Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Mild, gradually worsening cfs?

Discussion in 'General ME/CFS Discussion' started by sleepingbeautyxxx, Jan 26, 2017.

  1. sleepingbeautyxxx

    sleepingbeautyxxx

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    Hey, I'm pretty new to this me/cfs thing and would like to know if someone can relate...
    When I was 14, I got herpes zoster. I can't remember a drastic change in activity immediately after I had this (after it went away), probably only a mild fatigue. But pretty much since then, my energy level worsened gradually. I started taking naps bc I was exhausted after school, then I started getting these (as I describe it) "adrenaline kicks" and sometimes also heart pounding out of nowhere. It would last hours on some days, or only minutes on others. Probably a year after the shingles I got a bunch of infections, like tonsil infections, blatter infections... a cold here and there. Also I experienced bad limb pain especially in my legs on some days, like you do when you grow. But I didn't grow enough so that this could lead to pain. My height stayed pretty much the same.
    Then, in 10th grade I started getting "air hunger". This also lead to 2 or three mild panic attacks bc I didn't know what was going on. When I went skiing with my family, I suddenly couldn't do it all day anymore. I had to go to the hotel in the early noon and I slept till evening. I was so exhausted and dizzy and this air hunger was extreme. At the end of 10th grade brain fog really started to kick in, which is one thing I hate the most of all the symptoms I experience. 2 months ago I got a flu shot and I was very fatigued, couldn't concentrate at all and felt really weak. I also started getting a sore throat, stuffy nose and a little cough. Also the first time in my life I had mild headaches (never ever had headaches). I also had joint pain and stuff. After a few days of rest it got better, I went to school, sick again. This "cold" comes and goes since then, only now it starts getting better. But when I try to do sports in school, I start to feel dizzy and I don't really have energy to do things the next day. I feel heavy and my brain fog gets worse. Sleep doesn't help at all, doesn't matter in which quantity but more than often I just can't sleep at night despite being exhausted. I never really had bad muscle or joint pain, only mild pain. Now I'm under suspicion of having cfs, got a new doctor and everything. Right now we try to eliminate other diseases, but so far everything's fine.
    I would like to hear if someone experiences the same things and has cfs, since everyone seems to have a clear start of this illness...
     
  2. HowToEscape?

    HowToEscape? Senior Member

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    I start to feel dizzy and I don't really have energy to do things the next day. I feel heavy and my brain fog gets worse. Sleep doesn't help at all, doesn't matter in which quantity but more than often I just can't sleep at night despite being exhausted. I never really had bad muscle or joint pain, only mild pain. ... I suddenly couldn't do it all day anymore. .... early noon and I slept till evening.

    This combo sounds very much like mecfs. I've italicized signs that, when taken together, strongly point to it.

    hmmm. Skiing is actually a pretty good diagnostic marker: not a lot of actual energy output, but you're never horizontal, your system is always being asked to do something (adjust for temp, stand in a bent-knee pose, etc) and there are periods of standing nearly still (waiting in the lift line). Then the "inexplicable" KO out-cold crash after an activity a middle-aged adult can do all day. That's typical of mecfs, and those are some of the markers ignored by what passes for reseach, the standard disease definitions, etc.
    Do you feel OK for a while immediately after exercise? One of the unique things about this disease is the delayed crash - instead of feeling energized by some yummy sporting activity, we get wiped out anywhere from a few minutes to ~4 hours later, and then often KO'd the entire following day. Same for the other things. I'm not an MD, just someone who's been stuck in this nightmare for 10 years, after being sure it would just blow over if I followed a healthy diet, etc. Nope.

    -btw you should probably limit sports & sport type activity to short bursts, drop back to 20 minutes than sloooowly increase. Sorry, I understand how important sports are, but since this disease is like fighting a shadow, you can't risk giving it ground. You should also avoid long stretches of "normal" activity - you need to get horizontal and take a break before you start feeling tired.

    -- am fading out now (that happens a lot), will try to respond in more lucid fashion later.
     
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  3. sleepingbeautyxxx

    sleepingbeautyxxx

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    Thank you very much! I feel somewhat normal immediately after I do sports, but when I get home from my p.e. class I normally have to sleep at least half an hour. I realized that stretching and light yoga exercise is alright. But things like jogging or things that involve orientation/ strength I feel worse than before. The day after I normally just feel like I'm not quite there... very foggy and heavy. I'm so motivated on weekends and always think "I go to bed early and tomorrow I'll do this this and this"... then I wake up and realize that It would probably be better to just do half the things I wanted to do.
    And I can really relate to that diet thing... I always try to eat as healthy as possible. But that doesn't really make a difference either.
    I wish you the best!
     
