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Malaise - How do you deal with it?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by drewf2, Dec 3, 2017.

  1. drewf2

    drewf2

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    I am a new member here although I have been on these forums a lot over the years I decided to finally sign up! I have had CFS symptoms for around 15 years now, It started when I was 21. 4 months ago I had a major virus, not exactly sure what it was, It was believed to be Ross river virus (mosquito virus) along with vertigo and it totally dropped me even further down than I already was. Since then I have developed worsening fatigue, depression and anxiety but the main symptom i find extremely hard to deal with is malaise.

    Typically if I push too hard or have a stressful period of time now I get malaise for about 7 days, it's best described for me as a flu without the flu symptoms, an uncomfortable feeling, a sick almost poisoned feeling that cannot be pinpointed to anywhere on the body in particular. I can deal with fatigue, depression and anxiety but the malaise is really hard to handle and really pushes me mentally to the point of despair.

    Malaise seems to be unique to each person but I was just interested to know if anyone has any methods of how to deal with it? and what has worked for others to lessen the feeling or shorten how long it lasts? Mine does not seem to respond to any treatment I have tried so far it just randomly settles down after a week or so. Any info would be much appreciated.
     
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  2. Dechi

    Dechi Senior Member

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    I am sorry you’re not feeling well. Is what you call malaise actually PEM (post-exertional malaise?)

    The only recipe to treat PEM is aggressive rest. Do you still train ? If so, training, in any form whatsoever, will just further exacerbate your PEM. How much do you rest ?
     
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  3. Mary

    Mary Moderator

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    I don't know if you have post-exertional malaise (PEM), the hallmark of ME/CFS. It can occur in response to physical, mental or emotional exertion. For me it takes the form of being completely wiped out, feeling like I've been hit by a truck and the only remedy is to do nothing until it passes. However there are some supplements which can potentially help lessen the duration and maybe severity. See this thread: http://forums.phoenixrising.me/inde...ce-pem-post-exertional-malaise-crashes.48438/

    Branched chain amino acids cut my PEM recovery time in half. I've been taking them for about 3 years now. I take them daily. I'm going to be experimenting with cumin seeds, as described in this thread: http://forums.phoenixrising.me/index.php?threads/possible-pem-blocker.56232/

    Your malaise sounds very similar to detox reactions I would have, generally in response to a supplement or food which had "cleansing" properties. Toxins would get mobilized and circulate through my body and then just resettle. It happened over and over again. and my symptoms were fatigue, feeling poisoned, digestion would be off - felt like crap. I eventually seemed to get my detox pathways working properly with the use of glycine, inositol and glutamine. I think a big issue for me was mercury and also some chemical solvents I had been exposed to years ago.

    But your malaise occurs in response to exertion, physical and mental, so it may be a different form of PEM. You might try some of the PEM busters and see if they help.
     
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  4. drewf2

    drewf2

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    It's actually hard to say, i have low level malaise all the time now since this virus so I've had to reduce physical activity to just going for a short run at a maximum otherwise I'll get it back but it also happens after a flu or illness or even after a stressful period and always last around a week until it settles. I've always pushed through fatigue but when I have the malaise I won't do anything strenuous until it subsides. The malaise isn't always tied to fatigue, a lot of the time I will not be extremely fatigued when I have it.
     
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  5. drewf2

    drewf2

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    That's interesting because I have experienced Herx reactions to many things that I didn't think would give me a reaction and this could quite well be happening from something I am taking! also my liver bilirubin levels are always sky high, doctors say Gilberts but I am not convinced so it could also be detox pathways as you say. Luckily enough my hair tests show no heavy metals surprisingly because I was a boilermaker welder for years. Thanks for the info on these threads I will look into them, I will give BCAA's a go and see if it works, glutamine I have had a good response from in the past also. I think I tried to return to physical activity too soon, Ross River Virus can affect regular healthy people for 6 months or more so I was always going to be much worse and take a longer recovery time. My problem is I had a protocol that worked fine for my previous state and got me through the day, since the virus that protocol is no longer working and causing this malaise so I have to re design a new one!
     
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  6. Mary

    Mary Moderator

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    1. @drewf2 - I hope those things help you. FWIW, the glycine hit me like a truck -it caused a very strong detox reaction and I found I had to take it in small doses initially. I was taking it for sleep. I was also taking inositol for sleep but it did not hit me as hard. Anyways, eventually the detox reaction stopped happening and I realized I was no longer detoxing at the drop of a hat, and then read that those 3 amino acids were necessary for phase II liver detoxification. https://www.diagnose-me.com/treatment/liver-detoxification-phase-II-support.php
    good luck! (I don't know how the above formatting happened, but can't undo it :confused:)
     
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  7. *GG*

    *GG* senior member

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    No novice to this site or the illness. Chat me up if you want via Conversation. I don't talk much about all I can do with this illness, still lots I cannot do, I have medical documentation that I share freely to the nay sayers who think I don't have ME/CFS!

