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"ME" - Symptoms wax and wane ?

Discussion in 'General Symptoms' started by xchocoholic, Jul 24, 2011.

  1. xchocoholic

    xchocoholic Senior Member

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    Hi Listmates,

    I saw mention of this on the thread concerning the new diagnostic criteria for ME. I didn't want to hijack that thread since it's already getting long. Waxing and waning was being discussed on page 10 ..

    I've been totally disabled with ME/CFS/FM since 1990 and my symptoms have never waxed and waned as far as I can remember so I wonder if this is another clue to ME ?

    Or is this another subgroup ? Or is this a sign of severity ? I appear to fit the new criteria exactly ... Started with virus, UTIs, URIs, etc etc ...

    Oh but I stopped feeling like I had the flu 24/7 after I'd been sick about 7 years. And I can push myself without getting a URI whereas I used to get them everytime if I pushed myself.. I just get to where I can't stand up or move anymore .. lol ... These symptoms never came back so they didn't wax and wane.

    I'll get all of my food intolerance symptoms (insomnia, myoclonus, twitching, IBS, etc etc) back if I eat foods that I'm intolerant or ingest chemicals. (And yes, I hate all this dieting crap too !! :rolleyes:) .

    Really painful sore throats appear to come out of nowhere but a constant throat aggitation and post nasal drip has always been noted on physical exam. I always have a low bp, low body temp and blood in my urine too. OI (orthostatic intolerance) is there every single day and PEM post exertion is a given. Especially PEM brain ..

    I had ataxia when I tried to walk everyday for 16 1/2 years. But that eent away in 2006 probably due to the gluten free diet.

    So what kind of symptoms wax and wane ? None of my neurological symptoms did ... Headaches were constsnt in the beginning. I took diamox for years. But even after the nonstop headaches, I over did it I was guaranteed to get a killer headache. Hmmm.

    Also, I have accumulated additional diagnosises over the years too. Recently added major seizure disorder (tonic clonic ?), Paget's and lung scarring ... is this "ME" ? Do we continually get sicker ? I don't feel nearly as sick as I did all those years prior to going on this diet tho.

    fwIW. I have freinds who don't have ME who are seeing an increase in their health issues too. All of us are over 50 ...

    Any ideas ? I wonder what these doctors are seeing ...

    tc ... x
  2. xchocoholic

    xchocoholic Senior Member

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    Hi again ...

    I didn't get any responses here and hope I didn't offend anyone or make them feel isolated. If so I apologize. I was the undiagnosed patient for 2 years so I understand the frustration.

    However, now that I see how ME/CFS is being diagnosed, getting to the root of this and or sorting out the symptoms is a priority for me.

    As I see it now, ME is just a group of symptoms. All defintions of ME are just that. And the only reason they've been cojoined is to make the doctors job easier. Not looking for causes of these symptoms has held us back for decades.

    FWIW. I'm not trying to draw attention to my level of disablity or anyone else's. I just want to further define why we have symptoms one day and not another or certain times of the day. I can't understand how ME symptoms would wax and wane. We would never say that about the flu or food poisoning !! Maybe defining what's causing this would help us get to the root of ME.

    I've been watching for symptoms that waxed or waned and found that for the most part, my symptoms are always there but if I over exert myself they become more severe. But over the last 6 years, I've identified various foods and chemicals that are guaranteed to cause certain symptoms.

    Also, I got my ataxia back when I tried using Benadryl or Klonopin with sorbitol. Not sure if regular Klonopin would've done that or not. That's it though. So far now ataxia since 9/6 and it was there every single day everytime I walked.

    PEM, or PENE now, means a day or two of rest unless I've been pushing for days, then it's a day of being too sleepy to function and taking multiple naps. On a bad PEM day, I'm lucky to remember my address ... lol .. I don't get worsening throat pain, increased myoclonus, ataxia, etc ... it's all about my body being too weak to stay up and therefore making me rest. I don't have any "flulike" symptoms either unless I try to push myself on a PEM day.

