A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Help me plan my life? How has your ME changed?

Discussion in 'General Symptoms' started by alexa, Aug 21, 2011.

  1. Graham

    Graham Senior Moment

    Sussex, UK
    Hi Valentinelynx

    Didn't you know that ME/CFS stands for "Miracle Evermore Concealed From Sufferers"? I think we drive ourselves mad trying to work out what is behind the cycle of good and bad patches, and never really get to the bottom of it. Even when we have sorted out the boom and bust cycle, we still hit good and bad patches for no obvious reason. I'm amazed and impressed that you did as much as you did. I have had 40 responses to my survey so far (mentioned below): for some people the variations over a year are minimal, but for others there is an enormous gap between their good and bad patches. I find it so frustrating that all the studies on ME/CFS fail to take account of the natural and unexplained variations in our conditions over time. (I would be grateful if any of you felt up to taking part in my survey - it isn't a properly "official" study, so we need bigger numbers for it to be authoritative.)
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    With your medical background, can you share what testing and treatments you have tried and been helpful and also other coping strategies u have used, which u must have had to get through all that study and pressure and possibly the stigma from collegues of doing medicine and having cfs, or just didnt tell anyone. Myself being a shift worker for 22 years, i would be interested to know how you have handle that aspect(shift work) as well. We understand theres no magic bullet or the medical world would be making a fortune off us.

    Thanks for sharing your experience.

  3. valentinelynx

    valentinelynx Senior Member

    Thanks for your interest. Wish I had something useful to convey. Mostly I've avoided seeing physicians and have had no special tests. Early on I saw Dr. Jay Goldstein, a CFS expert that retired in 2003. He found me to be somewhat challenging, in that I didn't respond to most of his treatments. One, however, made a huge difference, immediately and for several years: ketamine. He gave me an IV infusion (low dose over an hour) and I was nearly normal for about 2 weeks! Subsequently I would use small doses periodically on my own, which helped, but didn't repeat the "cure" effect. Based on my response to NMDA antagonists (which ketamine is), he started me on methadone (which has a small NMDA antagonist effect in addition to being a mu opioid agonist) and it helped considerably. I still take it 10 years later, but I don't think it is quite as powerful for me anymore. I take other meds for pain control, and that is the primary extent of my treatment over the years. More recently, after my crash in 2009, I've seen a naturopath who found I had some nutritional issues (extremely low magnesium stores) and mild hypothyroidism. These issues have been corrected, but I can't say I feel much better for it.

    During the years of my relative remission, I pretty much pushed away thoughts of my illness and just kept taking the meds that seemed to help. Now I would like more extensive testing to figure out exactly what my issues are: POTS? viruses? exercise physiology problems? I'd love to do SPECT or fMRI. I contacted Dr. Peterson's office almost a year and a half ago, because I know he does such testing, but haven't heard from them for a year now. Perhaps I'm still on the waiting list. But again, I tend to just let things slide having to do with my health.

    As for coping with stress and pressure, I don't know any magic. I just put one foot in front of the other, one step at a time. Fortunately, I've always been good at staying up late, so working long hours wasn't too bad. My problem comes in getting up; I feel horrible after sleeping. Re: stigma... I told a few people in medical school, gave some lectures on CFS and such. The Dean knew, because he allowed me to take 2 extra years to finish med school, he seemed to be sympathetic. During residency (anesthesiology), though, I kept it entirely to myself for fear that anyone knowing would cause them to look for weakness. Such an unhealthy, unsupportive atmosphere. There was one guy on the faculty who would mock me for lying down in the call room during the relatively quiet morning periods when I was covering the PACU (recovery room) of the main OR (which would be total insanity every minute from the early afternoon on).

    I always wished people could know just how much harder it was for me, so that instead of my always being afraid they would think I was being lazy if caught resting, they would know it was the total opposite. The peak of that petty feeling was when at medical school graduation I didn't get elected to AOA (the honor society) despite my grades qualifying. I suppose they (other honor students) thought that having an extra 2 years made the accomplishment less impressive somehow. I really don't know how I got though internship and residency; I just kept going. Every minute off I rested (read: collapsed). That it had an end point was key, I think. Particularly for internship. There's an aphorism interns know about every minute passing getting you a minute closer to the end of internship. I took that to heart: I even had a count down clock set for the last day!