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  4. sleepingbeautyxxx

    sleepingbeautyxxx

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    I forgot something: I tried to do workouts in the morning since I also have low blood pressure and my doctor said I should do more sports, but this really doesn't make me feel more awake. I really wish I could experience the energy burst after exercise other people experience...
     
  5. HowToEscape?

    HowToEscape? Senior Member

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    I feel somewhat normal immediately after I do sports... then ... have to sleep

    This sounds like a catalog of stuff I had soon after getting to the 'over the waterfall' stage - where I could suddenly do nothing all the time, rather than having mysterious episodes of inexplicably being zonked out.

    That's yet another m.e. onset sign which is ignored in the official Dx points, and completely absent from research.
    Sorry to say, you are in the M.E club. You can't get that combo of symptoms from depression, etc. But, it sounds like you're under 30 and were healthy before, so your chances of making a recovery are much greater than most. I take it you did get energized from sports at one time, but that stopped around when the exhaustion + sleep problems started?
    You need to see a specialist who has numerous other M.E patients and is aware of the few treatments which have shown some degree of success. There are rather few such people, but they do exist. I believe there's a list elsewhere on this site.
     
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    Sorry, although I agree with and appreciate a lot of what @HowToEscape? says, I can't agree with this. If it's ME/CFS, stop all sport now, and forget about trying to build back up by slowly increasing. That's what I did in my first year and I wish I hadn't. Slowly building back up doesn't work, you just keep running into the same wall and making your ME worse long term.

    If you can, stop all sport and get plenty of rest until the situation is clarified. If it isn't ME you can get back to normal later. If it is ME then you'll have to get used to the idea that although sport was a great thing to do for many reasons when you were healthy, it's now likely to damage your health.

    If you turn out to have ME/CFS, then this is unfortunately bad, and potentially harmful, advice.

    I agree with @HowToEscape? that if you're young and in the early stages, then your chances of recovery are greater than most. Reducing activity, resting and avoiding sport will be the best way to increase those chances.
     
  7. ryan31337

    ryan31337 Senior Member

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    Hi @sleepingbeautyxxx

    Your onset sounds very, very similar to mine, only a few years later in life. Naturally i'm biased when I compare it to my own experiences but much of what you say suggests Postural Orthostatic Tachycardia Syndrome (POTS) to me. Both the specific symptoms you experience and the type of onset. I would make very sure you are evaluated by someone that understands POTS, otherwise you may miss a big piece of the puzzle...

    Best of luck,
    Ryan
     
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  8. sleepingbeautyxxx

    sleepingbeautyxxx

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    @HowToEscape? I also don't think I suffer from depression since I'm motivated and positive most days, I just get a little frustrated sometimes when my energy is pretty low. But I guess thats understandable.
    I didn't ever pay attention to if I felt energized after sports, but in 6th and 7th grade I went dancing ballet sometimes 3 times a week. It was usually in the evening, so I had a reason for being tired. But it was that nice, normal kind of tired.
    I'm very glad that I found a doctor at all that has experience with cfs. We dont really have specialists where I live.... unfortunately, Germany is pretty behind in research and all of this.
     
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  9. sleepingbeautyxxx

    sleepingbeautyxxx

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    @TiredSam I should really try to slow down with sports.. my new doctor also says I should try resting as much as possible.

    Thank you for all of your advice!
     
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  10. Sidereal

    Sidereal Senior Member

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    Your onset sounds very similar to mine.

    Re: sports, the reason you don't feel any more awake afterwards is that in ME/CFS exercise actually decreases blood flow to the brain instead of increasing it like in normal people.
     
  11. Dechi

    Dechi Senior Member

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    It looks like ME/CFS to me. When I exercise, I adapt the program to my condition. I can lift weights under strict condition (10-15 seconds lift followed by 1.5-2 minutes rest, total 45 minutes or 7-8 minutes exercise + rest). Aerobic exercise has to be limited to under 2 minutes or you will crash.

    Flu vaccines are usually not recommended for us.

    Hang in there, read about the pacing strategies, anaerobic threshold, heart rate variability and other ME managing strategies. They help a lot to avoid crashing.
     
