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clueless......

Discussion in 'General Symptoms' started by jules78, Mar 12, 2014.

  1. brenda

    brenda Senior Member

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    There are many of us here who are or who have been very deficient.
  2. jules78

    jules78

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    That's interesting, I will definitely have to bring that up. I've learnt far more on here about this illness, than any doctors told me that's for sure
  3. brenda

    brenda Senior Member

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    Jules you will never get a doctor to admit you may be deficient with 'normal' results from bloods. There is only one doctor from my research that 'gets it' about b12 and he is in the northeast.

    https://www.b12d.org/tags/dr-chandy

    Freddd here has studied the subject for a long time and knows more than most about it. He is the one to read.
  4. peggy-sue

    peggy-sue

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    I just started taking sublingual vitamin B12 from the health food shop. It's not expensive - about £10 for 100 tablets, enough for 3 months.
    No tests from doctors. No interest, treated with nothing but antidepressants and contempt.

    I did check first that it's not something that would end up causing problems in "overdose", and decided just to try it.

    Within 30 minutes of taking my first one, a sort of strange non-painful agony,
    the feeling of my brain being about to explode
    from the effort of taking in information if somebody was talking to me,
    that had been constant for 3 years
    just lifted.
    It was a miracle for me. I've been taking it for 7 years.:thumbsup:

    It isn't for everybody!

    Not long ago, I started forgetting to take it. My tongue went black and hairy, I started getting oral thrush and sores in my mouth that wouldn't heal.

    Not only that, but my brain and body were going slowly further and further downhill.

    As soon as I started taking it again, my mouth cleared up and healed, my brain and body are starting to come back a bit.
  5. peggy-sue

    peggy-sue

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    Tasks such as doing the dishwasher, might be easier done a little bit at a time, rather than all at once.
    Same with hoovering - just do one room, not the whole lot at once.

    Again, it is hard work, hauling and pushing the stupid, awkward and malicious thing around.

    Vacuum cleaners are all malicious creatures, out to get me. I must have done something really vile to one in a "past life";)
    justy and jules78 like this.
  6. PNR2008

    PNR2008 Senior Member

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    @peggy-sue, I have been on a mission from God (for all the bad backs) to find the perfect vacuum cleaner. I've had 3 Hoovers, 2 Kirbys, Rainbow and Dyson. They all suck. The best vacuum cleaner is another person doing it.
  7. Misfit Toy

    Misfit Toy Senior Member

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    My favorite vacuum of all time is an Oreck. It is light and totally SUCKS...but in a good way! It works great and it doesn't hurt my back. Very expensive but I was lucky enough to have been given it as a gift. I can vacuum 4 rooms in a jiff because it is so light. I love it. And, I have free lifetime servicing for it once a year.
    jules78 likes this.
  8. jules78

    jules78

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    I'm off to look up 'The oreck' now lol, sounds great!

    And @peggy-sue the feeling of your brain being about to explode from someone talking for a long time, is a symptom I'd love not to have. It's a tough one to have, because both my girls could talk for Britain! And it's at times just like this big mixed up noise in my head, and it hurts. And I have to tell them I need time out. It can make me snappy too :(:oops:
    I will take a look into the b12 vitamin.
    peggy-sue likes this.
  9. AndyPandy

    AndyPandy Making the most of it

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    I bought a wheelchair and a walking frame privately through a local on line secondhand goods website. Very affordable and they have definitely helped me to get some of my old life back.

    Best wishes
    peggy-sue likes this.
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Difficulty breathing out can be a symptom of asthma.
  11. justy

    justy Senior Member

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    Hi Jules - sorry not to reply sooner, I hadn't realised you had replied to my reply, but I see you have got the hang of the @jules thingy, if you do that when you respond to someone we will always know you have responded and be able to go back to the thread. (Oh I hope that makes sense)

    PEM stands for Post Exertional Malaise, explained here:

    http://me-advocacy.com/PENE_An_explanation.html

    another abbreviation you may come across is PWME or PWCFS which mean people with M.E, and people with CFS - we type it abbreviated as its such a mouthful (or brainful I suppose)

    Now I've gone off on a tangent and forgotten what I was going to say...

    Oh yes, wheelchairs...you could either, ask your GP, approach the wheelchair service direct

    http://fis.peterborough.gov.uk/kb5/peterborough/fsd/organisation.page?id=om4idCab3KQ

    Ask the nurse in your practice if they do referrals (mine did).

