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ME/CFS and the Magic of the Canine Factor
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has anyone really benefited ie cured by exercise?

Discussion in 'General Treatment' started by jann1033, May 16, 2014.

  1. jann1033

    jann1033 Senior Member

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    @jann1033 I was told 5yrs as well by an internist who now believes it doesn't exists. I guess he figured if you are not well after 5yrs then it must be in your head. whatever.[/quote]
    Lol, exact same thing happened to me. Interesting about the relapse as that also happened. Around the 10 year mark had a horrendously bad relapse and while out of necessity, I changed my approach, i never got back to where I was pre relapse.before I had some tines of probably 50+% pre illness energy, now its never above probably 30%. This last relapse while not as severe was weird too. Least amount of overexertion ( like when I parked instead of valeted at the Dr yesterday) and I'm walking like i m drunk, even with a cane I hit the hall walls a number of times trying to get back to the car.I really hope that goes away.
    rosie26 and Mij like this.
  2. rosie26

    rosie26 Senior Member

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    I had a shocking relapse at my 10 year mark as well and it was severe in some different ways to my onset which threw me. I now have no confidence in this illness, it doesn't play the game of increasing improvement year by year until well. I feel like I am locked into it and I have to be careful always.
    jann1033 likes this.
  3. Mij

    Mij Senior Member

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    Was there a cause that you know of for the relapse?
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  4. rosie26

    rosie26 Senior Member

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    I'm glad you asked Mij. I should have added how the relapse happened.

    1) My mother was very sick in hospital for 3 months and I had to go backwards and forwards to the hospital every 2-3 days - I was overdoing it extremely. I could feel myself going down but I had to get the hospital - she was so ill.

    2) Menopause symptoms hit on me at the same time for the first time - hot flushes, on/off periods.

    3) I was also hit by a very hurtful and painful relationship break up which happened at the same time as well.

    I am still climbing out of this relapse I had two years ago.
    SDSue, Mij and Sushi like this.
  5. Mij

    Mij Senior Member

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    @rosie26 I'm so sorry to hear this. That sounds like a lot to deal with. You have to take good care of yourself now.
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  6. SDSue

    SDSue Florida

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    Wow, Rosie, your relapse scenario is eerily similar to mine. The factors just add up to overload, don't they?
    rosie26 likes this.
  7. jann1033

    jann1033 Senior Member

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    Oddly, mine had basically nothing that happened except once again bronchitis a month or so before, no penicillin that time. I had been about 50% pre CFS ability, actually doing well and got knocked out of the ball park by a flare that started with me in a car with friends and suddenly having to lay down. Usually before that I felt a flare coming on and if i stopped it seemed like it would only last a few weeks at worst but not this and usually started as a flare up then proceeds to relapse. This was like initially onset, sudden and full blown.
    This last flare I know what I did, 3 surgeries in 11 months then moving on top of it so not really a lot to wonder "why" about. I am having a knee replacement end of June and I'll be shocked if I don't relapse big time since I'm already not great..
    or maybe it'll surprise me and go away haha...
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  8. SDSue

    SDSue Florida

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    This is exactly why I, too, now have a healthy respect for this thing. Looking back, it's all so clear. But the question is: what can we do differently next time? (I have to assume there will be a next time)

    I prove to myself almost daily that I can't be trusted to properly pace. I have such an unrelenting desire to go and do. One ounce of energy and I'm doing something wild like unloading the top rack of the dishwasher all at once. So how can I possibly be trusted with a remission - especially after being housebound?

    Remission must feel like being hunted; always looking over one's shoulder. Or perhaps one goes back to the denial phase, believing that relapse won't happen to them? It scares me - going backward really, really scares me.

    ......... so go the late night musings of a foggy brain
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  9. SOC

    SOC Moderator and Senior Member

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    Have you tried HR monitoring?...... Oh wait, you haven't had the CPET, yet, right?

    I'm like you. I have an unrelenting desire to go and do and am not able to properly pace instinctively . What saved me was learning my AT via CPET. Then I had a concrete number to stay below, so it was no longer a judgement call for me. When my HR alarm went off, I sat down immediately. The good thing was that I stopped continually PEMing myself and stopped going downhill. The downside was I had to cut back my activities A LOT to stay under my AT.

    Knowing my AT, wearing an HR monitor continuously, and religiously staying below my AT took a lot of the worry out of pacing. I know what I can do now and don't worry that I'm going to crash myself. Much less scary.

    Of course, I still screw up. :rolleyes: Last weekend I went to a peony garden and decided to walk (100 yds) instead of wheelchair since I was feeling better. Unfortunately, I forgot my HR monitor. I walked anyway.:bang-head: Now I'm in the worst PEM I've had in years. I simply cannot judge how far I can go beyond my routine activities without that HR monitor.
    SDSue, jann1033 and rosie26 like this.
  10. jann1033

    jann1033 Senior Member

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    Yeah, I had intended to get a moniter but forgot due to my sieve brain. Is the cpet the bike thing? I couldn't do that with my knees but I did read an article that described how to know when aerobic energy kicks in then keep hr below that.
    Mentally that's the problem to accept for me at; least feel better and don't do anything, feel worse and do a little. So have a little life or no life:):(
    Last edited: May 31, 2014
  11. SDSue

    SDSue Florida

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    @SOC - I, too, have a HR monitor and I love it!!! I had a CPET done by the evil place so I don't have My VO2 Max yet, but I know that I get symptomatic above 120 BPM. So, until I get back to INIM for the real thing, I set the alarm at 120 and sit when it goes off - most of the time lol. I find that 121 really makes me mad :mad:.

    Now that you mention it, this does seem to have stabilized me. I haven't had a shades-drawn bed day since I began wearing it. True to POTS, standing is the worst, while walking down the hallway seems OK. I have yet to "take this show on the road" and walk outside. I know that I need a long long long period of stability before I try anything, let alone an "exercise regimen" lol.

    So sorry to hear of your recent PEM. I try to tell myself that things like a peony garden (sounds heavenly!) are worth it, but that's hard to remember in the throws of the aftermath. I let fear take hold.

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