A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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People with mild CSF/ME

Discussion in 'Lifestyle Management' started by 16bit, Jul 30, 2017.

  1. 16bit

    16bit

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    Hello all.

    I was wondering if there are any fit / active people with CFS/ME around?

    I have met a few people with this condition before and since my diagnosis. But honestly I feel very alone still because it doesn't seem like anyone can share my experience.

    It is believed I developed CFS/ME about six years ago. I had three periods in which I was quite bad. However, with my doctor's help, I tried to take control of my health... which landed me stuck in bed and the house for a few months. This is because adding gym and a social life (when I was a student) was too much for me.

    It is at that time my doctor thought it could be more than just stress, and this year (two years later) I was diagnosed with CFS/ME.

    I now currently work part-time (30hrs) and I work a physical job too. It's unrelated to my studies. The reason I got this job is because I found that I could not go to the gym anymore. Having to work and going to the gym were not something I could do together. But it keeps me active.

    I feel extremely proud of this because I am not sure that many could ever understand what it took to reach that level. Mentally and physically. I certainly had to work hard to achieve it, and still have to stay on top of my game to maintain it.

    However, even mild CFS/ME has its troubles. I am not in the all-clear, of which people I've met with more severe symptoms do not seem to understand. I am struggling with having to fit my life around this condition, and yet I fear relapsing again. I feel held hostage, quite frankly.

    I thought all this good fortunate of gradual improvement would bring me bliss, but all I feel is trapped and helpless in another situation. So I was just hoping to find anyone who could relate.

    I am confident I cannot be the only person!

    If willing, please share your experiences. I would be very grateful. Thank you!
     
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  2. lafarfelue

    lafarfelue Senior Member

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    You're not alone. It can be difficult to talk about a mild level of illness because it seems like a slap in the face to those who are more severely affected. What we experience with mild ME/CFS is just as valid, though. We are literally all in this boat together and deserve to be treated (with recognition, respect and some useful healthcare! :)).

    I don't think that I'm quite as physically able as you, but compared with others with ME/CFS, I would consider myself to be mild.

    I work a desk job fulltime, with 2 days from home. I can't really make it out after work for drinks or anything social (or a movie etc), but I can usually make it out for lunch (to the thanks of our public transport network, mainly!) or to run an errand that can't be done over the phone/internet.

    I have no social life. My friends seem to be completely put off or confused by the fact that I can't meet them out anymore, so I just don't see anyone unless they happen to work near my workplace offices. Even when my housemates have people over for dinners, I often can't really even socialise, let alone help with hosting all evening... so stay in my room for most of those dinners.

    I have hardly any hobbies. I don't cycle or mountain bike at all anymore. I don't go for leisurely strolls to local parks to enjoy a nice day (most 'nice days' are physical torment to me now.. the heat, the light, the noise :wide-eyed::grumpy:). I start on small creative projects but need to take week long to multiple month long breaks, just because it all drains my physical and mental capacity so quickly. I can't read books any more, so I've filled the gap with Netflix and other streaming services.

    And I consider myself relatively lucky.

    AND I also feel completely trapped by my situation... what if I relapse to those months when I could hardly function, and then I stay that way? I can't move 'forwards' in any way; no career change is possible, changing jobs seems virtually impossible even in my relatively ok state. I have this vague idea of moving a bit further out to the country and working part time, so that I have more mental space and fewer/smaller physical and financial obligations... but the idea of that is overwhelming.

    So, I just try to make the most of where I am. I will be like this for the foreseeable future. Fighting it hasn't helped me one jot. I do experience a recurring cycle of grieving, acceptance, distress and grieving again... but it's easier making myself comfortable with my level of disability (and accepting that, yes, I am disabled!) than fighting it and being really angry about it. (I prefer to retain my righteous anger towards all these useless, rude, pathetic medical communities that have let us all down time and time again :mad::bang-head: ;))

    I can relate. We have more hurdles than 'normies'. Soooo many more hurdles. We have to shape everything to our illness, our level of disability. I'm trying to be happy in the moment as much as I possibly can. I'm working hard at figuring out what 'happy' means to me.. though I've always been trying to figure this out. :p:rolleyes: Hopefully I can figure out this 'acceptance' thing better, and keep on working from there.
     
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  3. TiredBill

    TiredBill Senior Member

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    @16bit

    Hello again. I would never describe my experience with CFS/ME as "mild," but I do view the journey in 3 distinct stages.

    Stage 1. Viral-ish. Incapacitated. Night sweats. Swollen glands. Bed-ridden. Down.

    Stage 2. Still pretty compromised. Very prone to relapse. Very sensitive to chemicals (cigarette smoke and acetone for example). Limited energy (when I had energy) that had to use used wisely when it was available, and not pressed when it wasn't. But up and moving.

