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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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clueless......

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

  1. jules78

    jules78

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    Hiya I have just been referred to see a specialist at my local cfs clinic. But I could really do with some advice on three issues. Would be really appreciative. And will try to keep it brief!
    Firstly I last saw my doctor on Friday, where I told him that my muscular jerks had become more frequent and a lot stronger.

    He told me to come off the sertraline anti depressant ( which I've been taking since March 2013 ) and to start taking a different tablet, which is also an anti depressant but is used to treat muscular jerks too. I was originally on 100mg of sertraline but had had this increased up to 150mg and then 200mg during the doctors investigation into my symptoms in order to rule out depression.

    Any way ...... so he told me to come off of that co.allegedly an take this other one which is 30mg. I did that, but it's been horrendous these past couple of days. My moods have been all over the place. I feel so irritable and ratty, and I feel low and emotional. So yesterday I defied what the doctor said and took one of my original anti depressants and did not bother taking one of the new ones last night.

    Was I wrong to do this?? Because I do not want to feel this way anymore. I had had no problems on the sertraline. I thought it was dangerous to just stop not depressant too, I thought you had to be weaned off of them? And if he's told me to start taking the other type as they will help with the muscular jerks, what is going to help treat my depression?

    Would it not have made more sense to lower the dosage on the sertraline, and find something to work alongside that? I feel very angry at the doctor as I right this because I've gone from feeling emotionally balanced to absolutely rotten, which on top of this illness I did not need!!

    He also told me I should not use my crutches. Which I brought. Because he said they will cause my legs to weaken further. I do understand this. But I am pretty much constantly bed bound, and the only time I get out of the house is to my doctors appointments. I got a taxi there but could not afford one back.

    When walking my legs are like jelly, and my right foot just tends to drag. I also find I walk with both legs bent. I use the crutches to help support me, as I really do struggle to walk. I only use them when I need to walk long distance outside. So should I do like the doctor said and I've them up. I do feel a lot more secure with them?

    And finally I have had anxiety attacks in the past. But last night I was having trouble with my breathing which felt different to what I had experienced with anxiety attacks. It's not the first time I've had this trouble, but its the first time it's felt this bad. It's very hard to describe but will do my best. It did not feel like an anxiety attack where I'm struggling to reach the top of that breath if that makes sense? My or shallow and laboured.

    It felt like I was having to work much harder to breathe, and my heart was pounding. Also when I breathe out I have this slight whistle sound and I sound a bit wheeze, but I have no cough or anything. When I breathe out it does not sound clear. Is this a symptom of Me/Cfs? Is there anything I can do to help it. I'm back to breathing again normally now, but still hear the wheeziness upon breathing out.

    Many thanks for your help and advice on any of the above. Its ever so appreciated. :) xx
    Last edited by a moderator: Mar 12, 2014
  2. jules78

    jules78

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    Sorry had meant to type he told me to come off it completely and not co allegedly like I typed,and that I thought it was dangerous to just stop anti depressants...... silly auto correct!!
  3. jules78

    jules78

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    Also I know I said I haven't a cough or anything, but I am finding that I am unable to clear my throat. I keep coughing trying to but it's not happening, and my voice is croaky a bit?
    alwayshopeful likes this.
  4. Esther12

    Esther12 Senior Member

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    Ummm... sounds really complicated, so I'm not that surprised you feel clueless.

    I'm not sure what's recommended for moving from one AD to another. People coming off ADs are meant to do so gradually, but I don't know about moving to another. Could you ring the consultant to see what they think?
  5. jules78

    jules78

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    Thanks Esther12 I hadn't thought of that :) x
  6. jules78

    jules78

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    Also after writing this I tried to go back to sleep but it took a long time, because every time I was just dropping off I would take a sudden gasp, like I had been holding my breath for a while. This went on for ages until I finally fell asleep. Does anyone else have this happen to them?
  7. justy

    justy Senior Member

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    Hi Jules, so sorry you are going through all of this. it sounds like your doctor doesn't take the real physical illness of M.E seriously. I have a wheelchair for going out as otherwise I get terrible PEM and end up back in bed for a few days. My GP seemed surprised at this, but I just ignored him. I went over his head and had a referral for a wheelchair directly with the local wheelchair service.

    Sertraline is a SSRI class of anti D and as such should ne weaned from. I don't know if this is the case if switching. is the new anti D also an SSRI or another type? do you know what it is called. Do you actually suffer from depression or was that your doctors diagnosis based on your M.E symptoms? many of us are misdiagnosed with depression and put on anti D's unnecessarily. But if you need them and they are working it seems a shame to mess with that - as you say something alongside.

    I get muscle jerks and notice that it is worse when I am overdoing. luckily for me these days I can control a lot of the worse symptoms by really resting - although as soon as I get up and start doing things again it all comes back.

    Not sure about the breathing. Air hunger can be common inn M.E and I have had it alongside my asthma (feeling like you cant take in enough air or are actually having to consciously breathe).

    Not sure if you will find the local cfs clinic helpful - if you wanted to say which one it was you might get some feedback from others here. Most seem to think it is mainly psychological and offer graded exercise therapy, antidepressants for pain and sleep and CBT for aberrant illness beliefs.

