Is there a subset that doesn't crash?

Discussion in 'General' started by Folk, Feb 12, 2016.

  1. Folk

    Folk Well-Known Member

    So the thing is:
    I've never really "crashed". Not like most stories at least.
    For 8 years all I had was pain. Starting from the lower back, and then gradually spreading, develloping allodynia where any touch of clothes or sheets would hurt. And finally almost the entire body hurting (never had much headaches though). My Dgx was Fibro.

    For years I took no medicine, but when I decided to exercise as advised by doctors I had my first "crash" my legs started to hurt so so much. I started taking Cymbalta and drinking green smoothies. Cymbalta dindn't do much for the pain, but the smoothies were like a miracle (50% better in one week). Then I got of Cymbalta and became vegetarian. One month after that I started having stomach pains and then everything went downhill... I got generally worse and worse in the next months to the point of becoming homebound with all the symptoms (fatigue, dizziness, headaches, A LOT more pain, GI problems, photophobia etc etc).

    I got back at eating meat and started to pace myself, started Lyrica and started to get slowly better. I went to Dr. Kaufman in July, where I was diagnosed with CFS/ME, SIBO and MCAS for the first time (I'm from Brazil, none of these exists here). He was pretty secure of his diagnostic.

    It's now one year after the homebound time and I'm much much better now, but still not close to the time where pain was my only problem.

    The thing is I don't crash not even when I overdo it. I went on a 10 hour car trip to a three day event with lots of bands. My friends stayed there camping, I went to a hotel. But when I got there I knew I was in trouble. The place was HUGE. Anything you wanted to do you'd had to walk a lot and in highlands with ups and downs all the time. I did it, the way I could. I had to take tramadol everyday and I used to carry a chair with me so I could walk to the place and then sit otherwise my legs couldn't handle.

    It was pretty exaustive. But we got back and I even drove 2 or three hours of the trip back. I'm like always. No remnants of the trip, no PEM.
    I did feel pretty tired on the festival and with lots of pains, and I knew I was crossing my limits everyday. But I could do it and nothing close to a crash.

    So... That would raise a lot of questions.
    Is it just Fibro and not ME/CFS since pain is the main problem (even though Fibro patients crash too)?
    OR is there subset that doesn't crash?
     
  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Very interesting. Hey if Kaufman diagnosed you with ME/CFS I think you have ME/CFS - with a more Fibro tinge. Or you have Fibro with an ME/CFS tinge. I would bank on the experts. Kaufman is a smart dude; this is all he does - day in and day out - if he says you have ME/CFS I think you have ME/cFS - just a bit different version.

    A couple of days ago I got lost in desert. I had to walk maybe a hour before I found the car. I felt fine! The next day I started crashing which for me means lots of muscle pain, difficulty thinking and concentrating, lots of bad body sensations. and fatigue. Just miserable. The next day was the same. Today I started to feel better.

    I know someone with ME/CFS who doesn't crash after exercise. For him it's more problems with stimulation I think. He doesn't fit the ME/CFS mold in that way either but he fits it in other ways.

    I just think there are a lot variations on the theme. You seem to get worse with exercise but recover more quickly. You don't have the big post-exertional component but you're still effected by exercise. Whatever gets tripped in people with big PEM doesn't get tripped with you; it stops more quickly. You may actually be more like MS patients; they experience a lot fatigue, get tripped up by exercise but recover more quicklly.

    The core of this illness in the end, though, really, I think is SEID - exertion intolerance.....and it shows up in different ways.
     
    voner and IrisRV like this.
  3. Who Me?

    Who Me? Well-Known Member

    I worry that at some point this will catch up with you. ME/CFS is sneaky and when you least expect it, BAM!!

    I never heard of particular subset that is known for not crashing, just some people do and some don't.

    But seriously. don't push it.
     
    Veet likes this.
  4. Folk

    Folk Well-Known Member

    I certainly won't. I'm pacing a lot.

    The thing is I've never crashed, never. And back then, when I had "just FMS" I used to push it hard. Nights without sleeping, drinking and partying. The day afeter I would wake up better than my friends who had no chronic condition :eek:

    But I was overall slowly getting worse. I'm thankful I'm slowly getting better now. It's been a rough year but I'm a LOT better than I was a year ago
     
    Who Me? likes this.
  5. Who Me?

    Who Me? Well-Known Member

    Glad you're better!
     
