Has anyone on this site cured him or herself of CFS/ME? Did I?

[Little Bluestem]

Thanks for posting your good news and good luck with restarting your career. Try to find time to update us in less that one and a half years.

 

[u&iraok]

Yes, that would be unusual if ppl posted just to hear themselves talk. From the responses it looks like ppl are able to read some longer paragraphs and that's fine. We do comm. via the written word here, and sometimes responses are long. I created the topic and will write how i am comfortable communicating. Others will read how they do.

What ppl can do, however, is choose a few routes to help themselves. One is cut & paste into a doc, then break up into whatever sizes they can read. Another route is simply a search for a key word on a page, which will bring up info. they want.

Lol, were I to do the every few lines para break, someone else wd complain; it's too spread out, the paras don't cohere, etc.

As the 12 step saying goes, take what you can and leave the rest.

I know this is an old thread, but it was so crazy I had to respond. overtrain won't break down his/her answer to help minkeygirl. But I counted 17 posts of back and forth between overtrain and others regarding the courtesy of breaking down the answer vs why overtrain won't break down the answer. Overtrain should have just broken down the answer, it would have just taken one post, lol!

I wonder how overtrain is doing, now, still as good as they were?

 

[Groggy Doggy]

I know this is an old thread, but it was so crazy I had to respond. overtrain won't break down his/her answer to help minkeygirl. But I counted 17 posts of back and forth between overtrain and others regarding the courtesy of breaking down the answer vs why overtrain won't break down the answer. Overtrain should have just broken down the answer, it would have just taken one post, lol!
?

I agree. In the language of disability (ADA), it's called 'reasonable accomodation'. If you are posting to a site with readers that are cognitively disabled, I think its reasonable to request that the information be arranged or summarized into an easier-to-read format. In the spirit of comradery, it makes more sense for the writer to fufill the request, which allow more readers to follow along and also avoids future distractions (more requests for the same thing)

 

[u&iraok]

I agree. In the language of disability (ADA), it's called 'reasonable accomodation'. If you are posting to a site with readers that are cognitively disabled, I think its reasonable to request that the information be arranged or summarized into an easier-to-read format. In the spirit of comradery, it makes more sense for the writer to fufill the request, which allow more readers to follow along and also avoids future distractions (more requests for the same thing)

Well said. I have learned from this thread to break my comments down and use more paragraphs.

 

[panckage]

@overtrain 's recovery sounds very similiar to mine. Very gradual improvement for a year or 2 until my energy was back in the normal range. I no longer had any of the unique cfs symptomology. I was better for about 10 years before CFS hit again....

 

[Karena]

I agree. In the language of disability (ADA), it's called 'reasonable accomodation'. If you are posting to a site with readers that are cognitively disabled, I think its reasonable to request that the information be arranged or summarized into an easier-to-read format. In the spirit of comradery, it makes more sense for the writer to fufill the request, which allow more readers to follow along and also avoids future distractions (more requests for the same thing)

I just stumbled across this thread, too. Thank you for pointing out how reasonable @minkeygirl's request was.

I honestly don't understand @overtrain's reaction. Why be mean to someone who's suffering? Why play some kind of mind game and/or make her go back and re-read earlier posts?

 

[u&iraok]

I just stumbled across this thread, too. Thank you for pointing out how reasonable @minkeygirl's request was.

I honestly don't understand @overtrain's reaction. Why be mean to someone who's suffering? Why play some kind of mind game and/or make her go back and re-read earlier posts?

I wondered, too. Thoughtlessness followed by pride and stubbornness and a refusal to budge? I try to give people the benefit of the doubt but wow, of all the people who should be patient and understanding--someone's who been there or close enough to it. I've seen people who used to be in a bad situation get out of the situation and take a 'later for you, empathy, what empathy?' reaction.

I try to stick with the people who either have empathy or try to have sympathy. Plus I get caught up in overanalyzing because I don't understand meanness and drive myself crazy. Ohhh, like now? There I go again. And I've learned: Mean people are just mean, period. It's simple, nothing to understand.

 

[overtrain]

Still doing great. Yeah, baby. Living in a new state, very happy. Still taking a ton of vitas, herbs, but not overdoing the exercise like I was. Not cleaning up after others (see above) like I used to. I'm not the world's tit. Loving aging for the freedom it brings mentally & spiritually. Be careful of the negativity others can insert into your life.... not your circus, not your animals. Be your own doctor. Do what's right for YOU. Good luck. Will report back in a few years.

 

[AlwaysTired]

@overtrain 's recovery sounds very similiar to mine. Very gradual improvement for a year or 2 until my energy was back in the normal range. I no longer had any of the unique cfs symptomology. I was better for about 10 years before CFS hit again....

Is it the same this time around? Less severe? More severe? Do you know what triggered your relapse?