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  12. sleepingbeautyxxx

    sleepingbeautyxxx

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    @Dechi I can do a bit of strength "training" too, without having a noticeable crash. But sports in school is definitely too much most of the time. (I don't experience a big big crash like others do, but I definitely feel worse)
    My doctor told me I should look into pacing, but I find it a little bit complicated. I mean, I already follow it naturally. I go to school, sleep a bit, do the rest of my school stuff and go to sleep. I might read a bit or do some stretches, but nothing more than that. My weekend usually consist of a little bit of time with my friends or boyfriend and a lot of rest, and of course more school work, so the next week isn't too hard. But especially the next months will be full of exams again and I'm a bit worried. Does this already count as pacing? I don't know where I could rest more... the weekends are definitely toooo short.
    This is probably the most stressful time you can have in school and I feel like I'm always just trying to get the energy back in when I don't have to do school work. Its not that I'm extremely sick, but I get symptoms more frequently now and feel like it's getting worse slowly, as I already mentioned.
    Yesterday I noticed that my lymph node is swollen and I got some aching in my arms. But energy level wise not too bad. I hope I don't get sick... my lymph nodes normally don't swell, it only happened one time when I had a strep throat. :(
     
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  13. Dechi

    Dechi Senior Member

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    I see that you are young and going to school. Definitely a challenge. I hope you don't have ME. But in any case, your best strategy, however how boring it is, is to rest, rest, rest as much as you can. You can't rest while in shcool or doing homework, so I would suggest you avoid sports and training all together. If you feel you are getting worse and there is a chance that your beast is ME, then that is necessary.

    Try to spend as little energy as you can during a day. Maybe buy a smart watch and monitor your steps and your heart beat to start with. Your sleep, maybe. Try to have a routine and a very good life : ie watch what you eat, go to bed at the same time every night, no alcohol, no coffee, sleep during the day if you need to, ect.

    Maybe doing this will help you get back on your feet. Go read some threads on the forum and buy the most common supplements to help with energy.

    I wish you the best, sincerely.
     
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  14. TiredSam

    TiredSam The wise nematode hibernates

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  15. HowToEscape?

    HowToEscape? Senior Member

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    TiredSam has an important point: There's no one reliable roadmap.

    A. Crashes begin happening before you feel it; it's like paddling a canoe past the point where you can't paddle away from the waterfall, or the horror movie point where the teen victim decides take the back road to the cabin, and the audience is thinking "Nooooo!"

    B. There are few reliable guidelines other than avoiding crashes - there's NO benefit and potentially long term harm from hitting the wall. Still, your age and general fitness level, I wouldn't go quite so far as TiredSam as to say no sport at all; one loses out on social life, something to feel good about, etc. BUT, we don't know, TS may actually be correct even in your case. About the only thing I'm confident in telling you is that if your don't have a next-day crash, you're most probably OK. If you're exhausted at the end of the week, you must get more rest during the week. Age has a huge effect on health; when you're under 25 your body has a resilience someone age 50 will never have, that includes former Olympians.

    There's no 100%, not even 70% reliable guide, in large part because with our disease official medicine has, with a few overworked exceptions, chosen to obfuscate and ignore rather than observe and cure.
     
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  16. HowToEscape?

    HowToEscape? Senior Member

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    @sleeping ---

    " I also have low blood pressure..."

    Classic ME.

    There's clearly enough to go on that you need to assume you have it and act accordingly. Fortunately you're in an early stage, young, otherwise healthy, physically fit and from the sound of it have a good family. Thus your chances of leaving the club are quite good if you take measures now.

    -------------
    Low BP does not have a 1:1 correspondence with ME, but among people who have it, newly lowered BP is common, much more so than in the general population. It's yet another thing missing from the official Dx criteria, which are written by people who seem to have possibly met three people with the disease, interviewed them for 15 minutes and patted themselves on the back for their brilliant original research. (pardon me if I've grown a tad cynical).
     
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  17. sleepingbeautyxxx

    sleepingbeautyxxx

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    @HowToEscape? Case A. is my fear right now... I feel like I almost reached the waterfall. My symptoms only worsened slowly over the last three years. Then I got the flu shot and now it seems like I can't really go back to the state before. I haven't really been healthy for three months now. And now I have a pretty bad cold/flu. I only have one week of holidays to regain my health somehow.

    My GP has diagnosed me with (still mild) me/cfs now and I try to figure out how to manage school. I want to study medicine so I have to have a high score and I'm overall very ambitious, but I know health is more important...
    A good friend of mine has cfs too (she's one year older than me) and in 11th grade she had a lot of problems with a cold/flu that wouldn't go away and would last for months. She really struggled and got worse. After the summer break she wasn't able to continue school. Now she has to take one year of.
    Right now I'm pretty much experiencing the same and it freaks me out. :(
     
  18. HowToEscape?

    HowToEscape? Senior Member

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    Hi -- I've been sorta zonked the past couple days, am thinking about your condition, I will follow up as soon as I can. It's interesting that you have a friend with an mecfs Dx - I have the impression that it's an uncommon though not extremely rare disease (one in 3000, with substantial uncertainty in that number).
    You have a great deal going in your favor, and also a high risk.
     
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  19. HowToEscape?

    HowToEscape? Senior Member

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    Haven't forgotten, but have been zonked this past week.
     
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