The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Plase help me to understand

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

  1. notmyself

    notmyself Senior Member

    Messages:
    246
    Likes:
    304
    Hi everyone,i am new here..I really need some answers because i really don't know what is happening with me.

    in the last 6-7 months i am felling tired everyday..i have trouble sleeping aswell with periods of insomnia or waking up after few hours.Just like many of you here i make many tests, complete blood count( absolutelly all in the normal range) tyroid -no problem,adrenal-no problem..Brain Mri -just a small inflamation of the sinus ,nothing bad with the brain itself..Here in my country the disease CFS doesent exist..It exist only ME wich is a inflamation of the encephalus and is detectable with a MRI test..is also very incapacitating and is not the case with me.I really need to know what is my problem and i have no help from the doctors ,because they all send me to a psichyatrist ..my family aswell think that is all in my head..I don't know what to belive..The problem is i am not sure i have cfs either..

    I have big respect and empathy for all of you here and i know my health problems are not so bad as many of you but i hope you can help get some answers..here are my symptoms and what i am able to do..I need to know if you think i have CFS or not..


    Cfs related symtoms
    Trouble sleeping..but tired even when i get a good sleep
    Always very tired,,but never so tired to not be able to go out of bed or to walk
    Muscle pain ..but not very severe
    Moderate Neck Pain

    And the things that make me belive i don't have CFS

    I am able to go to the gym 5 days a week..training for more that one hour with heavy weights..last week i run 10 km on the treadmill..except from the normal daily tiredness and then msucle soreness from the exercise i dont get any worsening of the symtoms..
    Never have swolen lymph nodes ..i didint check yet but i think i never did had monoucleosis
    Don t have sore throat
    Don t have headeaches,,only very mild ocassionally..something that everyone get from time to time
    i don t have orthostatic intolerance neither alcohol intolerance..i can drink 5 beers witthou even getting drunk
    my blood pressure is fine also


    Do you think this fatigue is just from my head?? Would i will be able to exercise at so high intensity while having CFS..?? I hope i didint offend anyone ..and i f you ahve time help my find some answers ..all the best for all!!
     
    ScottTriGuy and justy like this.
  2. Cheesus

    Cheesus Senior Member

    Messages:
    1,145
    Likes:
    4,718
    UK
    Hi

    I am really sorry to hear about the health problems you have been having. I can appreciate it must be very difficult to deal with and quite frightening.

    Your ability to attend the gym 5 days a week would generally mean that you do not have ME/CFS.

    Unfortunately it i going to be very difficult for anyone here to say what is wrong with you. I understand your difficulty with doctors - I experienced a prolonged period of ill health before I got really sick, and no one ever paid me any attention. They just tried to give me anti-depressants (I wasn't depressed).

    There might be some things you can do to help yourself feel better. What is your diet like? You would be surprised how much a change in your diet can affect how you feel.
     
  3. notmyself

    notmyself Senior Member

    Messages:
    246
    Likes:
    304
    Hi..my diet used to be very bad in the time that i was working abroad( i lived and work in uk for 2 years)..basicly i was eating only processed food because i have no clue how to cook ..But i come back home 3 month ago ..and i eat very healthy and fresh food..unfortunatelly my symptoms don't improve..
     
  4. carer51

    carer51 carer/partner of moderate/severe sufferer

    Messages:
    65
    Likes:
    193
    UK
    Hi notmyself,

    Is it possible that you are overtraining? In my opinion everybody has different tolerances to how much exercise they can do without wearing themselves out, and it can change throughout your life - there was a period where I was training very hard and my fatigue was very bad. I do think that resting in between exercise and weight training is just as important if not more so than the training itself.

    Having said that, I do think that my antidepressants contributed to the fatigue at that time as well.
    Do you or could you have any issues with anxiety? I only ask because my health problem is with anxiety and it can be very exhausting.

    Very much hope you feel better soon or can find some answers!

    Sarah x
     
    Zombie_Lurker, Dechi and notmyself like this.
  5. notmyself

    notmyself Senior Member

    Messages:
    246
    Likes:
    304
    hi sarah
    Yes i have some issues with anxiety,especially health anxiety and i worry a lot.Do you think is possible anxiety to manifest mainly as just being very tired ?? without the more classic symptoms like panic attacks,palpitations etc ??
    I was thinking of overtraining but is not the case. i have a 2 month break from exercise when i actually quit my job aswell because of this tiredness..You mention antidepressants ,they definatelly can cause fatigue..Is your anxiety getting better? I hope you feel much better aswell !!
     