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Glad you don't have to endure those &^*^ing crashes. What you have is more than enough (lol) :wacky:
     
    Folk likes this.
  7. Remy

    Remy Administrator

    I don't really get PEM either. I joke and say I'm just "M'd" all the time...but it is not significantly worse after exertion for me. Also, I can exercise a lot more than most people. I don't really exercise though; I just try to move as much as possible. The difference is that I usually feel better after I go for a walk, not worse. If I feel worse, I stop.

    I'm more likely to get a crash from extreme emotional stress rather than physical ones.

    So do I not have MECFS? Who knows? I've been diagnosed by some top specialists so until there is a better name, this is the one I've got.
     
    IrisRV likes this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The non PEM subset is out! :)...:playful:

    I hope it feels good to be out :smuggrin:

    I imagine that there's quite a few people out there. If you've been diagnosed with ME/CFS by a professional you de facto have it!

    There's also the oh so intriguing relapsing- remitting subset; they get healthy - sometimes for no reason they can see - and then get sick again - sometimes for no reason they get sick again. That's so different from my monotonous 30 year trek through ME/CFS.

    I imagine there are MANY subsets.
     
    IrisRV likes this.
  9. IrisRV

    IrisRV Well-Known Member

    That's what I'm betting to. Probably even a number of completely different illnesses all under the current heading simply because they have some similarities and don't fit anywhere else.

    I'm the odd ball in this thread (of course, because this thread about NOT crashing :rolleyes:) My PEM is clear and distinctive. Before my diagnosis while I was still trying to delude myself I was fine, just a little deconditioned, my best friend caught onto the PEM. "Have you every noticed how when we do something, exactly 4 days later you're really sick?" Uh no, but now that you mention it....
     
  10. Leila Gary

    Leila Gary Member

    I am really 'late to this party' (thread) but I don't crash after physical exertion...I crash with emotional stress. I have doubted that I have CFS/ME many times. A long time ago I saw a PA rather than my regular doctor (2004 or 2005ish...back then I was writing down all the symptoms I was experiencing to give to the doctor to put in my record) and she said based on my symptoms it sounded to her like I had MS. She said I should discuss this with my doctor (My doctor didn't believe in CFS or FM). My doc said I didn't have MS and that there was no test to check for it. He never read my symptoms (throughout the course of a year going sporadically with writing down symptoms for my records). My main point is: I am functional with many symptoms of CFS/ME/FM but I crash with emotional stress and trauma. I was diagnosed in 2003 with Fibromyalgia and in 2007 with both but primarily CFS (this was by a doctor who worked at the Chronic Fatigue and Fibromyalgia Center?) I do not have the energy I once had plus I have put on 40lbs which is exacerbating my symptoms and causing new symptoms/problems. I rarely go to doctor for my symptoms because I go to a clinic that changes doctors all the time (low income clinic). I got sent to a Rheumatologist who checked some of my joints and snottily said to my face "If you just want pain medication or marijuana, go get it across the border (to Washington State...I live in Oregon but got all my CFS/ME/FM diagnoses in Washington) where it is legal." I felt 2" tall and have refused to mention it to the new doctor I got a year or two ago.
     
  11. Seven

    Seven Well-Known Member

    In my experience, every user I met with no PEM eventually had ended up diagnosed having a genetic disease and most diagnosed with Lyme. I am not saying you do, but is funny that every time at the end is what happens. I will keep note of you and see if this will happen for you too.

    Also they don't tend to have low NKs would be interested to know your NK activity levels.
     
    Empty likes this.
  12. Folk

    Folk Well-Known Member

    I have low NK's.
    What you mean by ended up being diagnosed with Lyme?
    By a Lyme specialist probably?
    And if you go to a CFS specialist you'll get your CFS diganostic back...

    There's no such thing as (late) Lyme diagnostic at this point in time.
     
  13. EYAKLLE

    EYAKLLE Guest

    Ramsey talked about fluctuating symptoms and variation of severity in the same person
    it was a key criteria

    also those who are 80% and over have more resistance luckily ?
     
    Empty likes this.
  14. EYAKLLE

    EYAKLLE Guest

    sounds like you didnt get too many clear answers yet.....
    do you know what true ME is as defined by Ramsey as opposed to the cdc cfs stuff?
    it s important for you and those with true ME to be studied differently. you say yourself you doubt you have it... but getting overly easily diagnosed with it is not good. perhaps u can go see a true ME expert?
     
  15. Empty

    Empty Well-Known Member

    I have fluctuating symptoms and it makes it hard. Can I ask what that 80% is referring to?
     
  16. EYAKLLE

    EYAKLLE Guest

    A disability/functioning scale.
    80% healthy
     
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