Viewing 22 posts - 1 through 22 (of 22 total)
  • CFS/ME advice please
  • dorsetknob
    Free Member

    Anyone had a good outcome or know anything about it?
    Daughter now 18 has had it for two years now and it’s taking her life away she’s exhausted most the time had to give up A levels and now doing a two day week foundation course which is a struggle for her. The first bout started with a infection of the tonsils and spent a couple of months in bed mostly then it almost went she was back to about 80% of her old self but it came back not as severe as the first time but still enough to stop her doing normal things a 18 year old should be doing. She has been seeing a homeopath for three months but no progress there. It’s awful seeing a youngster that wants to go to uni and fulfill her life but can’t. It’s slowly destroying her mind which is understandable and is on anti d’s. Done lots of googling but would like some first hand knowledge if anyone out there knows anything about it.

    scotroutes
    Full Member

    A very good friend has suffered for 25 years or so. Lots of different treatments, some “radical”/alternative. Nothing works for long and she is up and down as a result.

    Another friends sister suffered for around 5 years before she got pregnant. The symptoms disappeared and haven’t returned 20 years later.

    I’m not necessarily suggesting the latter as a cure….

    rickmeister
    Full Member

    Andy and Aneela McKenna have a really good Facebook group with a lot of info on how to manage ME…. and it keeps him riding, if not guiding so much….

    https://www.facebook.com/groups/stokedonms/

    HTH

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    bigjim
    Full Member

    I have a good friend who has ME, I will try to find her blog. In a nutshell I think the UK health system deals with it very badly and she has had to go private on various things.

    Interesting about the tonsils. I had very bad tonsillitis at 19 and they’ve never been the same in the 20 years since, frequently getting infected which makes you very run down. I got referred for removal a couple of years ago but the risks etc at my age are significant and we decided not to remove. Are her tonsils still often infected, or pitted with tonsilloliths?

    bigjim
    Full Member

    Rickmeister that’s ms not me, but there are some symptom parallels as my friend with me follows Andy’s blog too.

    woody71
    Free Member

    Hi there

    I had it for 3 years and been fully recovered since January 2016. Happy to have a chat about my experience. Would that be useful?

    Woody71

    dorsetknob
    Free Member

    Thanks Woody, I have forwarded her email.
    Thanks

    longdog
    Free Member

    Hi, I’ve suffered with CFS/me and ended up out work for around 4 years due to it. I was practically house bound for a year. I’m now been back in full time work for 6 years and managed to get back to a good bit of cycling and and a few bike packing trips though they take a lot of recovering from.

    I got my GP to refer me to a specialist NHS centre at Leeds which was a great help in both identifying the condition and strategies to move forward.

    I tried all sorts of weird and wonderful supplements and diets and spent a fortune on them. I did a Lightening Therapy course and that did make a big difference for me, had to borrow from my Mam to pay for that.

    Looking back stress was a big factor for me. Key elements to my recovery were sleep, relaxation, and pacing along with identifying and stopping any activities that made me worse. I built up to being active again very slowly, using a body by science once a week weights routine. the gp tried me on an exercise by prescription thing and I just went back to square one as I just over did it straight away.

    For all I can now do a lot I still pretty much sit when I can or lie when I can and rest as much as possible. No late nights, no alcohol. Low carb diet helps me too.

    My recovery from exercise is very poor but I can manage a 4-5 day bike trip before it all comes crumbling down with pacing. It Can easily take me a fortnight to feel OK again. Illnesses generally hit my for 6 and take longer to get over.

    I feel that the main reason for my recovery was my drive to get better and look for solutions. It was definitely often a one step forwards two back situation. If I’d not be so proactive and had such a supportive wife I wouldn’t have improved like I have.

    Feel free to get in touch with any questions.

    Edit: to add I had a few times previous to going totally down that were put down to post viral fatigue and I also had lots of tonsil, sinus etc issues as a kid

    longdog
    Free Member

    Just to add I had lots of childhood tonsil, addenoid, sinus issues and was diagnosed a few times as post viral in the years before I really went down with it.

    bigjim
    Full Member

    That’s very interesting, I had my adenoids out when I was young but I wish they’d done my tonsils too. My tonsils have had a disproportionate influence on my health and life.

    JoeG
    Free Member

    Has she been tested for Lyme disease?

    manton69
    Full Member

    My wife is a sufferer and I have done a lot of research on the science of CFS/ME. From what I can gather, after reading a lot of research papers (peer reviewed, etc, not just single source web sites) the conclusion is that there can be many reasons behind the symptoms that are grouped under CF/ME. This why a lot of people give what seems to be conflicting advice and many “cures” are often a result of trial and error (possibly a bit of luck if you hit on the right reason and control).

    One of the things that underly the whole thing and can cause relapses/failing to see results is stress/anxiety/depression (as others have said). We have had to spend a lot of time changing all of our behaviours to just realise that you can’t do it all. One of the best tools was to use the spoons analogy: on any one day you only have, for the sake of argument, 5 spoons of energy. You can choose to use them at any point in the day, but when they are gone you cannot get them back until the next day. That way you know that you have to rest and give yourself time to do things. It also gives you permission to go easier on yourself and reduce the amount of stress that you are putting yourself under. You also have to learn what rest actually means. To get some recovery it is either sleep or low/no sensory input; having a sit down and watching TV is not rest as you are still processing a lot of information and therefore using energy.