    Have you been properly investigated? with muscle jerks, foot drop and dragging leg you should have MS ruled out at the very least. these could also be symptoms of Lyme disease (but that's a whole other can of worms)

    Nice to meet you anyhow.
    Justy.
    WillowJ likes this.
  8. brenda

    brenda Senior Member

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    @jules78

    Have you looked into b12 deficiency? Sounds like some of your symptoms. Look on the Freddd threads.
    justy likes this.
  9. peggy-sue

    peggy-sue

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    Hi and welcome!:)
    If your doctor is trying to discourage you from using the crutches you need, it seems to me he is taking the view that you are just "deconditioned". This is completely wrong.

    I don't like the sound of you coming off such a high dose of Sertraline suddenly. It should be a gradual weaning, then a good couple of weeks free from it before starting on another.
    I think you need more advice from somebody who knows a bit more than your gp.
    Have you asked a pharmacist? They know far more about drugs than doctors do.
  10. jules78

    jules78

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    Hiya Justy
    Sorry for not replying sooner, have been waiting until I had enough energy too.

    I have just taken a look at the list if SSRI anti depressants and Mirtazapine that the doctor told me to switch too is not on the list. I haven't taken it since Tuesday evening and since then ave gone back to making my original dose of sertraline.

    And am already feeling much better emotionally.
    I was diagnosed with depression back in June 2012, though have problems for years. That's just when I sought serious help.

    I will be going to the Cfs clinic at Peterborough City Hospital. I have not been investigated for anything like Ms or Lynda disease. All my doctor was focused on was trying to find out if my depression was the cause of my symptoms.

    He had me see a therapist who agreed with me that I was not suffering from depression or anxiety, as I had tried telling my doctor many times.

    As my anti depressants had got it under control a long time before I became ill, and I know in myself when I'm feeling depressed. But he seemed adamant to pin it on that.

    Is there anything I can do for the air hunger? I'm sat here really struggling today, was so tired earlier and just wanted to sleep, but couldn't because I'm having so much trouble trying to get enough air.

    The only thing I've found that eases it a bit so far is when I stand. But I'm too tired and weak in legs to do that for long. I'm getting so frustrated I feel like going to the walk in centre, but not sure they could help at all could they?

    Can I ask what PEM stands for? Sorry am having to learn all the lingo lol.

    And its very nice to meet you too Justy :) x
    justy likes this.
  11. jules78

    jules78

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    Brenda the doctor did a whole range of blood tests twice on me, would I have been tested for that do you think? As they all came back normal except for the marker test which was a bit higher x
  12. jules78

    jules78

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    Peggy-sue sorry to sound stupid but what does deconditioned mean?
    And thank you for the advice about talking to the pharmacist, I had not thought of that! As they are very informative and helpful here, so I shall definitely do that :) x
  13. jules78

    jules78

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    Justy I forgot to ask you. Who would I need to talk to, to see if I qualify for a chair. Because I'm house bound right now because I struggle to walk, as it really takes it out of me and my legs feel so jelly like and wobbly and I can go off balance. I just feel if I could use a chair. I would get some life back. I could go out for a while with my children again. I feel awful that I can't do things with them anymore, so they have been incredibly good and understanding x
  14. brenda

    brenda Senior Member

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    Jules, normal blood tests are very unreliable in showing b12 status, and besides, the values for normal are very much disputed. Even if levels are considered normal it does not mean that b12 is getting into the cells as b12 metabolism is very complicated and easily disrupted. It is more meaningful to go by symptoms. Many of us have the same genetic defects which interrupt b12 metabolism.
    PennyIA likes this.
  15. peggy-sue

    peggy-sue

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    Deconditioning is the official word for getting unfit because of lack of exercise.

    The theory put about by the psychiatrists is that we get a 'flu (or something like that), take to our beds for too long and get unfit.

    Then we're just too lazy to try to get fit again. :cautious:

    We're "frightened" of the little bit of discomfort it takes to get fit again.:rolleyes:

    Then we start liking all the fuss and attention we get from doctors, :lol:
    we love having our families running around after us, :lol::lol:
    and we love having the life of luxury afforded to us by the reciept of benefits.:lol::lol::lol:
    Cheshire likes this.
  16. jules78

    jules78

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    Ahh ok Brenda, thank you. This is all so new to me. Is it the doctor I should ask for tests to be done to establish if my b12 is low? Though I have a feeling it may be easier getting blood out of a stone! :confused:
  17. jules78

    jules78

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    Thanks Peggy-sue I understand now. And that's just plain silly, as I'd love to be able to exercise so I can lose some weight and see my toes again! Lol

    And I only have to load the dishwasher, Hoover the lounge on a "good day" then I'm knocked out completely in bed for the next couple of days!

    If I'd have known the doctor was thinking along those lines, my crutches May have ended up somewhere they shouldn't! Lol :lol:
    WillowJ likes this.
  18. brenda

    brenda Senior Member

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    Doctors are getting this very wrong. Read Freddd on this.
  19. peggy-sue

    peggy-sue

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    Glad to see your sense of humour hasn't been knocked out of you. You need it with this DD (Damned Disease).

    Yes, the theory behind it all is just garbage, isn't it? Until it is spelled out simply, you just wouldn't credit that some so-called educated folk would come up with it.

    Loading and unloading the dishwasher is a big job. It involves a lot of bending down and raising yourself up again, carrying heavy stuff.

    Up-down, up-down stuff is not good for us - it is a lot of work against gravity.
    justy and jules78 like this.
  20. jules78

    jules78

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    I looked up b12 deficiency and it does produce a lot of my symptoms yes, not all of them though as there's so many different ones I have

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