  6. xrayspex

    xrayspex Senior Member

    Messages:
    966
    Likes:
    232
    u.s.a.
    I was probably overtraining before I got CFS, I am sure I was, but I liked it and still miss it 25 yrs later, and i didnt know that my diet was wrong then too. You could have an autoimmune issue emerging like Sjogrens, a friend of mine has RA and can do all kinds of things I can't but has overlap with some of same issues.
     
  7. notmyself

    notmyself Senior Member

    Messages:
    246
    Likes:
    304
    Hi, so you think overtraining can trigger cfs?
     
  8. ash0787

    ash0787 Senior Member

    Messages:
    286
    Likes:
    568
    I'm not sure you have CFS, right before I got it I could cycle 60 miles, then 2 monthes later I could not even cycle 2 miles without feeling quite ill afterwards, it stops you exercising except walking and occasional lifting things up.
     
    notmyself likes this.
  9. xrayspex

    xrayspex Senior Member

    Messages:
    966
    Likes:
    232
    u.s.a.
    There were a lot of risk factors and possible events/situations that in retrospect could tie into triggering my CFS......I don't think working out alone caused it. But its interesting I just found an old journal from the year before I got hosed where I kept track of my workouts and I was running 5 miles a day frequently followed by lifting weights at the healthclub and then going out dancing.....(that's when New Order was often on the DJs list so wow its been a long time) and my main staples were often popcorn and coffee.....now I haven't been able to consume either of those things since I have had CFS for over 25 years.

    There were a lot of things that helped set the stage, genetically and environmentally, but 3 things really put me over the edge was (a)taking erythomyocin and prozac and zantac---I didn't know my body couldn't break meds down properly and hadn't taken any regular meds before that summer where it all went south; I think that is what led to getting a gallstone along with my diet and then the (b) trauma of having to get surgery for that was really rough on me, I didn't see that coming, was niave, figured if doctor said to take or do something it was safe; and then afterwards (c) I went to a chirorpractor because a bad headache was part of the aftermath of surgery and they messed up my neck because I had undiagnosed stenosis etc and maybe there was inflammation like in M.E. that made me more sensitive too...........so chronic pain on top of chronic fatigue since then......before that I thought I could bounce back from anything was pretty tough although I always was sort of sensitive to chemicals, had decided not to drink at young age because no tolerance.

    gall bladder problems aren't unusual in CFS so that could have happened because of some predisposition or virus I was exposed to. Since my teens I had something that looked like mono recur several times into my early 20s then went away. Then a couple years before I got CFS I remember after taking plane to Nevada I got a flu/cold/virus when I got off but it sort of cleared up and came back where I had first experience of stinging spinal pain with it but then went away and I was fine until that surgery couple years later, but when I read in CFS book "Oslers Web" that around that time in mid late 80s in that western part of country that was a high risk area and being on planes could be an incubator to catch it....I do remember sitting on the plane and feeling like I got hit with a bug.....you know those rare times where you know the instant you caught something.

    I also swam around that time before I started developing all those problems, the summer I took those meds, in a lake that I didnt know may have some issues.

    Sometimes its just a perfect storm....confluence of factors I think
     
    Last edited: Jan 27, 2017
  10. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,089
    Likes:
    3,580
    Bristol
    @notmyself have you looked up fibromyalgia? That might be a possibility. Or sleep disorders like sleep apnea?

    If you do have ME/CFS it sounds very mild, although I recognise that it is troubling if you're used to full health. Do you have a delayed reaction to activity? It doesn't sound like you do if you can train consecutive days. I've previously got to 95% recovered from ME and my activity was fairly normal but I did need to keep an eye on pacing my activity. Although I could walk miles without repercussions, the day after I'd plan quite a leisurely day (I wouldn't go on a walking holiday with long walks consecutive days).