    The flip side of the slowing down is that you can get used to it when in reality you have actually recovered and could get back your energy levels. In that case some people have to almost kickstart themselves (look up the “Lightning programme” or similar).

    Lots of other information/links if you want, but drop me a line if you want to know more.

    manton69
    Full Member

    Missed Joe G’s message (too long typing) and yes that is something that needs to be ruled out as CF/ME is a common long term symptom set of Lymes. If you know that you are in an at risk area it will be well worth pushing to get a test and the tests are getting better all the time.

    Yak
    Full Member

    I have. At my worst a 200m walk would see me done for the day. So nowhere near as severe as some folk as I was never bed bound. My gp took an interest and suggested graded excerise, taking into account any mental stress of the day as being a load factor too. This worked for me, and excepting a few setbacks I regained normal health in 18months and another 6 or so to get back to reasonable on the bike. I still get the odd symptom and have to sometimes back off things and build up again.
    But I know this may not work for everyone.

    dorsetknob
    Free Member

    Thanks for the replies, will be getting in touch for some more information. One thing I can’t understand is how she got better after the first bout she done nothing different it just lifted in about a month another thing is bloods always come back ok, but there must be a imbalance of something that has yet to be found in the blood or body. Doctors do not seem very interested so might have to try a find a Doc that takes it seriously and has a interest in it. Thanks all.

    woody71
    Free Member

    Hi dorsetknob

    I dropped you a message with my tel number if your daughter wants a chat

    Best
    Woody71

    cinnamon_girl
    Full Member

    Have sent a PM although unsure whether the alert system is working these days. Another worth investigating is mould, for example has your home seen any water damage over the years. A very complex subject from what I’ve gleaned.

    sofaboy73
    Free Member

    A friend of mine who has always been Very fit and healthy and was previously an accomplished fell runner, suffered with CFS forc 4 years. At her worst she couldn’t even get up the stairs. She tried many different things, what finally worked for her was going on a “lightening process” residential course. Within a couple of weeks she’d taken huge steps to getting back to her old self. 5 years later she’s back to 100% and competing in triathlons and has never relapsed. She said it was transformative for her, initially she was very dismissive of it as I believe it focuses on the psychological aspects of the illnes, and she has not tried it out of desperation. Not cheap, but worked for her

    cookci
    Free Member

    Have a look at the Gupta programme

    Basically most people with ME/CFS “symptom scan” a lot and worry when they have a symptom which in turn makes it worse… vicious circle

    ampthill
    Full Member

    My daughter has this. Missed years 9, 10 and 11 from school. Got her gsces from 3 hours home tuition a week. Didn’t do sixth form but did 2 open University units instead (this means she broke the law add was refused family allowance)

    This got her into University. She is just finished her first term of University. She isn’t better but is better as doing what she can with what she has.

    I believe the problem is your own immune system refusing to back down after the illness has gone. There may eventually be a treatment

    https://www.pharmaceutical-journal.com/news-and-analysis/features/fresh-evidence-points-to-a-cause-and-possible-treatments-for-chronic-fatigue-syndrome/20201439.article?firstPass=false

    dorsetknob
    Free Member

    Seems like our girls are about the same age, horrible to watch them suffer without being able to give a honest answer to recovery. Looks like the Americans are ahead of the game compared to the UK very interesting reading. Thanks

    Bunnyhop
    Full Member

    dorsetknob – Firstly can I just say how sad I am to hear your teenage daughter is suffering from this. I have no answers but have suffered along with 2 other members of my family.
    My 25 year old niece first had symptoms at the age of 11 and at her worst was in a wheelchair. She recovered but has to watch her lifestyle. My nephew also suffered but has made a total recovery and is now enjoying a full life.
    Myself – well I had mild cfs compared to them and still have to watch what I do.
    The changes I have made are few but important,eg. not drinking alcohol, eating fairly healthily, taking food little and often, keeping warm in the winter (getting cold uses up lots of calories, which are units of energy), getting plenty of sleep, not overdoing stuff or pushing myself in work, exercise and hobbies. Things are better now because people understand a lot better what cfs is. But there are still plenty of medical professionals that don’t realise this is real.

    There was a scientist on the radio a few weeks ago who said that our immune systems go into overdrive and then don’t know how to return to normal. She explained that in Britain there is more money going into research and cfs is being taken more seriously.
    My own immune system struggles with simple illnesses such as colds. I end up shaking them off for weeks and not days like most people. Anything stronger such as a virus or infection can see me recovering for weeks if not months.
    I’ve become like team sky and wash hands carefully, taking care of hygiene.

    In my own case (when I first got cfs) there were 3 very stressful events which happened in a short space of time before getting a virus and not seeming to recover.

    The ‘bank of energy’ analogy mentioned above with spoons is very good advice. It helps managing energy through a day or week. Keeping pressure and stress at bay is a must.

    My symptoms are still round, eg brain fog and sometimes not being able to speak properly, especially at the end of the day.

    Hopefully your daughter will get her life back in time and this will all be a bad dream. At 18 your feel quite grown up and life is passing you by. There is plenty of time to catch up (which is what my niece has done). Just do what works for you the moment. But could I just say, that giving herself a goal and something to strive for the future really helped me. I achieved my goal but after a realistic amount of time. When I was really down I just kept thinking I will do this one day.
    Keep this thread going as there are plenty of us that can give you advice.

    bunnyhop x

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