 

[santi]

I discovered that my CFS was causes by too high electromagnetic radiation. Now, to sleep I have a EMF bed canopy from YSHIELD.

 

[Groggy Doggy]

I discovered that my CFS was causes by too high electromagnetic radiation. Now, to sleep I have a EMF bed canopy from YSHIELD.

@santi

Could you please tell me which model you purchased? I would like to see if it helps.

 

[Ambrosia_angel]

My 'typical' ME symptoms have improved. I don't get PEM at all really but I do get fatigued and I've never been back to what I was before pre ME.
I haven't done an 6-8 hour 5 day week for a very long time though so it's hard for me to measure.

Then again I pace automatically. It's become quite natural for me.

 

[overtrain]

It's now February of 2021 and I seem to be fully recovered. I've been fine since the last time I posted. My physical activity level is far, far lower than it was when I got sick. For me, I think what made me sick was the mono and EBV which dragged on, and my insistence at exercising despite feeling like hell. I've learned my lesson. When I start feeling tired, I STOP what I'm doing now. Hard lesson to learn when I'm pushing 60, but better late than never. I thank the powers that be each and every day that I have my health back after enduring the worst experience of my life that took years to get to the other side of. I don't know what the future holds, but I have the present. Good luck if anyone's reading this , and pls hang in there. There is hope.

 

[Booble]

An inspiration for all!
Out of curiosity, may I ask if you are female or male?

 

[overtrain]

An inspiration for all!
Out of curiosity, may I ask if you are female or male?

Female.

 

[gbells]

Female.

OT, did you by any chance have any animal/insect exposure history and symptoms that might suggest you had a bacterial infection (rickettsia, bartonella) that the doxycycline may have cleared? A combined EBV/bacterial infection seems possible. Doxycyline may have eliminated the bacterial infected and then your body treated the EBV as mononucleosis and reocovered. Most people recover from EBV alone but combined they could persist.

 

[overtrain]

Hi. It's impossible to say at this late date. I was diagnosed by an emergency room doctor with ME/CFS though. I have no recollection whether I ever got tested for tick or animal exposure.

 

[overtrain]

Hi Overtrain,

Just got caught up on this thread, and found your story quite interesting. Just a few observations/comments regarding your concerns about relapsing: --- It sounds like a quite a confluence of events led to your initial breakdown, and since you've been able to identify them, and I assume intend to avoid anything similar in the future, this bodes well for your future health.

Also, it sounds like you've pushed yourself most of your life, and have "over-exercised" a fair amount. You made a comment about being vigilant about not doing that in the future, and I think if you stick to that, it may be your most important thing to do. Paul Cheney once mentioned that he didn't notice any difference between the number of Type A and non-Type A individuals/personalities developing CFS, but did notice a BIG in how their illnesses progressed. I think he was referring to Type A's unwillingness to slow down and let themselves stay in a healing cycle long enough to fully recover.

I think cycles in our lives are important. When we are active, it's important to not overdo things. And when we finish an active cycle, whether for a day, or few days, weeks, etc, we need to honor recuperative and rest times. I think if you can do that, along with all the other things that have somehow brought you to your current improving health situation, then you should be in good shape. --- Thanks for sharing your story.

All the Best, Wayne

Hi Wayne,

Well, here we are, 8 years later. Turns out you were % correct in everything you said. I have stayed vigilant about not over-exercising and it has paid off. I hope you are doing well.

 

[overtrain]

HI Overtrain, so glad to hear of your great improvements and recovery. The anecdotal evidence is that if you are going to make a recovery it is likely to be in the first two to three years. Perhaps this is backed up by Lipkins findings that he saw a difference in the cohort ill less than three years compared to the longer term ill.

I will tell you something of my own experience. Not to bring anyone down at all, but to let you know how it has happened for me.

I had a long remission in the past - considered myself completely cured and i didnt do anyhting special to get there, except sleep an awful lot and have lots of gentle massages and hot baths. Maybe i moved toxins out this way, i dont think i will ever really know. I was 24 when i first got sick and was very very ill for the first 18 months and then started to gradually improve. I was at times bedbound and could barely walk and was in constant pain and had endless respiratory tract infections. By the age of 28 i was living a normal life, exercising (quite a lot, swimming, cycling, walking) i got married and had two more children, lived on the other side of the world and then moved back. Brought a house and did it up, settled into being a full time mum to 4 children doing voluntary work at the same time and running healing courses.

