**Tansy/Ralph&others who replied**Update on Rx sensitivity

Discussion in 'Fibromyalgia Main Forum' started by pastel, Sep 23, 2005.

  1. pastel

    pastel New Member

    Over the last 2 weeks I've had to come off the effexor
    completely, rather more rapidly than desirable due to the
    toxic/allergic(?) responses outlined in my earlier post.

    Now it's been 5 days without any effexor and I seem to be
    settling down after a period of rebound or withdrawal
    syndrome (quite a euphamism isn't it).

    Interesting thus far I feel better both physically and
    emotionally without any medication; time will tell of course
    but I feel much more like myself ...after I stopped my
    2 days of "spendy" behaviour and stopped being irritated
    by the neighbour's barking dog.

    Thanks again for the suggestions which I did follow up
    on and cross your pinkies for me.


    p.s. Tansy, I read a recent post of yours in which you
    described profound muscular fatigue without CNS fatigue.
    I have that as well and I'm wondering what you put it down
    to, and how you approach treating the problem. The
    only thing that works for me is to rest my muscles absolutely; cane use, no carrying of anything. Very
    demoralizing. Anyway, do you have any other recuperative
    or preventative suggestions you can share? Thanks.
  2. tansy

    tansy New Member

    caused me more problems than they solved, that’s not unusual in CFIDS. Many of the symptoms ADs treat are a lot better now; my protocol is extensive, and has evolved over time, so it’s difficult to pinpoint one agent though some have had more obvious beneficial effects than others.

    I have made progress and feel stronger generally, but the muscle issues we both have are still present so I have to be careful. Last week my new PT could see the difference in them after enforced rest (had a viral infection), and like other PTs observed how quickly my muscles lose power. Even so my activity threshold is higher these days and I am making some progress with the PT so far instead of just ending up worse.

    Mg and Co q 10 were the first supps to make any noticeable difference. Balanced electrolytes have helped as well. I take Recuperation as used in the Blasi Protocol, they have helped stabilise some HPA axis issues; I suspect this is because a negative feedback loop has been broken. Getting my inflammation down more had a positive effect as has changing my protocol for coagulation. My pathogen load should be lower now and my IS seems less over reactive, well it was until I went down with a virus when it kicked in big time.

    I do have some spine issues that are contributing to some of my muscle symptoms, hence my recent referral for PT.

    Have you read Dr Sarah Myhill’s hypothesis? Personally I am not sure this is wholly relevant to me because I can have more energy generally and still have serious problems with my muscles. My 4 EMGs showed myopathy/myositis, increased jitter and perfusion; also had skewed pyruvate/lactate ratios.

    So not got my own answer for this. Even so I am sitting better, standing more, and even walking short distances in my home; this was not possible for many years. Getting the balance between activity and rest remains important, but I can do more and the recovery time has decreased during my better periods. My specialist in the UK (self funded) thinks infections and toxins are still major players, if he’s right then my improvements will continue and hopefully that will lead to better muscle function.

    Though frustrating it does not get me down as much as the severity of my cognitive issues did. On good days my brain works better and I am still enjoying the difference that has made to my life; so for a while at least, it helps to compensate for minimal progress muscle-wise.

    Some of us are trying y-dan, a gentle form of tai chi. I have had to adapt some of the movements and am going about it slowly, I even had to stop a few temporarily. Some of the movements are not possible yet, but they give me something to aim for. What yoga teachers had insisted would help made things worse; y-dan movements seem to suit my muscle problems and peculiarities better. Doing y-dan has wiped me out some days, so I am learning how to judge my tolerance on a day-to-day basis better.

    Love, Tansy
  3. pastel

    pastel New Member

    Thank you for your thoughtful and kind response. You've got so much to share; you've been through a great deal and so might well have insights, but lots of folks don't go the extra mile that you do and share with those of us who also need the help.

    I feel for you thinking of your difficulties,
    and when I am not well, which can be often, I don't sit, stand, or walk well either. I'm trying to commiserate, not one-up you; I hope that's coming through this

    The hypothesis you mention is unfamiliar but it will be
    looked into as well as y-dan. Trust I can find Sara Myhill's work on the net or this site. However not certain
    what IS means?

    I did yoga twice daily for 15 years before getting ill
    and I know from experience that it is not, not, the thing for me to be doing now. I've tried. What does work is a little from time to time, but so little, that regular gentle
    stretching is more useful and without delayed kick-backs.

    Also I did tai chi for 2 years but cannot do that now. It's
    somehow too strong, so can understand how easy it is to
    get wiped out.

    I'm so glad you're feeling cognitively better; who said
    a mind is a terrible thing to waste? Who remembers? Not me.

    On a lighter note do you watch TV? I've been catching
    the British series "The Office" and the Brits just know
    how to do tv. Also saw "Me, You and Everyone Else we
    know" this week and it's a lovely life-affirming movie
    with quirky characters; totally not Hollywood fare.



    [This Message was Edited on 09/24/2005]
  4. pastel

    pastel New Member

  5. tansy

    tansy New Member

    I referred to has been posted here, you can find it at http://www.immunesupport.com/chat/forums/message.cfm?id=629223&B=FM#629223

    Dr Sarah Myhill’s web site is easy to find using a search engine.

    IS = immune system.

    I can only watch TV for very short periods of time; it sets off a strange seizure-like state that is very unpleasant which then takes many hours to settle down again. The Office was very popular in the UK, I enjoyed it too. When I want to watch something specific I record it, then watch the videos a bit at a time. I have not seen "Me, You and Everyone Else we know" yet, it sounds like the sort of film and TV programmes I chose to watch as well. Quirky characters sounds right up my street, have to blame my upbringing for that, I grew up in a family where quirky is the norm.

    Life affirming, feel good, and comedy TV programmes and films are my favourite. Other than that I tend to opt for documentaries and programmes that educate me. Before I was ill I loved programmes, books, films and plays that were challenging; now they often end up just confusing me or wearing out the few little grey cells I have left.

    Due to weak joints and spine issues (genetic) I also did yoga and exercised regularly. Keeping my muscles strong helped reduce the discomfort/pain and frequent minor injuries; now whatever I do I cannot rebuild my muscles in the normal way. However, there are some y-dan movements which I hope will maximise what I need from them before I reach my limit. I actually had to stop two of the ones I was doing, but only because of the PT I have been given, atm it looks like it will have to be one or the other. If I can ever achieve many repetitions of “Breathing Like a Turtle” I reckon it’ll do more to strengthen my core muscles than anything else I’ve tried or been advised to do so far.

    I read your comments as they were meant, but thanks for ensuring I did not misunderstand them.

    I was Dx with ME years before the construction of CFS, and diluting the criteria. A higher % then reported similar muscle problems that were not connected to the central fatigue. Then, as against now, cases were often referred to as either having muscle involvement or not having muscle involvement. So much has changed since the insurance industry and psychologisers have been allowed to influence how ME and CFS are defined.

    love, Tansy

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