    GG
     
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  8. hellytheelephant

    hellytheelephant Senior Member

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    Hi
    Malaise is one of my symptoms too. I have not found any treatment other than bed rest that works, but I do suggest pacing, which is not a cure but a means of using the energy you do have over longer periods. If you are regularly 'crashing' yourself it means you are perpetually beyond your means, which over time can reduce your overall level of ability ie. you get worse overall. Once you have worked out what level of function you are then ideally you will plan your time accordingly...although there will always be things that are outside your control.

    This is a very good site for info and they also do an online course you can do as part of a virtual group to learn more about it.

    The course: http://www.cfidsselfhelp.org/online-courses/introductory-self-help-course
    Article on pacing: http://www.cfidsselfhelp.org/library/how-i-use-pacing-manage-cfs

    hope this is of help

    Helly
     
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  9. drewf2

    drewf2

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    Sounds interesting, I find when i keep busy I can push the malaise feeling out until it gets too overwhelming and I have to stop. The idea of pacing sounds like something I should try.
     
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  10. hangininthere

    hangininthere

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    For that poisoned toxic feeling, I take a charcoal capsule and it snaps me out of it by the next day.

    For throbbing malaise, it helps me to rub Lidocaine lotion on my arms which throb the most at those times. I still have to lie there helplessly and rest all week, but the Lidocaine helps ease that awful throbbing ill feeling of Chronic Fatigue Syndrome malaise.

    Patti
     
    Last edited: Dec 16, 2017
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  11. Runner5

    Runner5 Senior Member

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    I've had the same result. If I exercise I need to use a sport drink during like Vega and afterward absolutely must have a recovery shake at which time I usually take BCAA, L-Glutamie and Magnesium (or I mix them into my shake).

    I have no idea why this wacky thing I do works, but if I skip it, even once even a little bit - I'm down and out for 2 days to a week if not longer.

    I will also add that for me, personally, my amino acid absorption is completely hosed. I tend to take aminos every single day.
     
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  12. Mary

    Mary Moderator

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    What aminos do you take every day? Are they specific ones or a combo? Many of us have various amino acid deficiencies.
     
  13. Runner5

    Runner5 Senior Member

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    At the moment I have a bad stomach and bad GI -- I'm not entirely sure what's wrong, I have a DX of chronic gastritis. I was born unable to digest a whole wide array of foods, so possibly it's just ... who knows.

    L-Glutamine -- helps the lining of the GI and stomach heal up, without this I'm in deep trouble.
    L-Tyrosine -- helps with anxiety and mood, I haven't been depressed or anxious since starting it.
    (Magnesium) -- really important so had to mention it
    L-Theanine -- I take sometimes with the L-Tyrosine. Many people says it relaxes them, it gives me energy. Hmm.
    Zinc L-Carnitine combo -- been trying this lately for my stomach, my stomach is actively just having a fit at the moment. I'm unsure if it is doing anything.

    L-Tryptophan -- Gotta be careful with this one. I take 1/8 - 1/4 teaspoon in powder form and I sleep like a baby. I'm very sensitive to it but as an insomniac it's a lifesaver -- but if I take a full capsule I'll feel like a zombie for days afterward.

    BCAA, L-Glutamine, when I work out

    Now Brand Amino Acid Blend -- When I feel terrible and I just can't figure out anything else to do, I take ye' old Amino Acid mix.

    After working out usually some sort of protein drink, but usually not a full scoop or a full serving. They can be hard on my GI. But when in a pinch and I haven't had my aminos with me and needed them I can usually find a protein shake with added BCAA and L-Glutamine.

    I kinda figure this might be just a quirk of my weird digestion. I also suspect that sugar blocks my digestion of amino acids (I have a heck of a sweet tooth that deeply shames me to admit). I have a lot of problems with whole grains and have to avoid them, but I still eat some refined grain although I shouldn't (again - total shame) and I can't digest dairy very well but it's hard to avoid also as is caffeine in my life. So all in all, I don't eat the way I should - period. But I also have to avoid all citrus and fodmaps. So the list of what I can't eat is staggering and impossible. I suppose if someone asked me, "what can you eat and digest easily?" Um' maybe broth. Bone broth right now seems pretty safe.

    EDIT >> I forgot to mention something extremely important. If you are taking prescribed medications (particularly psych meds) amino acids can interact. Particularly L-Tyrosine & L-Tryptophan.
     
    Last edited: Dec 20, 2017
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  14. drewf2

    drewf2

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    Funnily enough I just started trying charcoal tablets, my malaise had already subsided but next time it comes I will take them, another one I just started is calcium d glucarate which should help with malaise hopefully.
     
