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Any CFS patients here?

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  • Any CFS patients here?

    Salams,


    I'm just wondering if there is anyone diagnosed (or assumed and almost diagnosed given the difficulties with getting diagnosed) with chronic fatigue syndrome here?

    The more I research the whole thing, the more I realize the patients are almost like some kind of secret circle. I cannot join any forum without paying for it, I cannot join any CFS online community without making a donation or something like that. What's the deal, seriously? I figure the conventional medicine doesn't have answers when it comes to CFS, but why make barriers so people cannot talk to each other and exchange experiences and opinions....

  • #2
    Re: Any CFS patients here?

    Originally posted by Jade Vine View Post
    Salams,


    I'm just wondering if there is anyone diagnosed (or assumed and almost diagnosed given the difficulties with getting diagnosed) with chronic fatigue syndrome here?

    The more I research the whole thing, the more I realize the patients are almost like some kind of secret circle. I cannot join any forum without paying for it, I cannot join any CFS online community without making a donation or something like that. What's the deal, seriously? I figure the conventional medicine doesn't have answers when it comes to CFS, but why make barriers so people cannot talk to each other and exchange experiences and opinions....
    :salams: sister

    Unfortunately, so long as all the sites are paid for, it won't break the cycle until at least one site is free (competition).


    I'm sorry to hear you have this condition, but would you mind describing your symptoms, sister? If this is too private you don't have to answer or if you are more comfortable to answer privately, please PM me.

    1. What does it feel like? Is it constant fatigue to the point of always sleeping or just body is always aching? Is it a feeling that you wake up tired?
    2. Is it a problem of an underlying condition (like God forbid, heart problems)?
    3. What are the treatments for it? Or what helps you cope with it?

    Again, if these are too private I apologize but PubMed cannot describe the condition as accurately as a person who experiences it. :jkk:

    Comment


    • #3
      Re: Any CFS patients here?

      walaykum salam,

      Yes I was given an NHS diagnosis of ME/CFS in 2005. With hindsight, I'm convinced that this was a misdiagnosis and my symptoms were in fact being caused by chronic Lyme Disease, which I had to seek a diagnosis for privately in 2008 because the NHS are completely in denial about it as most of their rubbish tests come back as false negatives.I've NEVER had to pay to use a CFS site- maybe because they're UK based. Are you in the US? I used to be a regular participant in the Foggy Friends site a few years ago. Although they ask for donations for their running costs, but that's entirely voluntary and I've never heard of anyone being turned away due to non payment. They were quite helpful when I asked them for advice on purchasing a mobility scooter, obtaining benefits and managing my symptoms. They're almost all white non Muslims so don't expect any Islamic ethos or anything along those lines.

      My advice is: slow down the pace of your life right now, no matter what responsibilities you have, pushing your limits will only make it worse. Do your own research on useful gadgets and supplements that can help you- the NHS are pretty useless. DO NOT ATTEMPT GRADED EXERCISE THERAPY EVER!!!!!!! It is known to make patients worse- treat it like the plague because it is the plague. Learn pacing; I can advise on how to go about that if you want.

      http://www.foggyfriends.org/forum/sh...t=27268&page=2
      Last edited by neelu; 20-01-17, 05:42 PM.
      The Lyme Disease pandemic: http://www.youtube.com/watch?v=z5u73ME4sVU

      Comment


      • #4
        Re: Any CFS patients here?

        I'm just sick and tired of it.

        Well, chronic fatigue that doesn't end, no matter how long I sleep and no matter how much I "slow down". I am an outdoor person and I can't stand being at home, but it got more difficult. Every hiking trip is tiresome, biking as well, even everyday fitness routine which was ridiculous for me, now it's a problem. And the pain in my joints, muscles. The situation is the same whether I walk around a bit, or I just got up - the pain and stiffness is there. I love people and I love to hang out with my friends, but this somehow affected my personality and I feel so tired of this fatigue that I don't feel the same joy when meeting my friends. It's just not the same any more. During the day I am so sleepy, that I figured it's better that I avoid driving a car. It was worse when I was working around the clock, I had some "wholes" in memory and sometimes I forget a minor thing which than snowballs in a big problem at work, but I didn't realize what was happening to me (and neither was my boss) who was mean enough to let go.

        Comment


        • #5
          Re: Any CFS patients here?