During this time i was very well when pregnant and breastfeeding, but the rest of the time i now see i was not 100% well - my stamina was not great and i had real problems increasing fitness. I still had a lot of infections so ended up taking steroids for quite a while. I went to the doctors a lot with varying weird problems, but essentailly i was ok. The doctors never found anyhting wrong and presumed i was depressed (i wasnt)

I told people i had fully recovered from M.E. I couldnt understand why others didnt recover also - after all i did. To be honest i didnt want to dwell on those awful years and turned my back on it all and tried to forget about it.

five years ago i caught measles from one of my kids, and then developed pneumonia, then pleurisy. This was after two extremely stressful years of building a house in a new part of the country and my husband working away from home all week and only coming back at weekeknds i was also working two days a week as a gardener doing very physically demanding work. I had started noticing that my ability to handle stress was becoming impaired and it was harder and harder to cope - i felt exhausted all the time. Determined not to be ill again i pushed through - thinking i just neeeded to get fitter ( a state that had aluded me for years) Then i had to have minor surgery - supposed to be back to normal the next day with no heavy lifting and i crashed hard and couldnt get out of bed for two weeks.

I then became extremely ill with severe M.E. It was considerably worse than the first time and has lasted for much longer - although i am now on a very slow recovery curve. I am still very ill though and depsite feeling much better than i did at my worst 5 years ago when i couldnt speak to my children or share a meal with my family and couldnt dress myself some days i know dont know if i will ever recover.

I am mainly housebound and have to use a wheelchair for 'walks' and trips out. I rarely drive myself and have no independance. I now realise, looking back that i was still ill with M.E in the intervening years but only very mildly. I put way too much stress and strain on myself, not knowing that this could be the consequence for PWME. My personal opinion is that remission, rather than recovery is what people are achieving - and that is great. I would happily go back to the only mildly affected if i could and am hoping to get there. Like Dr Bell has seen, many of his patients thought they were recovered when infact they have just improved some and then changed their expectations.

I do wonder if some people who bounce back quickly (i mean in the first couple of years) are recovered compeletley, and i really do hope they are, but my own experience shows that whilst you shouldnt be worrying about it all the time, being very careful is important. If i do get back inot a good remission i am worried that i will become uptight and paranoid. After all this illness takes so much away then when we feel well we just want to have it all!

Take care and all the best.

please excuse typos - this has taken it out of me and i dont have the energy to go back over it and change them all.

Justy.

Hi Justy,

I was wondering how you are doing these days. I never forgot your (this) post over the years. I hope you are doing well, or at least better. All my best, Overtrain.

 

[overtrain]

Came to this site today after reading a preprint, not peer-reviewed, research article on a site called Research Square about what's showing up in people who are having post-vaccine health problems. These are folks who only had the vax but not Covid.

Then I read the site-wide rule an article has to be peer-reviewed first to post it here. I never got the shots nor have I had Covid, but have read numerous accounts of problems with both the shots, and, of course, Covid itself.

It's been fascinating to watch the world pay attention to Long Covid after spending decades ignoring us. Welcome to hell, I guess? In the end, maybe we'll all finally get some answers. At least we're more on the map now.

I say *we* because I'm aware CFS/ME can make a nasty revisit to my life at any time. Like many, it struck me after a bad flu which then activated EBV, or I caught Mono while I had the flu, who knows. I'd never had Mono in 50 years before coming up with very high titers.

It's now 12 years later, & I thank whatever forces are out there I remain healthy. Able to think, read, exercise, find my car in the parking lot, leave my house at will, make it to the bathroom, wake up refreshed, climb- even run!- flights of stairs, tolerate noise & light (better at least), you know the drill. For years all of that was a dream, to live like a 'normal' person with routine activities that don't put you crashing in bed for days.

Like nearly everyone else here, I'm under enormous financial pressure right now, & today I'm reading through various threads here to drive it home to myself I can't push more than I am, that I need to remember to eat, because I'm underweight at this point. Rest, eat, breathe, rinse, repeat. Another key for me is not running myself ragged helping others. This may be the hardest lesson for me, to put myself first. Overcoming the female socialization that was strong growing up in the '60s & '70s.

Before anyone asks, once again, whether I was ever officially diagnosed by a physician, yes. And I return to this post each year with no "cure." I don't know what perfect storm caused my illness nor do I know what I did that worked effectively enough to cure it, or throw it into remission. It could have been nothing whatsoever I did. It may have resolved itself in spite of everything I did, like hundreds of $$ in supplements, herbs, teas, all that. Most doctors were useless in Iowa where I lived. Still furious about them.

Early this year I even worked doing heavy physical labor with hundreds of unmasked people at a warehouse. Thought for sure I'd catch Covid. Nope. When I was so sick way back, I used to drive myself *nuts* combing this site for what worked for others that made them feel better if only for a day or two. I still believe CFS/ME is the luck of the genetic draw, that something in my system caused my reaction both in getting sick, then recovering. If I could pin any of this recovery on anything, I certainly would post it here. It's scary to have no idea about or control over any of this life-altering misery. Especially infuriating to see how often the LC aren't believed, told it's all in their pretty little heads.

Until 2023, stay strong as best you can. Listen to your body, do what's right for YOU.