going to the doctor on Thursday - help please...

Discussion in 'Fibromyalgia Main Forum' started by leokat, Apr 26, 2003.

  1. leokat

    leokat New Member

    because I've finally decided that my meds are well overdue for a review.

    It would be really helpful if people here could offer tips, suggestions and advice before I go.

    I have, as far as I can tell, had cfs since my late teens (though I didn't know it and wasn't diagnosed). Nine years ago (after a period of four years where my symptoms had been getting better) I crashed and for the first time pain became my major symptom. After the usual battery of doctors visits and fears that 'something more' was wrong with me I was diagnosed with FM about 16 months ago.

    My FMS/cfs appears to have stabilised over the past 18 months. I still experience pain almost continuously but it is at a level I can cope with if I take my painkillers. My fatigue is less of a problem than it used to be and I am sleeping better than I used to, though for only short periods. I don't have to spend many of my days in bed like I used to, though I am still mainly confined to home. I can just about cope ith keeping my home clean and maybe do some cooking but this leaves me with little energy for anything else. I have noticed recently that I am experiencing more neurological probs: More headaches (though they are not serious and by no means a major problem). I also confuse words more often and forget things.

    It feels good to feel generally more in control of my life but I don't want to sit on my laurels, I'd really like to continue making progress and hopefully get more of my life back. Also, I am worried about my brain probs.

    At the moment I am taking two effervescent co-codamol tablets four times per day and have been doing so for about two years. I have liver probs and am aware that these tablets are not helping. However, they are the best pain relievers I have found in that they work quickly and take the edge off of my pain, also they don't knock me out. I have tried various other painkillers in the past: codine, paracetamol, ibuprofen and various other NSAID's - I still sometimes take over the counter ibuprofen if the co-codomol doesn't dull the pain enough.

    My doctor would also like me to take 20mgs of amitriptylene (sp) per day but I have found that even this (relatively) small dose knocks me out for the whole of the next day.

    My doctor seems sympathetic to my condition but is not so 'up' on the latest treatments. Are there questions I ought to be asking him? Things (medications/tests) I ought to be requesting? Are there any recent articles or pieces of information I ought ask if he's seen?

    Does anyone have an effective painkiller to recommend that is safer for long term use and the health of my liver than co-codamol? Also, I am interested in all that's been written about Guai on this site. Does anyone know is it available on perscription in the UK? If not where can I get it?

    What do other people find effective?

    I'm pretty sure I also need to work on my diet and I probably need a planned exercise plan but maybe I'll save that one for another message as this one's quite long enough already.

    Sorry this has gotten so long and thanks to anyone patient enough to stick with me.

    I'd be greatful for any suggestions.

    leo.


  2. gcalex

    gcalex New Member

    I can't vouch for it personally, but much of the "cutting edge" thinking and testing seems to have been done by Dr. Paul Cheney and it is all over the web. You might also check out Dr. Jacob Teitlebaum's website which I think is endfatigue.org or maybe endfatigue.com I forget which.
  3. marta

    marta New Member

    Teitelbaum's site is endfatigue.com

    Leo, it seems that you're making good strides with your health - maybe not as speedy or as complete as you'd like - but unless we travel to consult with one of the experts like Cheney or Teitelbaum we just have to find a doctor we can trust who will treat us with respect as well as drugs. I often think we need to add a healthy dose of relaxation into our daily meds rather than more meds.

    Dr. Teitelbaum does have a program which can be had for a good chunk of change (used to be $200). You complete a health questionaire, then work with your own doctor on the protocol recommended. Dr. T. believes in beginning all supplements and meds at once which concerns me because I react so oddly to meds so I haven't done it.

    Marta


  4. pinkquartz

    pinkquartz New Member

    i was going to say hi to you today and thank you for your reply last week, only i am still in such a quiet sad space i have even lost my passion for this board.
    anyway i came and had a look and saw your name.

    i think you are doing fairly well, but the painkillers i take are prescription only, they are dihydrocodeine, i take them evening and bedtime.
    They are addictive and you do build up a tolerance so they won't get rid of the pain when its really bad , but most of the time they have kept me going.
    before these i was in so much pain i was getting scared of what extremes i might be driven to with the pain. so when i look back i am happier on these.
    it's a tough decision for you to make.

    One of the best things i have done is to go to a proper nutrionist, she oversees my vits. and supps. [ mostly we are restricted by my lack of funds!!!]
    She also advises re diet.
    if i had a lot of money i know we would have achieved more results,as she is good. but i have been ill so long i have no money.
    Can you afford anything like this ? if you can then you can improve i reckon.
    its hard to advise re U.K. doctors, as most get their backs up if you try to advise.
    Are you a member of Action for Me ?

    Have you had your thyroid checked ?
    Adrenal function?
    Apart from the amitripline[sp], what treatment does he go for ?

    i loaned a copy of Teitlebaum"s book to my G.P. who has gone on to buy a copy !!!!
    its one thing to give it a go !!!! they can only say no to reading it. our medical system is so different here i don't know much is possible on NHS, lucky ones go off to private clinics.
    let me know what other kinds of stuff you want to know about.
    best wishes
    pinkquartz

  5. layinglow

    layinglow New Member

    Leo---you are taking codeine and paracetamol in the Co-Codamol Effervescent.


    I Copied and pasted this from a pharmacy online:
    Codamol is a mixture of paracetamol and codeine phosphate used for the relief of mild to moderate pain.

    CO-CODAMOL EFFERVESCENT 100
    CO-CODAMOL EFFERVESCENT 24
    CO-CODAMOL EFFERVESCENT 60


    LL


  6. leokat

    leokat New Member

    I'll go take a look at the stuff that's on the web re: Drs Teitelbaum and Cheney. It looks like that's where I need to start.

    Hey pinkquartz it's good to hear from you again. I'm only sorry that you're still not feeling up to much. With all that's been going on that's only to be expected though. Try to be nice to yourself and take your time. We'll be here when you're ready to come back on a more regular basis. Thank you so much for taking the trouble to reply to my message.

    LOL finance is a bit of a problem to say the least but I guess I have to realise that if I want to move forward I may need to invest a bit more in me. My daughter is due to leave college in July and will hopefully find a job. When she does this I ought to be able to focus a bit more on my own needs. In the meantime I will get Dr Teitelbaum 's book at least.

    Teehee you're right about UK docs not taking kindly to advice but hey I'm feeling brave. ;-}

    Sorry layinglow I'm not sure what you're saying/asking. I take co-codamol effervescent 60 and know that it contains paracetamol and codine. I don't double up on these but was saying I have taken them independently in the past.

    leo