    One thing I can say helped with pain and emotional state when I was at my worst: mindfulness meditation practice. In particular I went through the program created by Jon Kabat-Zinn in Full Catastrophe Living. I did it myself, and then when referred to an otherwise useless pain doc at Kaiser in Santa Clara, was hooked up with a great program by Kaiser where they had a guy trained in the program present it as a 10 week (or so) course. It helped with pain and stabilizing mental state, and the very gentle yoga exercises actually got me able to move around again. I was already starting to recover by then, but the yoga exercises increased my core strength sufficiently to get me back on my feet. In later years I found meditation helpful during the periods when I would get myself in the habit of doing it.

    In those desperate years after my first crash I tried all kinds of supplements (I still do that but can't pin down anything as helping much), weird diets (macrobiotic), Tibetan medicine (the Dalai Lama's personal physician when he came to Berkeley), Bach flower essences, who knows what all. On my mom's instigation, I was tested for hemachromatosis (negative). I was able to "fix" my lactose intolerance that started with the illness and puzzled the heck out of me for a few years because I couldn't imagine how I could suddenly become lactose intolerant. I think taking glutamine was the trick for that but I can't be sure.

    Then, one day I suddenly felt better: I sat up one day and thought, "Wow! I just sat up without any trouble!" I'd been having to roll to my side and gradually push up from there. I'd been taking some kind of anti-Candida supplement with caprylic acid that week, so I thought maybe that was the magic bullet. Sadly, though, it didn't turn out to be during subsequent relapses.

    This turned into a rambling ramble, without much useful info, I think. I think my primary "secret" is stubborness. However, that also leads me to constantly overdo. I can't exercise just a little, so I always have PEM. I'm far from a role model, I'm afraid.

    Thanks for "listening"!
  4. Graham

    Graham Senior Moment

    Sussex, UK
    Thanks Valentinelynx: that is fascinating - it must have taken some effort to get it all down. It's odd, isn't it, how some things give us a short burst of improved energies, then the effect wears off. It's as if there is a long chain of chemical events in our bodies that is malfunctioning and boosting one gives a temporary improvement, then other bits in the chain cause the blockage (a bit like cleaning sewers I guess). For me B12 injections, low-dose prednisolone, and keeping off lactose gave me the same temporary boosts.

    I was lucky: my department had known me for many years, so when I went down with it they were both shocked at the severity and very supportive. You have my admiration for coping with all that antagonism!
  5. Mary Poppins

    Mary Poppins 75% Smurf

    Alexa - I haven't read the whole thread, so please forgive me if I double up on what someone else has said.

    I read your initial post and my first thought was to tell you to breathe. Slowly and deeply. It's actually going to be ok. It's not the life you planned when you were a little girl, but then nothing ever is, is it?

    You've got a really mature outlook, and that's wonderful. So often we get caught up in the 'it'll get better when I feel this' or 'it'll get better when there's a cure'. Your life is being lived NOW. Not when things are optimal. Now.

    Do you have some real life support, a trusted friend, a colleague, a social services agency you can access? I would really suggest chatting with someone and unpacking all the emotions, loss, adjustment tensions, reorganising your priorities, and finally settling on some revised hopes and dreams (if you have to. You may just need more tome to complete them).

    Adjustment to a life changing diagnosis is such a crucial part of regaining control over your own life.

    If you want to PM or use the private chat function I'm happy to talk to you if you want.

    Re: children, I'm not sure how old you are darls, but I reckon you cross that bridge when it happens. As previous posters have said, everyone is different and at the moment, it seems like dealing with the here and now is quite enough. The future will happen. And it is quite capable of taking care of itself. lol.

    You just look after YOU for a bit, so you can be good and ready for the future when it creeps up with some wonderful surprises.

  6. ukxmrv

    ukxmrv Senior Member

    I was a young university student when ME struck and I had to give up my studies as too sick to continue. When I look back on the last 28ish years there are some regrets and some good decisions.

    The graded exercise programs, the psychotherapy/CBT and most of the experimental and alternatively therapy things did not help me (in some cases made me worse and in others only helped a little) and if I could go back in time I'd save the money and buy a house instead.

    In the end not having a degree didn't turn out to be important but having a talent that I could use to fall back on and earn money in the "good" times did.

    Friends, family and relationships have been very important to me over the decades. Finding a good partner is the single thing that has brought me the most happiness.

    My advice to anyone with ME would be to find work that can be done part time, at home or under short term contracts. I'd not consider a career or any training that didn't return this as the benefits for me have been huge. Not only for money but for mixing with non-ME people and finding supportive friends and eventually a partner.

    We weren't able to have children and that really hurts still. I can't tell when I will feel in the future but my guess is that hurt will alway be with me.

    I regret not being able to buy a home as well. Living in rented accommodation has been terrible for my health. It would have been better for me to spend money on a home rather than chasing treatments in the end.

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