    It's our immune systems that are reacting to an invader such as a food intolerance, virus, bacteria, etc not the virus, etc causing these symptoms ... So fixing our immune systems need to be a priority which the majority of which is in the gut.

    My most recent theory on how I got ME is that a virus came along and wiped out my villi causing celiac disease. The NIH says that celiac disease can be caused by a virus but I never thought to google which one or ones. They also state that NSAIDS can also cause celiac disease.

    Damaged villi allowed bad bacteria and fungus to grow out of control and create an inability to absorb nutrients from food. I carry the DQ2 gene and neurological problems from gluten are EXTREMELY common in DQ2s. My ataxia went away after 1 year gluten free so the connection for me is apparent .. That and those darn gluten antibodies ...

    Hmm, most of us are gluten intolerant ... chicken or egg ? lol ...

    tc ... x
  3. madietodd

    madietodd Senior Member

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    Hi, xchoc! I didn't answer because my symptoms are pretty stable too. Sometimes I'll have a general slide - long and slow - and then I have to quick get serious about whatever led to the slide (usually adding in a bit of exercise, or messing with my food choices). But so far I can pull myself back up to my normal.

    The only change is that over the (25) years, it takes more to get back to 'normal.' This time I've gone on the methylation protocol and stopped taxing my adrenals AT ALL. This means no decaf tea and coffee, and very rarely any sugars or chocolate. My life is already very low stress.

    Did you do a gene test? How does that work, and how useful is the information?

    Madie
  4. justy

    justy Senior Member

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    Hi Xchoc, just saw your thread today. I once saw a letter to an M.E org saying that if symptoms where continuous then it was not M.E as it is a fluctuating illness that waxes and wanes. I immediately thought this must meen i didnt have M.E (i wasnt officially diagnosesd at the time) In reality it meant i was in a certain phase of damage/damaging my body which meant continuous symptoms with no re;lief whatsoever. 2 years later and i now can have the odd almost symptom free day so long aas i stay within my envelope for many concurrent days. My M.E doctor says this means i am in a healing phase.
    I have had M.E for 17 years although i was only finally diagnosed 18 months ago. During this time i have ranged from mildly affected to severely affected into remmission and back to severe, now back to recovering and moderte with the odd mild day again.
    Some symptoms flare up on a daily basis if i push myself or overexert (this can sometimes be by only a tiny amount) so i feel tht my underlying disease is still there in a way.

    I agree that understanding the waxing and waning and even full remmisssions that some of us have had could provide a key to solving the puzzle. Dr Myhills work on Mitochondrial dysfunction go some way to explianing why symptoms would wax and wane and perhaps even how it is possible to get a remission as i did to near normal for years, and yet for me and others with long remmissions the illness has returmned -for me triggered by measles and pneumonia which would suggest to me an underlying immune dysfunction. I am also interested in the fact that those of us who have been fortunate enough to have remmisssions report an inability to increase stamina or reach fitness levels of healthy people even if we are able to exercise.
    Justy.x
  5. xchocoholic

    xchocoholic Senior Member

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    Hi Madie

    ditto on what causes symptoms to flare. At least from what I've identified so far. The new info on bacteria and germs has me intrigued .. as well as the reaction I'm seeing from eliminating ALL caffeine ..

    25 years ... wow ... I hit the 21 year mark last January.

    My life is low stress now too. In fact, I moved to the beach in June and am using it to help me unwind twice a day. I call it "beach therapy" ... lol ...

    My GI ordered the gene test for me cause I wasn't tested for celiac prior to going GF. He found damage on my Endoscopy, 17 months post GF, but we wanted to be sure I really needed to avoid gluten. I found it helpful knowing that I have the gene because I can tell my family they may have it too and it helped reinforce my need to avoid gluten.

    Of course now I know that you don't have to have the DQ2 gene to have neuro problems from gluten but the data to support that isn't all there yet. If interested you can google "theglutenfile" for more on this ... This file contains info that most docs don't know yet.

    gotta run .. tc ... x
  6. xchocoholic

    xchocoholic Senior Member

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    http://www.fightingfatigue.org/?p=8314

  7. taniaaust1

    taniaaust1 Senior Member

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    For myself its nearly all my symptoms 80-90% of them wax and wane.