    If I was in your situation (and I'm just a patient not a medic) Id ease off from the training with days of rest, buy a decent multivitamin, eat top quality food, and in the time I'm now not training I'd do something new which is very relaxing. If this didn't clear up the problem in a matter of weeks I'd put effort into getting referrals to specialist doctors and keep a diary of activity, symptoms and food.
     
    notmyself likes this.
  11. lnester7

    lnester7 Seven

    Messages:
    2,277
    Likes:
    3,186
    USA
    I disagree w some, since I had slow onset. I didn't have any of this symptoms till like year 5.
    One I assume that when u say all tests are ok that includes Vit D (2 and 3) and B12 are all ok.
    The first advice I would give you is to have a sleep study. Start by things that can be addressed.
    There are 2 types of sleep meds, inducers and some to stay sleep (stage 4 sleep). Since you have problem staying sleep make sure they give you a stage 4 inducer not a sleep initiation aid.
    Another great thing u can do, stop exercising for 2 weeks. See if you improve, 2 weeks will not kill you and will give you the cfs answer really quick. Then restart slowly and increase slowly every 2 weeks until you make sure is not the level of exercise.

    I have cfs and by now all I can handle is 1h of recumbent bike. Mine is "Mild" I put quotation because even mild is very disabling. So I don't know who the hell invented the mild term. This crap will floor you no matter what.
     
    Zombie_Lurker likes this.
  12. Dechi

    Dechi Senior Member

    Messages:
    870
    Likes:
    1,601
    I have been diagnosed with ME. Not with an MRI, which only showed sphenoidal sinusitis, but with a SPECT scan that showed anomalies in the bloodflow to the brain (hypo and hyperperfusion).

    My first symptomes were in the legs, I started feeling weakness when climbing stairs. I had to stop biking because I wasn't able to perform and got frustrated. But I kept training 4-5 times a week, weighligting. And working full time in a very stressful job. Until I had a second viral infection, less than a year later. Then all startled to collapse and within 3 months I couldn' t train without being ill afterwards and could barely do my work. 3 months later I was on disability and still am more than 1 1/2 year later.

    I think you might have ME, or not. My first symptom was the weakness in the legs due to acid lactic build up. Now I have problems with lactic acid buildup 24/7. Since you lift weights, you must know what lactic acid is and what it feels like. It's a very strong characteristic of ME. Do you feel this build up sometimes, for no apparent reason, like climbing up a few stairs ?
     
    Jenny TipsforME likes this.
  13. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,213
    Cincinnati, OH, USA
    My suggestion would be to do a sleep study first.

    Then if that doesn't show anything, consider adrenal fatigue. The best test is an 24 hour cortisol saliva test which is available from online direct labs. Your regular doctor won't likely know about this kind of test.

    My earliest symptom of ME/CFS was waking up at 5am and not being able to get back to sleep, and in general feeling tired and stressed. Eventually I had to cut back on my workouts, then eventually quit working out as I got sicker.

    The 5am wakeup and not dealing with stress well are symptoms of adrenal fatigue.
     
  14. notmyself

    notmyself Senior Member

    Messages:
    246
    Likes:
    304
    I make some more research..and yes this seem much more possible i do have a history of stress and sleep problems..Adrenal fatigue might actually be the problem..i also have this feeling that my fatigue is more mental than psihical...that explain also my ability to train in the gym..i go there completely tired but after i start working out a bit i feel more energy an power ..after i leave i'm tired again.
    Adrenal fatigue seem complicated aswell but at least is something ..and from what i know it can be healed with time.I just don't think i can cope with a diagnostic like CFS,wich leaves you basicaly without knowing what you should do to make yourself better
     
  15. notmyself

    notmyself Senior Member

    Messages:
    246
    Likes:
    304
    Hi, thanks for answering...i did check the vitamins ,iron ,magnesium and many others related to fatigue..the doctor tell me and i quote'' Your analises are to envy,rearely i see such good results..this let me speachless ,knowing for sure that something is not right..i kinda lose my faith in doctors... Can you tell what trigger your cfs?? i didint see so many people having a slow onset..
     
