A Question About CFS

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I am fairly new to CFS and Fibro, having been diagnosed with both about 1 1/2 years ago.  A comment someone else made,caused me to question one of my assumptions.  I thought that IBS was a common part of CFS, which most people with CFS dealt with. May I ask, do most of you have bowel issues?  Was my assumption wrong?

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  • Posted

    I was diagnosed with CFS 11 years ago. I'm glad to say that IBS has never been a factor for me
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  • Posted

    Hi Dawn,

    My understanding from recent diagnosis in March of CFS, is that current thinking is of previously diagnosed conditions such as IBS, Fibromyalgia, Chronic Pain plus another two, are now thought to be part of a bigger condition currently known as CFS!

    Basically, it seems there are many people who have had these illnesses and are now also being diagnosed with CFS.

    I have never been diagnosed with IBS personally but have had many bowel symptoms over the years, never severe enough to seek medical advice about. :-)

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    • Posted

      I was told that ME is an umbrella term for lots of symptoms, including IBS and Candida, and I have both.

      As most of the immune system is located in the digestive system and ME is an auto immune disorder it makes sense.

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    • Posted

      M.E./CFS sufferers often do have these conditions but they must also have had severely debilitating post exertion fatigue for 6 months or more - the sort of fatigue which makes climbing a flight of stairs impossible or even brushing hair.  I am not belittling IBS or candida as I have IBS and had candida and know how awful they are.  It is just that doctors are too quick to give a diagnosis of ME/CFS when they don't immediately know what is wrong.  IBS can be symptomatic of other and very serious conditions and candida does indeed make you feel extremely lethargic but is treatable.  It is almost as if the docs want to say oh its ME/CFS just live with it when sometimes people can be treated and get back their health and normal life.
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    • Posted

      Wow that hasn't been my experience at all!

      I had to change doctors several times because they were refusing to give me an ME diagnosis. One put it down to depression and tried to get me on Prozac, and others just didn't even consider ME even when I suggested it. A nurse and a doctor both said 'It can't be ME because your test results don't show it'. There aren't any tests for ME!

      In the end I pushed and pushed and was sent to an ME specialist.

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    • Posted

      Georgia, I had an experience very similar to yours. A doctor said it couldn't me CFS when I suggested it. He also told me I just needed a vacation. From what I've read on this forum and elsewhere, this is a much more typical experience than a doctor jumping to a diagnosis of ME/CFS.
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    • Posted

      Yes Jackie, I've heard this story over and over again!

      I tried to get a letter of support for DLA from one doctor and he wrote a letter saying 'In my opinion sick people should work!' I still have it and I think I should frame it! 

      I'd like to see him have ME and go to work. cheesygrin

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    • Posted

      I'm so glad you managed to see a specialist.  Unfortunately there aren't any in my area - so few at all!  You are right that they do try the depression or all in your head routine with many women - I had that when I was taken into hospital unable to even lift my arm.  The psychiatrist was called and she said yes, I was depressed but basically anyone would be trying to deal with my symptoms.  All the docs do now is painkillers and antidepressants, blood pressure meds and other things to deal with the symptoms which are added to regularly.  Have you had any progress with the M.E. specialist?

       

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    • Posted

      Yes, my doc gives me painkillers for it. He prescribed Amitriptelene but I didn't really want to take it; I tried a few and they made me more fatigued.

      The ME specialist was a good things because I got the diagnosis but that was all. He sent occupational therapists to my home for a while and they taught me about pacing (which I still can't do), and gentle yoga, which I don't have the energy for.

      So it wasn't really much use towards recovery, and when they'd taught me what they knew they stopped coming.

      I think with this disease it's in our hands and I've made improvements with herbs and diet and things like a light therapy box etc. I believe I'll get well one day if I keep trying. We all have to believe we can and not lose hope. razz

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    • Posted

      Georgia,

      What herbs have helped you the very most?  Sometimes it is so hard to have hope and keep believing.

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    • Posted

      Yes it is hard and I used to lose hope sometimes but I make myself be optimistic and it really helps me to keep going. We can decide to be hopeful with practice.

      Lots of herbs help me for different symptoms. Kelp for the thyroid, Valerian for a good night's sleep, Myrrh to keep Candida and ifections at bay, Ginseng and Kola nut for energy, Slippery Elm Bark for the gut. Dandelion, Burdock and Nettles are very good. You could look these herbs up.

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    • Posted

      I'm wondering, is Ginseng and Kola nut meant to be taken every day, for instance just every morning as a matter of course.  Or do you take it as an on needed basis?.
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    • Posted

      I think they work better taken regularly 3 times a day. I'll message you about somethiing else (homeopathic) as we can't name brands here.
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    • Posted

      I'm very interested in Ginseng.  I assume you are referring to the Asian kind.  I had just bought Siberian Eleuthero(sometimes called American Ginseng, apparently) but based on what I have read today, I don't think it is suppose to be as effective???
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    • Posted

      I missed out some of the most important herbs! (It was late). St John's Wort and Damiana work really well together for lightened moods and energy, Damiana even gives you sexual energy, as does Ginseng.

      Who with ME doesn't want some of that! razz In fact a guy I know told me that he knew he was recovering from ME when he started making love to his wife again. Lol

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    • Posted

      I'm takiing notes on the remedies that you have been mentioning.  I hope others are too.  EspeciallyCherie, who said that she was new to having CFS and wondered what she could do alleviate symptoms that was more natural.
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