          Exercise is known to make the condition worse. At best try physio/yoga/warm up type stuff to keep yourself flexible but anything that gets the heart pumping is dangerous and will either trigger a relapse or at worse can kill you. Mainstream Drs are mostly useless at dealing with it and at best they send you to a clinic for CBT to talk to a shrink about pacing and learning to live within your limitations. Also occupational therapists there can assist with things like putting in hand rails or bath seats for severe sufferers. Some people find that sort of thing helpful, some (like me) find that wholly inadequate.

          One thing I can tell you from personal experience is that there is no quick fix. There are lifestyle and dietary changes that can prevent flare ups and improve symptoms over time, but no actual cure. I realise what works for one person wont necessarily work for another, but in my experience (and I'm loathe to admit it because I LOVE my food) giving up gluten and drastically cutting down my dairy and sugar intake (and cutting out other foods that worsen symptoms) made a significant difference. Home made organic bone broths are good for healing the gut and alleviating joint pains. Raw garlic has the most amazing healing properties, but these also trigger a "die off" or "herxheimer" effect, which is a kind of side effect of taking it medicinally which temporarily worsens symptoms but is good for your long term health. I used to add the garlic to raita or hummus to make it palatable- don't try this with cooked garlic. In fact I've heard that black garlic is even better but I've never tried it.

          I haven't personally looked into this myself (because I have lyme disease so am pursuing that route instead), but it would be worthwhile to read up on Dr Myhill and her protocol for treating M.E and see where that leads... or like me you could pursue seeking another diagnosis which lands you into a whole other maze of complex alternative treatments that the NHS refuse to give you.

          Learn proper breathing and breathing exercises. I know it sounds silly and everyone presumes that they can breathe properly, but in the early stages when I did 20 minute daily breathing exercises, gave up wheat, took raw garlic regularly, paced and avoided trigger foods, it made a big difference. I believe the breathing exercises relieved a lot of muscle pains. Now I can't be bothered to take garlic all the time but take a daily allicinmax supplement (other garlic supplements would not contain the same medicinal effects that you're looking for). I know people whose symptoms improved in leaps and bounds from taking allicinmax or some form of garlic- but don't take it if you have some sort of sulfur allergy. They sound like drastic changes (they are), but they help re-establish a feeling of control over your body albeit in a small way and that's something that can increase over time if you don't push your limits through over exertion.
          The Lyme Disease pandemic: http://www.youtube.com/watch?v=z5u73ME4sVU

          Comment


          • #6
            Re: Any CFS patients here?

            Originally posted by Jade Vine View Post
            I'm just sick and tired of it.

            Well, chronic fatigue that doesn't end, no matter how long I sleep and no matter how much I "slow down". I am an outdoor person and I can't stand being at home, but it got more difficult. Every hiking trip is tiresome, biking as well, even everyday fitness routine which was ridiculous for me, now it's a problem. And the pain in my joints, muscles. The situation is the same whether I walk around a bit, or I just got up - the pain and stiffness is there. I love people and I love to hang out with my friends, but this somehow affected my personality and I feel so tired of this fatigue that I don't feel the same joy when meeting my friends. It's just not the same any more. During the day I am so sleepy, that I figured it's better that I avoid driving a car. It was worse when I was working around the clock, I had some "wholes" in memory and sometimes I forget a minor thing which than snowballs in a big problem at work, but I didn't realize what was happening to me (and neither was my boss) who was mean enough to let go.
            Are you sure there isn't another underlying reason for all this tiredness ?

            Did you get yourself fully checked by a reliable doctor ? Or was it self-diagnosis ?

            I think you should consult a good physician , get all blood tests etc done to figure out what's actually wrong...it just might be something other than CFS.

            Comment


            • #7
              Re: Any CFS patients here?

              Originally posted by ~TwinklingStar~ View Post
              Are you sure there isn't another underlying reason for all this tiredness ?

              Did you get yourself fully checked by a reliable doctor ? Or was it self-diagnosis ?

              I think you should consult a good physician , get all blood tests etc done to figure out what's actually wrong...it just might be something other than CFS.
              I checked everything there is to check. CFS is difficult to diagnose, and usually is diagnosed in absence of any other viable diagnosis. In my country it is not even considered as a disease so it is very difficult to cope with it. After all the screenings, blood tests, roentgen exams, ultrasounds etc., everything is perfect and yet I am having all these horrible symptoms...

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