  16. notmyself

    notmyself Senior Member

    Messages:
    246
    Likes:
    304
    H
    HI...sorry to hear about all of your troubles..i don't know the other meds ..but i used to take prozac for a while aswell alongside mirtazepine..i hated them both completelly i will never touch this kind of meds in my life..i know they can cause fatigue but didin t know they can trigger something like cfs..i t's been almost 1 year since i quit them( take them for just 6 months)..didin t have any serious withdrawal..and my mild depression and anxiety lift after a while after quiting them..
     
    xrayspex likes this.
  17. carer51

    carer51 carer/partner of moderate/severe sufferer

    Messages:
    65
    Likes:
    193
    UK
    I should clarify that I myself don't have CFS, I care for my partner who does - however I did have a few years of CFS-like symptoms, mainly fairly intense fatigue. I think some of this, to begin with a few years ago, was from overtraining (roller derby, gym and weight training whilst trying to have a full time job and dealing with anxiety and depression) but I also don't seem to tolerate antidepressants well. Since I stopped taking antidepressants (and I have been on 6 kinds!) my fatigue, which seemed to be getting worse and worse, has greatly reduced. But again, I don't have CFS. I was wondering if you could be experiencing fatigue from exercising a lot, or from stress/anxiety/having a lot going on in your life. I agree that you probably don't have CFS itself, at least not at this point.

    If you think about athletes at the top of their game, who are training hard 5 days a week, they don't also have to deal with a full time job for example, or they may not necessarily feel great the rest of the time - they don't have to *feel good*, they only have to meet their athletic targets. They might feel awful the rest of the time! Athletes, soldiers, people who have to be at the top of their game physically tend to burn out young, because working out a *lot* puts a lot of stress on your body. I'm not saying that you are definitely working out too much, just one thing to perhaps consider in trying to find an answer. You could try working out 3 or 4 times a week instead, or look at what activities/stressors/work you can cut down on to see if that helps.

    And the sleep issue could be something to look into as well.

    Best of luck, fatigue is a horrible feeling!
     
    Last edited: Jan 27, 2017
    notmyself and xrayspex like this.
  18. xrayspex

    xrayspex Senior Member

    Messages:
    966
    Likes:
    232
    u.s.a.
    good plan not to take those meds.....for some people they are life savers I know but for others they cause more trouble than they are worth.

    Now is an opportunity for you to listen to your body and perhaps work on getting balance, take really good care of yourself.....pace yourself with your workouts, figure out best foods for your type, get enough rest, take care of your mental health and relationships etc Maybe whatever is going on you can tame with good self care at this point. I am not a medical person though so if things continue and you are concerned maybe you could find an integrative more holistic doctor with good reputation to help you analyze things. This website is really good for learning a lot and trying to figure it out on your own.
     
    notmyself likes this.
  19. lnester7

    lnester7 Seven

    Messages:
    2,277
    Likes:
    3,186
    USA
    I have a few issues by now complications of the CFS, I developed POTs too and I have colitis, But my relapses were all triggered by exercise, I remember exactly each one, I have been on kind of remissions like 3 times.
    First time I did pull ups on a bar. Second, I did a video Gillian (the lady from the biggest looser), the third I tried to run.
    I do not handle aerobic, every time I go heavy aerobic I relapse, now I have other things like stomach bug, the fall, and other things that will crash me, specially every fall, no matter what I do, I relapse.

    I take a lot of energy things by now and I respond well to the classic ones: COQ10, D-ribose, ALC w ALA. I added a few PEM boosters lately but I am on a bad patch right now, I was doing great before this crash, I think I was exercising too much again. I can handle about 30min of recumbent bike but I have been pushing 1h + some my own body weight strengthening exercises (cant let things hang!).

    I have a hate love relationship w exercise you would ask why! well if I don't exercise I plateau the only way I get better is by exercising (be aware my POTs is worst than my CFS). but exercise is good for POTs but bad for CFS, let it to me to get 2 mutually exclusive diseases!

    My doctor has my CFS mostly controlled. I am on antivirals + immune mods.
     
    xrayspex likes this.
  20. notmyself

    notmyself Senior Member

    Messages:
    246
    Likes:
    304
    Thanks all of you for your answers!!..i'm actually surprise to see so many people willing to help and give an advice even if many of you suffer from this horrible disease..if i will tell to anyone of my friends my problems they will say i 'm lazy or crazy..I don't know if i have cfs or not..but i will start taking more care of myself..i'm gonna try meditation for my anxiety and some suplements for the fatigue problem..I order D-ribose,l-carnitine ,and L-glutamine..i hope they will help
     

See more popular forum discussions.

Share This Page