    If someone isnt quite living within the limits they probably should be, they can keep themselves in permanent flare and hence then have consistant symptoms.

    There is also like a kind of "stable" state which is reached when one is balancing their life out right for the degree of their illness... you get to a point in which the symptoms you have, are like just sitting there and never really change much The symptoms I have which never go away and always are sitting there (thou in my case they do get worst too if i push) are things like my memory issues, BP dysregulation, low cortisol, the IBS.

    Those are issues I always have which dont seem to change as they always are with me but my others all really wax and wane. eg I get neurological stuff start happening if I do too much so go from a state of where I dont get that symptom to the state where I do. I have some days Im far sicker then other days.. the whole illness changes levels. (waxs and wanes) eg some days I can have tremors and spasms or headaches (due the exertional stuff otherwise its stable).

    It has been said by some ME/CFS specialists that it cant be ME/CFS if it isnt waxing and waning (so take care something else hasnt been missed) .

    The fact that symptoms come in or worsen after exertion... may also be called waxing and waning. Symptoms that come and go or shift and change.. worsen and improve. Symptoms that arent stable. I wonder some are precieving the defination of what waxing and waning is differently to others.

    That isnt consistant symptom then, its shifting (waxing and waning)
  8. alice1

    alice1 Senior Member

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    I've had CEBV for 24 years now.I have waxed and waned during those years .What was surprising to me was there never seemed to be a consistant reason.I've developed nasty allergies and had to revert to shots.Nothing else was working from diet,over the counter meds,steriod sprays,you name it I tried it.The mites are my main problem because they love my eyes and make it impossible to do anything especially on damp days also when I researched the buggars it said they can make you feel quite bad..and they did.I started shots and they were working .fantastic!!I also have other allergies
    so I decided to do shots for them.HUGE mistake.Put me on the sofa for 4 days.It's a balancing act for my immune system.It topples when it's taxed.Sometimes knowing what will contribute to a crash is trial and error for me.My main symptoms are fatigue and brain fog.So it's back to shots for dust mites only.Also being gluten free has made a difference.
  9. Sing

    Sing Senior Member

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    I feel I have the same illness, or condition, every day of my life. Basically. What can give the appearance of waxing and waning are things like PEM, chemical exposure, etc.If I live within my energy envelope and follow all the restrictions and prescriptions for my condition, I can temporarily appear normal--say, sitting down and chatting with someone for a brief visit. But, put me to a test, or make me do any of a number of normal things, and you will see me get worse afterwards. I KNOW I always have the same condition, that the collar and leash or dog chain, so to speak, are always there. But if I just laze around the back yard and never go father than the end of my chain, you might think I was fine and that my symptoms were remitting.

    It may be different for others of you who have real remissions, and can all of a sudden do stuff you never had been able to. I frankly question whether that is ME. So I am on the other side of the general opinion. But maybe I shouldn't use my experience as setting the standard, but simply say, this is what it is.

    Maybe there are different subgroups. There are definitely differences in how "waxing and waning" might be defined.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Bioidentical hormone correctly tested and balanced help in so many ways including sleep!

    Odd to add this, after the first thing. You have to have a great doctor that understands it all. I am tested twice a year and have had great help with all hormones as well as all other things that supplements help.
  11. alice1

    alice1 Senior Member

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    Sing I wanted you to know that even though I have better days I haven't had a normal day in 24 years.Sometimes I can remember what that feels like but it's fleeting.
    My fatigue and brain fog are in degrees..but always there.
    Sorry if I made you feel like the chain was yours only..it's not.
    xchocoholic where's your beach?a very wise move.
  12. ramakentesh

    ramakentesh Senior Member

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    My symptoms relapse and then remit. Very autoimmuney and I have a comorbid autoimmune illness that developed at the same time as POTS.

    problem with B12 is that its a competitive scavenger of Nitric oxide - and some POTSies have too little NO rather than the opposite.

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