has anyone really benefited ie cured by exercise?

[jann1033]

@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]

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.

 

[Mij]

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.

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

 

[rosie26]

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

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.

 

[Mij]

@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.

 

[SDSue]

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.

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

 

[jann1033]

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

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...

 

[SDSue]

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...

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

 

[SOC]

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

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. 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. 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.

 

[jann1033]

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. 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. 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.

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

 

[SDSue]

@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 .

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.

 

[Unduki]

I concur with the above post. Speaking from decades of experience, CFS is the most inconsistent thing I've ever had to deal with. It does not play fair, ever. That said, our bodies were designed to be used. We were made to move. I don't know about anyone else, but if I don't move, I ache more. Over the years I've developed several routines that I use depending on what CFS would allow. I also determined to lift my hands as high as I could over my head, every day and least once. I wasn't always successful but I think better off for the effort.

It wasn't until I started experiencing remission that I was able to exercise more. I don't think exercise cured me.

 

[stridor]

I have to give an update. My venture into exercise failed after about 3 weeks. I do pretty well with just daily routines. Work is mostly sitting at a computer. I can walk a mile without giving it a thought. But I can still crash. I don't get the post-exertional lag anymore, it happens and then I slowly recover.

 

[jann1033]

Had knee replacement end of June. Today is the first day since i have felt like anything close to human . I dont know if it was the actual surgery as much as the 12weeks of pt. That about killed me. I finally stopped it before i got to where i could as i was afraid it was making the cfs to bad. So to me that pretty much proves exercise is crap. The last therapist i had actually did all the work moving my leg but it was still too much.

 

[Keela Too]

Just another vote for using a HR monitor. I haven't had the CPET test but used the basic formula of:
HR to stay below = (220 - my age) x 0.6

I can't always stay below this, getting dressed for example always puts it over, but I minimise (and record) the time I spend over this level each day.

I also use a Fitbit to monitor the distance I walk, and these two things have finally led me to some stability in my condition.

It's not easy, but I like feeling more in control, rather than illness striking me down unpredictably.