    Alternatively you could ask the red cross to lend you one for a little while and see if it is for you. Then you may be able to make a stronger case to your GP, saying you have already been using one. I find mine a lifesaver. I still don't go out much, but it means I CAN have a day out with the family and even go on holiday. With my wheelchair, when im on holiday I can go out nearly every day so long as I make myself use it - even if its just for a short 'walk'.

    We have used it for museums etc as well, and If I get really exhausted I juts ask to be parked and relax as much as possible until its time to visit the tea rooms.

    http://www.redcross.org.uk/Where-we...obility-aids?gclid=CJzZ7orjm70CFTTJtAodfg0Awg

    Take care (TC)
    Justy.

    http://www.dialpeterborough.co.uk/aids-and-equipment/
    peggy-sue likes this.
  12. jules78

    jules78

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    Thank you @AndyPandy that's something to look into if I have no joy elsewhere :)

    And thank you @Little Bluestem I have wondered if that may be the case, as sometimes I get tight chested and it makes me cough.

    But I've been too scared to mention it to doctor, as just feel like he'll take one look at me and blame it on my weight..... which I know probably isn't helping matters :( x

    And thank you @justy for all your advice :)
    That's a real big help!

    But is there a difference between M.E and CFS then? As I read online that there isn't. It's just that Americans tend to say CFS more and us English people M.E.
    Is that not the case then? x:confused:
  13. peggy-sue

    peggy-sue

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    CFS stands for chronic fatigue syndrome. It is a collection of symptoms, not an illness or a diagnosis.

    You can get "CFS" from depression, from chemotherapy, from diabetes, from heart failure - from all sorts of things.

    ME can cause CFS symptoms too.

    What is going on is that ME has been assumed by the psychiatrists to be depression, folk with ME are getting buried in the CFS label which comes under the ageis of mental illness.

    Benefits for mental illness are less than for a physical illness.
    (Blatant discrimmination. I do sometimes wonder if we would be better off campaigning for equal benefits for mental and physical illness - so the psychs wouldn't NEED to label us as nuts any more. :rolleyes:)

    It is all about insurance companies (eg UNUMProvident, in which many of the psychiatrists have personal vested interests) not having to pay out higher benefit rates.


    PEM is a cardinal feature of ME.
    It doesn't have to be included in the various sets of criteria for CFS, although some do include it, now the waters have been so muddied that some folk think CFS is a diagnosis.
    Last edited: Mar 18, 2014
  14. jules78

    jules78

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    Ahh ok thanks @peggy-sue I never knew that.
    I'm sorry to sound a bit stupid, but this is all new to me and the doctor never says much.

    After I'd months of going back and forth , he's finally just referred me to the CFS clinic. So is he thinking it's CFS or do they see ME patients there too?
    peggy-sue likes this.
  15. peggy-sue

    peggy-sue

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    Nobody in the UK will get a diagnosis of ME. It isn't recognised by NICE.

    They have "CFS/ME" instead.

    If you have ME, you will be told it is CFS (or CFS/ME) and sent to a CFS clinic, if there are any.

    It is quite likely others there will have ME.

    You're NOT stupid! You just don't have the information you need yet.:hug:

    And the politics surrounding this are almost too Orwellain to comprehend.:mad:
    justy likes this.
  16. jules78

    jules78

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    Ahh thank you @peggy-sue that clears up a lot of the confusion now :D
  17. jules78

    jules78

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    @peggy-sue . My doctor always used the term CFS , but I was saying to my family he suspects it's ME. As I thought they were both the same thing after reading that article I spoke about. So now I will say CFS when asked.
  18. peggy-sue

    peggy-sue

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    Does it? :eek:
    (*thud* as I hit the floor;) )

    (that was in reply to your previous post)
    I would doubt your doctor knows the difference between real ME and a diagnosis of CFS.


    I don't (and won't) use CFS, but that's just me.
    I don't have CFS. I don't have fatigue.
    My body stopped working properly, it won't do aerobic anything, it won't make enough energy for me to function.
  19. jules78

    jules78

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    @peggy-sue So do you use the term ME? Sorry been sleeping most of today so got my silly head on lol
  20. jules78

    jules78

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    @peggy-sue . It's all rather overwhelming. So many different things happening.

    I've now started waking with my hand in a claw style and my thumbs.

    It feels swollen and sore especially my thumbs area on my Palm. And takes while for hand to go back to normal. :thumbdown:

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