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  15. drewf2

    drewf2

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    Id like to take l-tryptophan for depression, have you noticed any benefit in that regard? Tryosine I am noticing works pretty well for depression but Tryptophan is supposed to be even better?
     
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  16. Runner5

    Runner5 Senior Member

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    In my family there is a history of severe black depression -- not the "oh I was depressed and didn't even know it" -- the kind where you can't sleep, you can't smile, you start crying for no reason, you feel like everything good is dead in the world -- the real deal scary stuff, started for me at about age 12/13. So when my son at age 10 developed this and wouldn't leave his bedroom, didn't want to go to school ever again, wouldn't eat, and couldn't smile or join in life - it scared the hell out of me.

    For him I use L-Tyrosine during the day and at night L-Tryptophan full dose for him (500mg) and that pulled him out in about three days. A few times a year he had to go back to the aminos and he has to watch what he eats. When he gets head first into a junk food phase he will get sick all over again.

    So yeah I think they work really well together against depression and anxiety. My son is 17 now and about to graduate high school with a 3.8 gpa and is student vice president. He only takes the L-Tyrosine and L-Tryptophan when he starts to dive into depression usually or if he feels anxious. He's done amazing.

    I would definitely space them apart though, L-Tyrosine in a morning amino and L-Tryptophan before bed, at least until you see how they work with your biochemistry. Would be interested to know if the combo works for anyone else. (I also take L-Theanine occasionally for mood).

    I figured it was a weird quirk with my biology I had passed on because my family tend to be severe isolationists and back hill country types riddled with anxiety. I think possibly the skewed aminos favored being isolated in the wilderness for days on end with also providing severe discomfort in social / crowded or loud situations. The old thought in other words that sometimes a deficit is actually there to benefit a person -- at least in the right context.

    The other gift my family gave me was terrible blood sugar control. I have severe hypoglycemia and so does my son and I suspect the gene that is messing with my amino acids will eventually cause me to be diabetic like everyone else before me. I'm going to experiment with aminos and getting that under control.

    I probably favor L-Tyrosine personally because it works so well for me against anxiety and allows me to talk to people and go to the store. I was on a very high dose of clonezepam for 5 years to try to get my anxiety down but it doesn't work nearly as well for me as L-Tyrosine and clonezepam makes the brain unable to focus (so it can't harp at you anxiously about stuff) and it makes it hard to form new memories (I have five very fuzzy years) -- so L-Tyrosine is much better for me personally and I have been working hard to rehab my brain so I can focus again and remember stuff. As an artist being unable to focus and remember meant five years of not doing art.

    The cocktail of drugs I used to be on was substantial and my p-doc warned me that without them I would decline and be begging for my drugs back within a few months. Three years later - no depression, no anxiety. Now if I could just get rid of the fatigue.... although, I would still be on the meds without the fatigue. The other doctors I saw said I was over medicated and the medication was causing the issues, so that's why I went off all of them and endured a year of heavy duty withdrawal, but unfortunately it did not fix the fatigue or impact it much.

    TMI -- sorry -- anyway, I hope anyone trying it for depression has good results. Happy Holidays to all too!
     
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  17. drewf2

    drewf2

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    i'd definitely agree about drugs, I'd prefer to fight depression as naturally as possible. I have been taking CBD oil and that works quite well also. I'll be trying the L-tryptophan at night soon so I will see what effect it has. It is quite hard to distinguish what is causing me more fatigue, depression or CFS.

    I would be interested to know with people's PEM how long after exertion does it hit? I see with most people it is instant and they feel fatigued and other symptoms within hours but I am wondering if it could take a day, days or even a week before the PEM effects kick in, this might explain my situation as I can go to the gym and do a full work out, I don't feel great from doing it but I definitely dont get PEM directly afterwards, I get tired but I don't think it would be any more than the average person after a workout. A day or days later though I may start feeling very sick, malaise and strong brain fatigue that keeps me in bed. physically i feel I can do anything as my muscles dont feel overly weak and I have stamina but I know if i push too hard ill get sick.
     
  18. Runner5

    Runner5 Senior Member

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    I live in Oregon so CBD oil is available down the road and quite easy to obtain but I haven't tried it yet. I have been looking into it though, but I have such an addictive personality sometimes, was a little worried I might like it a little too much. (My fav' show is Trailer Park Boys, haha)

    In my mind anyway - which is usually partially cloudy to full downpour raining, that is to say not very clear on any day of the week - in my mind PEM is connected to delayed onset muscle soreness and the lactic acid build up / response because the muscles are not using glycogen effectively and not burning fat effectively and the worst symptoms are from a break down in muscle to burn amino acids as fuel (protein) instead of fat / carb which muscle naturally should, protein being last resort fuel for the human body. So from that angle at least PEM and DOMS should occur within an hour or so of working out, although as the body attempts to repair it might trigger later? But if it did I would also think you would find muscle loss. My expertise however is purely arm chair in nature, digging into Krebs cycle and how muscle tissue works really requires advanced bio-chemistry degrees.

