Those of you who are getting better, in recovery or feel that you're fully recovered I'd like to ask how you did it? What helped you the most? What do you recommend?
You are very important people to us because you're our teachers!
Also those of you who want to ask them questions please do. We could get some good recovery dialogue going here.
Yes I am getting better by taking antidipressant medicine and self hypnosis. I was very serverely suffered for 10 years from my age of 20 to 30. Then I got a job and married in 1998. Now I have got one daughter 13 years old. I am much better and I can manage with medicine and self hypnosis.
That's so uplifting Joe! I'm interested in self-hypnosis and I've thought about doing a course. Is it easy to do? It's such a fascinating therapy. Are there any good websites that you recommend? (If they let you post them!). If they don't you could perhaps just say the name of the website.
Would you mind telling us how it helps you? I really don't know much about it.
In the last couple of months I've gained back some strength. Things that were difficult before, even just brushing my teeth, I've found easier. I was mostly housebound and even very short walks were tough going (we're talking 50 yards). Now once a week I've been going shopping with my wife and also a bit of walking during the week. It's still very slow going, there hasn't been any miraculous recovery, but we have noticed a difference in my ability.
What I'm currently doing:
CoEnzym Q10
Viridian Hi Five B-Complex
Ashwagandha
Cod Liver Oil
I recently visited a master herbalist (just this last weekend) and she has given me something callled Super Food which is a mixture I take with a small amount of fruit juice in the morning. Also a mixture of herbs which i take twice a day which is to help my gut, headaches and help with energy. This is all new but my head has been better this week and also my gut.
Out of all the brews and potions I've tried, the best two things have been rest, and mindfulness meditaion for relaxation. The problem is that for the resting part, I mean the ability to completely rest day in, day out for a long period of time. For the last 7 months I've been able to wake up every day and dedicate myself to resting and improving. I think this is where we find it hard to reach any sort of recovery. If you have young kids or have to keep working, how can you afford this type of rest.
I'm lucky in that my work and family have been very supportive. I would go as far to say that if my work hadn't of been so supportive, I would have left and we would have found a way financially to manage. Its a massive luxury that a lot of people won't have, but I believe this is the one reason I am improving.
First one hypno therapist he is also psychiatrist taught me 3 days how to do it. Then he recorded the commands in a audio casettee. I followed this instruction for quit sometime. Now I am practicing the self confidence; 17 minutes; published by 'The Honest Guys'. You can also download the same from youtube.
Does anyone here follow a gluten free diet? I have read Thst many sufferers if CFS can be gluten intolerant.
I think this is a great discussion to start and will help those of us who struggle every day with this horrible thing we suffer with and it is essential to try and stay as upbeat and positive as possible throughout it all!
I am just reaching my 4th year now and have never been diagnosed with CFS but I have eventually been referred for my appt at the infectious disease clinic on the 29th Jan so hoping they will be able to help.
My dr refused to get me help with nutritionist or allergy testing - why I dont know so I for one am really keen to see what things have helped others with the constant brain fog and feeling wobbly and drunk all day every day since I have had it.
thanks
I tried for a short time and don't think it was especially beneficial. Now I just eat bread and pasta occasionally.
My diet is zero alchohol and caffiene, low sugar and very low processed food intake.
I hope you can get some help Zippy. I am today going to eliminate all gluten from my diet to see if that helps. I just made some delicious gluten free bread from a packet mix. All you had to do was add water and mix. It is lovely! 😊
I'm going to give it a try Bob. Had a long talk with my brother who has never been diagnosed with CFS but has all the same symptoms as me! Whever he gives up gluten, he feels better. As we are related, we might both be gluten intolerant so I am going to give it a try for a month to see if it makes an difference to the CFS. I've nothing to lose!😳
for the last 4 years I have undertaken 6-12 week detoxes removing everything from my diet and living solely on fresh chicken fish and veg and brown rice with nothing else and although I do feel slightly better I do still have the same symptoms so not sure really what my triggers are. I will be doing another one soon with grit detemination to get on top of this thing. Will see what the clinic says to me when I go to see them.
we must all stay positive and hold onto the fact that we will get better one day! how long have you been ill for Mary?
thanks
Zippy
I'm so pleased that you're showing improvements Bob! I'm very big on herbs; I even took two Herbalism courses Which herbs did the Master Herbalist suggest? I may know of them but I'm always open to trying new ones if I haven't heard of them.
I'm wondering how you manage to meditate, doesn't it make you fall asleep, do you sit in a particular posture or do it lying down? I used to meditate a lot before I got Me but now it's just too difficult to get into that frame of mind. I wish I could do it.
I'm going to look up Viridian High 5 B-Complex. I take it from the doctor along with Thiamine but your variety might be better. I take those other things already.
It's great that you're out walking; I long for that day! Excellent that your work is so supportive. Thanks for sharing with us.
Ah great, I'll take a look, thanks Joe!
With difficulty on the meditating front but I'm getting better. The Mindfulness practise is more gentle I find and I do it either sitting or laying. I just follow some practises on Youtube.
I'll try to get a list. She wasn't very specific. Just tailored a mixture specifically for my needs.
So what is your situation? Are you housebound at the moment?
I am a lot better now and the key was to submit to the disease. Before, I always "worked" on getting better, then I found a physician who understood the problem (without knowing much or anything about CFS!) andover the time taught me to give in. I am back to working 25 hours a week plus managing a family of six. Of course there are a lot of things (washing the windows...) that are almost never done, but it does this really matter? During relapses it is sometimes hard and I need medication to get some sleep at least, but I am very grateful to get better.
How did you do that regreba? Do you mean you accepted the disease and learnt to live around it?
Yes I'm housebound and virtually bed bound, I have been for nearly 10 years. But I'm somewhat better than I used to be and very optimistic for my recovery.
I've been giving the gluten free diet a go for several weeks. I don't know if it's related because I'm also doing other healthy things but I haven't had any bloating for a while, or diarrhea. I feel pretty good so I'm giong to keep it up and see what happens.
The good thing is that supermarkets offer quite a few gluten free products. I want to get back into making my own flat or soda bread (haven't for some time), and I have gluten free flour. I've been getting recipes from the BBC Good Food Guide and adjusting them to my needs.
I'm glad you like the discussion; I think we could all learn a lot here. I agree on staying upbeat; we mustn't let it drag us down too much. There are things that can help with that like light therapy boxes, they're excellent!
I asked my doctor for allergy testing but he said they no longer offer it on the NHS, which I think is a bit rough! I've taken antihistamines for years and it's costing the NHS a lot of money added up, so wouldn't it be better for me to get allergy testing and get cured and off the antihistamines, no more cost for them.
Several years ago I was trying to discover what foods I'm allergic to so I was doing the pulse test, count pulse beats for 20 seconds before and after a food. I found that I'm allergic to rice, and various other healthy foods.
I can also tell when my heart rate goes faster and/or I get palpitations, and a generally horrible feeling. I don't get it anywhere near as much these days, I'm recovering slowly I think!