts to slow down. So try speeding up your metabolism by eating well and exercising at least 1/2 hour per day. This will stop blood sugar crashes.

Answer 2

My daughter had this after Glandular fever.
It is an awful condition but you know that already, heres how we coped;
Good food and a vitamin supplement and lots of drinks
She listened to her body (sorry that sounds trite) if she was tired she rested but if she had an assignment she would have it by the bed and do it in tiny bits sometimes a sentence at a time.
If she had energy --gentle walks not to tire but to keep the energy going .It seemed a little energy could be built on and last a while before the next ~slump~.
As her parents we encouraged, cajoled and yes sometimes got cross. All the time we supported her and she knew she could cry and be depressed but we would pick her up and do all we could.
The attacks became fewer and less severe as time went by.
She got her degree we got our energetic daughter back.

There is an end to it without NHS intervention but you will need support from friends or family. Then when NHS comes good you will have fought some of the battle yourself.
Keep fighting, you can do it. We did.

Answer 3

Firstly re your degree - see your university / college disability adviser there may be adjustments to your course that could be made to help you or a scribe service ect that you have a right to access due to your condition.
I agree the NHS can appear unhelpful, there is still this stigma with (CFS) which means services are difficult to access, my advice would be to use an advocacy service - usually advertised in your local directory to help you access therapies and CBT is a pretty drastic therapy for your condition, then there is a couple of books written by a well known (ME/CFS) specialist Dr Ho Yen- he is Highland based but his approach to these conditions are brilliant, I know another book, especially with being on a degree but it really has made a difference to my patients lives to follow his advice. Good luck Cx

Answer 4

You definitely have a tough situation with your health and school. I'm sure you know that a good diet is important with this condition. Avoid junk food, coffee, cola drinks and high fat food.

I have this condition and what I have found that helps me the most is taking the supplement Co Q10 in soft gel form, 100mg three times a day. Within two weeks you will feel a tremendous difference. I've enclosed a link to a website that sells one of the best brands. It is not a cheap supplement, but it's one of the best for chronic fatigue.

Be sure you take a good quality multi vitamin every day. I like GNC - Muli Gel. It absorbs into the body better than most vitamins and is very inexpensive. You can get this at www.gnc.com or at drugstore.com

if you have any further questions please let me know,
Billie77

Answer 5

I have it, brought on by glandular fever, stress at work (full-time), two kids (one a toddler) and a husband in a war-zone! Fortunately I was diagnosed by both my GP and company doctor.
CBT was recommended and I was sent to an NHS clinic running out of a private hospital some miles away. It probably helped, but I can't actually remember much of it, bacuase of my condition at the time. I know I filled in a lot of forms, which was exhausting. I had to keep a chart of exactly how I spent each day - when I got up, ate, rested, lost time, slept, got food for kids, etc, etc, down to the last half hour. I also had my timetable discussed with me, together with suggestions. I was on some medication, but since a major problem was memory loss, I found it difficult to keep track of whether or not I'd taken them.
Looking back now, I realise that CBT and those dreadful timetables, enabled me to work to scheduled rest times. I had to learn not to push myself to finish things, but rest when I needed to -even if it was halfway through the washing-up. I learnt to relax more effectively. And I learned to take pride in the times that I did finsih something, setting myself small targets and building up.Eventually I was able to use the time to build my daughter a dolls house from a kit. If I did even a little each day, I could see the difference. Something like that really helps. Of course there were still days when I couldn't even walk up the stairs.

I found that my diet affected me. Coffee was particularly negative, I'd get dreadful pains in my lymph system. Copious amounts of vitamin C, zinc and selenium helped. The zinc and vit c are important because you are very vulnerable to infection and even the slightest cold can have a devastating effect. Regular massage helped me. The massage therapist was able to read my body better than I could and knew when I needed lymph drainage, or de- stressing or energising. She helped greatly with advice on supplements also. My GP was very supportive of all the alternative therapies.

It is long haul. I am now 7 years down the line from when I was first diagnosed and have had to dramatically change my life style. At the worst time, I was phobic about all sorts of weird things - seeing people, talking on the phone, going to the post office. And I have great chunks of memory missing. I have had to rebuild my life being aware of my limitations. My kids have had to get used to there being times when I CAN'T take them wherever, or be relied on to make sure they have the right PE kit.

Ghastly though it was at the time, I do recommend doing the timetables. At least that way you have a way of measuring the miniscule levels of improvement and that is wonderfully reassuring.

If you want to talk more, email me.

Answer 6

I am not a expert but CBT is for mental health problems and I thought that CFS has now been recognised as a "real " condition. I would go back see a diffrent doctor. Good luck.

Answer 7

Hi there, everything everyone has answered is correct, but everyone is different.

My daughter has had ME/CFS for 8 years, but is now getting better, but she has had to work it out for herself, with pacing and grading her excersise.


Chronic Fatigue Syndrome

Unfortunately, there is no proven or reliable cure for CFS. However, studies have found that individuals with the best chance for improvement are those who remain as active as possible and who seek some degree of control over the course of their illness.

You have been diagnosed with CFS, by I presum your doctor, have they suggested any self help groups in your area, is there any specialists you can see?

Although there is no hard and fast treatment for CFS, experts say that these lifestyle changes can help:

Regular, carefully planned exercise, which helps by providing healing movement, increased energy, and feelings of well being. Exercise should not be extreme - people with CFS should always pace themselves while doing any physical activity that requires exertion.

Stress management and reduction techniques, which teach strategies for taking control over certain aspects of the illness.

A healthy diet, which can minimize symptoms and general discomfort. Doctors agree that people with CFS should avoid heavy meals, alcohol, caffeine, and large quantities of junk food. Some people find that a registered dietitian or nutritionist can suggest menu plans to help reduce symptoms of fatigue.

Acupuncture, massage, stretching, yoga, and tai chi have been helpful for many people with CFS.

In addition to lifestyle changes, sessions with a licensed therapist or counselor or involvement in a support group can help someone with CFS. The main goal of therapy is to help people cope with the limitations brought on by the illness, and to change negative or unrealistic thoughts or feelings into positive, realistic ones. It also can help everyone with CFS and their families learn to deal with academic or social problems brought on by the illness, such as missed school/college,University, poor performance, or withdrawal from friends and social situations.

Hope this helps, I have now been diagnosed with ME/CFS as well apparently, it can be in the genes, I am having difficulty accpting the illness, but I am pacing and eating right

Good luck, you can always mail me

Answer 8

I have suffered chronic fatigue, but it was due to depression/anxiety which I was unaware of until I couldn't cope with daily living, this was brought on by stess. I don't know if you're experience is the same, however heres a link that might help.

Answer 9

Follow the 80/20 rule, which means eating clean 80 percent of times and indulging a little 20 percent of that time period.

Answer 10

Take time once a 7 days to plan out and go shopping for meals and snacks so you are prepared whenever hunger strikes.