    If you don't have PEM right after you workout could be a few things, you might have a good fueling and refueling strategy. Curious as to your routine? How often you work out and what it consist of? (That is just me being a geek and nosy though)

    I want to return to working out so I've been working on my fuel strategies and recovery (Vega Pre-Workout Drink, Vega After Workout Drink, Protein Shake). That's kinda controversial in sport and there is a lot of pressure not to do anything to fuel and refuel these days, which is a bit crazy in my opinion. I've heard so often though, "workout while fasting" and "make sure you wait an hour or two afterward to eat anything" ("don't undo your hard work!") -- which doesn't make sense to me from a building muscle standpoint, and definitely not a good idea with CFS. But that is the current fad / trend, but that's not how I want to train, I don't think it's going to work for me.

    I suspect my own mental fatigue is caused by my brain not getting the glycogen and fuel it requires and maybe not the amino acids to repair and rebuild. Maybe a build up of glutamate, I have a lot of brain noise that makes focus difficult.

    I've had some luck with intermittent fasting which raises HGH and lowers insulin and helps the brain get glycogen and have a longer repair cycle. (Also I think I'm just allergic to a lot of foods and it finally gives my body a break from that).

    Maybe we need a dedicated sport and exercise thread. I could talk about this stuff non-stop all day, haha.

    Is your depression worse in the winter? Depression absolutely sucks, it's like being tortured. I haven't had a bought of it in a few years now but I think I always have a little fear in me that it will come back and move in like a stifling blanket over my brain and take away all joy in life.

    Today is a bad brain day for me - hope this sort of makes sense, kinda feel like I'm typing gibber gabber.

    I hope the holidays went okay for you and you have some mad awesome 2018 goals my friends. :) ((hugs))
     
  19. Stretched

    Stretched Senior Member

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    In addition to rest I find home made chicken soup tp be ameliorative and helpful in getting back to baseline. May sound whacky but there’s
    something about it that turns that queasy gut feeling around. Also, it tastes good.:)
     
    Last edited: Dec 26, 2017
  20. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    I hadn't had the bad poisoned feeling with brain fog after exercise for years, though it was one of my 1st symptoms 10 years ago. But then in Feb 2018, I went through a ~5 week period of regular increased overall symptoms (especially crippling joint problems) which were not necessarily due to any exercise at all. In retrospect, my best guess is that I had a long lasting though mild virus cold which caused overall immune activation. I had, as usual, obsessively tried to associate what I was eating or doing with my symptoms, but couldn't identify a solid connection - so the virus is a Dx of exclusion for me.

    Now here's the kicker, which was alarming to me: the "poisoned feeling with brain fog after exercise" returned. It'd last 1 or 2 days. My approach to counter that was to intensify what I'd been doing peri-workout for years: anti-acid, anti-inflammatory and anti-mast-cell. Also anti-microbial, in case my PWO nutrition was causing some bad gut microbe(s) to multiply or in case the exercise caused leaky gut via breakdown of intestinal heat-shock proteins.

    Things got better over time and now the PWO poisonedness is almost completely gone again. I can do high intensity weightlifting, with large muscle groups, with no resulting problem. I went on a 15 mile bike ride through hills just last week, and was only a little bad the next afternoon.

    I realize I am probably different than most, but not all, and so I haven't used the term "PEM" in my reply. (I might be wrong but I don't even see that it's the same as used by everybody anyway, especially on speed of onset.) At my worst 10 years ago, I would have to sit my way down the stairs one stair at a time, then sometime later go back up on hands and feet and collapse on the bed - and stay there over days - while unable to think very clearly, also.

    I haven't posted in years, but I happened to look in on the forums and saw your post about a virus and PWO malaise, so I am posting this. I do not think that a virus is still a problem for me after my initial ~5 week period, though I do think the presumed virus re-started a bad self-sustaining cycle in my mast cells. The more I've reflected over the years, the more it seems that the abherrant MCs are at the heart of most of my remaining health problems.

    Good luck to you.

    P.S. I'd found that during a malaise period, there comes a time when I instinctively force myself to get up and do something, even a 5-10 minute walk. That seems to end the malaise period almost immediately, certainly faster than would have occurred on its own. Not too soon, not too late, and not too much, Goldilocks style. My guess is that the activity flushes bad metabolites out of the muscle.

    Also, being completely immobile during the worst of the malaise, like when you know you could move but you really really don't want to and seem mentally paralyzed? That makes things get worse for me. I can feel the badness growing, so in that period I at least toss and turn.
     

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