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Questions for those in recovery or getting better

Posted , 14 users are following.

GeorgiaS
GeorgiaS

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. razz

3 likes, 67 replies

67 Replies

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  • Zippyevo1
    Zippyevo1 GeorgiaS

    Posted

    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

    • mary_24931
      mary_24931 Zippyevo1

      Posted

      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! 😊
    • Zippyevo1
      Zippyevo1 mary_24931

      Posted

      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

    • GeorgiaS
      GeorgiaS Zippyevo1

      Posted

      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.

    • GeorgiaS
      GeorgiaS Zippyevo1

      Posted

      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! razz

    • GeorgiaS
      GeorgiaS Zippyevo1

      Posted

      You could give the discussion a vote at the top if you think it's useful. rolleyes
  • regreba
    regreba GeorgiaS

    Posted

    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.
    • bob1970
      bob1970 regreba

      Posted

      How did you do that regreba? Do you mean you accepted the disease and learnt to live around it?
    • GeorgiaS
      GeorgiaS regreba

      Posted

      I'm always fighting it and working on getting better, but I think I'm more relaxed about it these days. Is that sort of what you mean regreba?
    • regreba
      regreba bob1970

      Posted

      I think it is mor living with the disease not around it. I get symptoms every day and I have to adjust my timetable (that's why our windows wait and wait...). I make a point of  to not plan things or have projects. When I have to stop doing something because of symptoms I tell myself that things used to be much worse. I had a relapse some weeks ago that was quite bad. For the first time and with the help of my physician (and six nights of drug-induced sleep) I got through it without major depression. I still have more symptoms than before but I am relaxed and grateful, that helps more than any medication. I even think the disease has brought some good to my life: working parttime I am now with my children every  (after a nap), we value it!

      I wish you all the best!

    • regreba
      regreba GeorgiaS

      Posted

      Yes, sort of...please read my reply to Bob 1970. I hope you will find your way with the disease.
    • GeorgiaS
      GeorgiaS regreba

      Posted

      What an upbeat and positive attitude, and being relaxed and grateful definitely helps, rather than being grumpy and upset about it.

      It's great that you see it as bringing good into your life, the illness is slowing me down and that's a good thing because I've always gone too fast. I'm glad you got through your relapse without major depression. Good to hear! biggrin

      I can't have physical projects, I just have to do a bit when I can but I have writing projects like poetry and studying, I need some goals.

  • lefteris54687
    lefteris54687 GeorgiaS

    Posted

    Hi all, in my case, I started to have significant improvement in my energy, 4 months ago, (I have cfs for 20 years) when I started to treat stomach problems (I was diagnosed with h. pylori and a small ulcer). My stomach symptomps were not intense and thus not very obvious. Fatigue (at least in my case but as my doctor says he has treated many cases like me in the past) might be due to the fact that digestive system cannot produce enough energy from the food it takes. Another relative symptom I have, is that when I start to get hungry (which means that the gastric acid starts to flow in the stomach), If I don't eat within a quarter or so, I start to feel fatigue and lack of concentration. My doctor tries to lessen the flow of gastric acid in the stomach. There are also natural remedies that may be helpful. I believe that if digestive system becomes healthy, cfs symptoms may disappear (at least in my case but this may apply to many of us). Thus, If you don't find another root cause for cfs, please, try to achieve healthy digestive system. I wish to you all, complete and fast recovery. Please don't lose your optimism, because some of us do recover and as time passes the knowledge we have of how to deal with it, increases.
    • GeorgiaS
      GeorgiaS lefteris54687

      Posted

      I agree with you about the importance of the digestive problems. I've had ME for around 10 years so only half as long as you.

      I started getting digestive problems, such as a duodenal ulcer that needed surgery, gastroenteritis, pancreatitis. I had diarrhea constantly for a long time and a consultant said that I can't digest fats adequately. Things are getting better slowly though, I just need to work harder on it.

      At the moment I'm taking Aloe vera internally, Burdock for my liver, Grapefruit seed and Myrrh for cleansing. Creon capsules from the doc for digestion, Enzyme Q10, probiotics, oil capsules.

      Which natural remedies are you referring to? I'd appreciate a list and reasons why they help if that's ok?

