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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
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clueless......

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

  1. peggy-sue

    peggy-sue

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    Don't fret, we seem to be cross-posting, Jules, my head is on sideways and I feel I'm being very curt and not explaining anything at all well.:)

    I use ME. According to WHO listings it is G.93.3. Benign Myalgic Encephalomyelitis. A Neurological and Immunological illness.
    It's the one where PEM is a major problem. That's what I've got. I do not have a diagnosis of anything though.
    My gp and his entire surgery are simply not interested.
    I've been treated with nothing but contempt (and a couple of inappropriate antidepressants) and left to rot.

    I'd be happy to call it WIG (I've even suggested this before) "Whatever I've Got", but I won't use CFS.

    I don't (personally) recognise "CFS" as anything but a derogatory label, that is, as far as the uk is concerned.

    It gets even more confusing with different countries using this label, but meaning different things there.
     
    justy likes this.
  2. peggy-sue

    peggy-sue

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    Ok. Onto claw hands now. (we're getting there:))

    Possibly cramps? PWME (people with ME) do get cramps and muscle twitches and spasms and restless legs, it affects different folk in different ways, obviously.

    I had them very badly in my legs at one point - kicking Michael violently in bed or suddenly leaping to the ceiling in agony.

    I started taking magnesium to help - and it did.
    It's the citrate form, and I do take an molecular equivalent in calcium to protect my bones from the magnesium leaching the calcium out. But I need to be careful about my bones - I did an early "Climate Eric". ;)

    Many of us do get issues with hands and fingers swelling for no apparent reason. It tends to go eventually, but it makes typing difficult. I call them sausage fingers, because they're about as much use as 10 raw sausages.
     
  3. jules78

    jules78

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    Oh thank you @peggy-sue and your doing fine lol it's me being slow :D

    In that case I will stick to my original ME, because it's not just "fatigue" it's so much more than that, and the word fatigue, just somehow sounds like a bit of an understatement to me lol.
    The amount of simple things like even having a conversation, or dressing my six year old is enough to put me in bed .
     
  4. jules78

    jules78

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    Mine do look like sausages @peggy-sue

    I get a lot of jerks, which have definitely become more stronger and frequent.

    My kids find it hilarious, when I'm sat there and suddenly throw my arm up or shake my head lol.

    I get them all over, but it's mainly the top half of my body.

    I've bitten my tongue and given myself fat lips from when I've had a head one.

    I tell my kids I'm just body bopping! I have to laugh about it all, otherwise I think I'd go crazy lol
     
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  5. peggy-sue

    peggy-sue

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    You sound as if you've got it a lot worse than I did - and mine was just my legs.
    Injuring yourself isn't good.:(


    Given the psychiatrists reckon that all that is wrong in "CFS/ME" is;

    We had 'flu or something, which put us in our beds for a while, we got used to doing nothing and we got all unfit.

    But now, we're too frightened of the little bit of exercise it takes to get fit again.

    Besides, we like all the attention from doctors, we like having our families running rings around us, and we just love the life of luxury on benefits. We are just lazy, selfish so-and-sos.

    So, bad patients that we are, we need to be told there is nothing wrong with us. All we need is a bit of positive thinking and some exercise, get on your bike and off you go.

    The day after a bit of extra exercise you do feel a wee bit achey, they honestly believe that is what we are scared of!
     
  6. jules78

    jules78

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    Yes that's most definitely the impression I get @peggy-sue

    I wanted to bang my head against a wall, because it felt like he was so adamant to pin it on depression, because I've had that in the past.

    Any symptom I had, he said yes that does occur with depression. Aarrgghhh :mad:

    I kept telling him I'm not depressed. I've had depression in the past and went through two years of cbt.

    But it's been under control now for two years. I've actually never felt better mentally than I do now.

    One therapist who he referred me to, gave me an over the phone assessment. She had gone over my previous history.

    And said the symptoms I'm having now are nothing like what I had before when I was depressed. And from what I told her she did not feel I was depressed.

    But because my physical symptoms do occur in depression she was not able rule it out 100%

    So upon that the doctor referred me to have a cbt session with a therapist. I explained my symptoms and told them what had been going on.

    And the therapist agreed that it did sound like my doctor was just trying to pin this as being depression.

    He did a couple of assessments with me which are point scored. And basically my score came out zero for depression and anxiety.

    It felt so good to have someone finally say. Yes I don't believe this is depression related at all.
     
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  7. jules78

    jules78

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    My children have seen me depressed and they definitely would have known if I was too.
     
  8. peggy-sue

    peggy-sue

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    If you're depressed you have no motivation. :(

    You seem and sound pretty motivated to me.:balloons::thumbsup::balloons:

    I've had it before too. So I know I'm not depressed too.:thumbsup:
    (well, I did get depressed after being sick and ignored and housebound-ish for 4 years. ME caused it. I got pills for it. hate them.)

    But it's not a helpful history to have:( - and it's not helpful being female either.:(:(
    So, you've already had CBT - and it helped? Great!
    It can be good for some things.
     
  9. jules78

    jules78

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    Oh yes it definitely helped @peggy-sue . So much so that I decided it was time for a brand new start, away from all the memories of where I had been living.

    So I moved myself and my three children to a town where I'd never lived before. And thankfully it paid off. The kids love it here and are all in much better schools now.

    So it does feel a bit cruel at times. That just when I was finally happy and enjoying life. I get this.

    But the way I stay positive is by keep reminding myself that at least I am still here, and able to see my kids grow up :)

    Though I do have days where I get a bit down about it, and I think is this how my life's going to be now forever
     
    justy and peggy-sue like this.
  10. greebo

    greebo

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    I've been looking at this website:

    http://www.medicines.org.uk/guides/sertraline/anxiety

    to check the side effects of sertraline. It looks like most of the symptoms you mention could be caused by the sertraline. Perhaps a very slow wean could prevent your depression from coming back and cure you at the same time.

    If not, at least you know for sure that the antidepressant isn't causing your symptoms.

    Edit: @jules78 I'm tagging you, because I worry that you didn't notice this and I truly believe it could help you.
     
    Last edited: Mar 20, 2014

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