    • GeorgiaS
      GeorgiaS

      Posted

      I meant to say that I had the digestion problems before the ME! So that could be a big clue!
    • bob1970
      bob1970 GeorgiaS

      Posted

      I too had digestive problems some time before the CFS came on. Its one of the things my herbalist is working on.
    • GeorgiaS
      GeorgiaS bob1970

      Posted

      Yes if we consider that most of the immune system is located in our digestive system it's no wonder that our immune systems are compromised when we have digestive problems.
    • lefteris54687
      lefteris54687 GeorgiaS

      Posted

      Hi Georgia,

          thanks for your follow-up and for being supportive to the members of the forum. I have to say, I do not have much experience with natural remedies for duodenal ulcer (I am under medication for 5 months and I use natural remedies for only two weeks, it is too early to say but I am optimistic that natural remedies will help after internet search):

      I currently use:

      - mastic

          (for its antibacterial properties to kill h. pylori and antiinflammatory properties to help ulcer to heal)

      - licorice tea

          (for protecting the mucus lining of the stomach and helping the ulcer to heal - I read that a form of licorice called DLG may be even healthier)

      - cabbage (especially purple) juice

          (for the same reason as licorice)

      - baking soda

          (drinking with water in concentrations you can easily bear may help neutralise gastric acid)

      My cfs symptoms started when I was 22. Now at the age of 42 I have significant improvement (after medication of 5 months only but still not very close to full recovery). I am optimistic. I wish us all soon full recovery.

    • mary_24931
      mary_24931 lefteris54687

      Posted

      Hi there, I get similar symptoms to you. I get very hungry, sometimes in the middle of the night and sometimes after eating, though I think I realise now this is probably acid. I too get fatigued and 'foggy; if I don't eat something. I now take two gluten free oatcakes and a banana to bed with me and eat the if I feel really hungry. Gaviscon also helps. I too believe the digestive system has a lot to do with managing CFS. I have just gone on to a totally gluten free diet to see if that will help. All the best. Mary
    • lefteris54687
      lefteris54687 mary_24931

      Posted

      Hi Mary, I don't know if you have visited a gastroenterologist. Maybe he advises you to get a gastroscopy. After a gastroscopy, I was diagnosed with h. pylori and a small duodenal ulcer. After taking antibiotics to kill h. pylori and antiacids, I got significantly better in 1-2 months only (after having cfs symptoms for 20 years).

      It seems we have similar symptoms. Me too, I take bananas with me when I go to bed at night and I am under medication that includes antiacids. The gluten free diet may be a good idea. Many people seem to have got help by it. Another thing that helped me is to include protein in my frequent meals (especially egg whites give me more energy). My doctor says that eating frequent meals was my body's natural reaction to feeling fatigued (without knowing I used to neutralise somehow gastric acid - by mixing it with food).

      What my doctor says, (he is actually a good pathologist with cfs in his research interests) is that when the gastric acid starts to flow in the stomach, there is something wrong in my digestive system and my organism gets confused, ending up feeling fatigue. He thus tries to lessen the flow of gastric acid in my stomach. For other people, the root cause may be somewhere else in the digestive system as it consists of many parts. Natural remedies may also be helpful, Georgia also mentioned some just before.

      I wish you all the best for the future. I would like to hear that you get improved.

    • mary_24931
      mary_24931 lefteris54687

      Posted

      That's very interesting about the protein. I was once told by a nutritionist that I wasn't eating enough protein. Women need 50g a day apparently. By choice I would eat vegetarian food only as I love animals but unfortunately I can't digest a lot of vegetarian food so I have reluctantly started to eat chicken and salmon. I also eat eggs but find cheese a bit indigestible so don't eat a lot of this. A good diet is so important for everyone but for CFS sufferers particularly to aid recovery. All the best.
    • GeorgiaS
      GeorgiaS lefteris54687

      Posted

      Thanks for the thumbs up!

      I haven't heard of mastic but I'll look it up, thanks.

      Sometimes I can feel my pancreas beginning to hurt so I suck on liquorice juice sticks, and they work during a full blown attack. 

      Cabbage juice sounds good, thinking of getting a new juicer.

      I have baking soda and have read that it gets rid of heartburn, I use Barberry for that but I might try carbonate of soda next time.

      Lemons turn to alkaline ash in the body so I squeeze them into plain yoghurt, stews, soups, use them in marinades etc.

    • GeorgiaS
      GeorgiaS mary_24931

      Posted

      I used to get hypoglycemic (low blood sugars for those who don't know) very often, and I'd wake up in the night craving sugary foods like chocolate. Symptoms were feeling shaky, sweating face, panicky feelings in the gut, light headed. I don't get it now because my diet is pretty good, and I take Chromium, a mineral that levels blood sugars.

      I use Solgar because it's a good brand, a bit more expensive but I've bought cheaper Chromium and I don't think it did anything!

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