    Stage 3. Not free of CFS/ME or fatigue, but far less prone to relapse or to really bad PEM (a term I only learned this week on this forum, but a concept I know well after 33 years with this condition). Still needing to monitor not overdoing, but when the envelope is pushed it might mean a bad next day and not a bad next week. And "bad" means feeling really tired, but rarely meaning I'm headed for bed.

    But I overdid yesterday, moving rocks and preparing the grounds around my home for planting, and today I'm knackered. But not like Stage 2 knackered. And not like Stage 1 when summoning the energy travel to the bathroom was all I had.

    It's been over 25 years in what I'd call Stage 3. I've worked some very brutal hours (although in mentally demanding jobs, rather than physically demanding ones). That hasn't always been easy. It has taken will and good luck.

    For the past 5 years, I've been the head coach of a youth Lacrosse team. At times it has been great for me to get out and run around with the boys, other times I question my sanity, sometimes I fake having the stamina to do it, and sometimes it is great.

    I always know my little friend CFS/ME is with me. Is this "mild?" I don't feel it is mild. Then I read threads here where people are experiencing what I'd call Stage 1 or Stage 2, and it makes me understand how blessed I am to me where I am and how far I've come.

    Bill
     
  4. 16bit

    16bit

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    I can empathise to a degree. I have chronic migraines. It does not compare experience-wise to people who get the odd migraine, even up to once a week.

    At the same time, I've never once been disrespectful towards people who talk to me about it. I don't engage in what I understand now to be the "pain Olympics".

    Because even once a month or year sucks as migraines can be a killer! It's the same thing. Just impacts us differently.

    That is why I am sad to encounter this when reaching out myself about CFS. But in hopeful that here is friendlier! It seems to be.

    But I can relate @lafarfelue

    Funny enough, I was a salesperson working 20hrs before and it almost killed me. I think type of job I do is important.

    Sitting down in lectures for six hours in a day was an instant KO for me too. By two hours, I'd already feel overwhelmed. So the rest of the time was a struggle to stay focused and present.

    I honestly think I just found the right job for me because I can vary my activities greatly. I can even sit and do my work most of the time if I choose.

    Not that it's not demanding at times. There can be a lot of heavy lifting, when sometimes even a light box makes me break out a sweat.

    My work don't know about my illness. I don't know whether to tell them or not.

    I want to change job as I want to go full-time but there's no way I could do this job full-time. I don't really want to change, buy even this job can be too much for me. I take a lot of sick days off! All unpaid, so it's a financial burden to be in this too.

    I feel like my mind wants one thing, my body another.

    & Thank you for your response! I appreciate it greatly.
     
  5. 16bit

    16bit

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    @TiredBill I still get fluish and am sensitive to my surroundings. I am wearing special glasses right now to help light sensitivity, for example! Smells are awful for me too, as well as vibrations.

    I think our levels for anyone who feels they have mild or manageble symptoms is probably all different.

    I still get stuck in bed from time to time, and really sluggish / bad muscle weakness (although my meds help with that). But it's so much better, and I get less of that the more I take it easy.

    My CFS and migraines interlink, as they have many of the same symptoms. So that may be part of it.

    It's great that you have achieved all of that! I hope to improve with will and good luck too.
     
  6. notmyself

    notmyself Senior Member

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    hi. I have mild me/cfs aswell or something related .i got very close recently to feeling almost normal,but the last days is little bad again,is this cycle this making me crazy,and the fact that i don tunderstand exactly what's going on.I hope that for those with milder cases the chances of full recovery are higher..if not even with mild cfs i will never be happy..my personality just ca n t deal with this for all my life..
     
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  7. eric_gladiator

    eric_gladiator Senior Member

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    I was in a mild CFS for several years and would probably still go if it was not because duloxetine fired all the symptoms. To me what I saved then was natural medicine, I started to sleep phenomenally, to feel more alive and calm, to enjoy everything .. even better than when I was without CFS. I always say that I wish I had discovered natural medicine before and this would never have happened to me
     
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  8. notmyself

    notmyself Senior Member

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    Reading things like this give me so much hope! thank you..i'm almost one year sick..I never been stage 1 ,i have periods of stage 2-3 like you describe..i have had some days of stage-normal aswell but not recently..i feel i'm getting worse,and i'm afraid to not become severe like so many,but seeing that you have 25 years of relative good health,able to work and enjoy things is trully empowering!
     
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  9. notmyself

    notmyself Senior Member

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    mirtazepine in my case:) same story basicly
     
  10. pattismith

    pattismith Senior Member

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    Hi @16bit , you are not alone, thank you for speaking for milder patients.

    I struggled too to keep working for 20 years. I work 33 (winter) to 50 hours (summer) a week, in my practice, and I live upstair, so I didn't waste any energy in car journeys.

    My husband works with me, helping as much as he can, and I wouldn't have managed to succeed without him.

    I had to employ more and more salaried staff to help me because I couldn't handle my job, my house work and walking my pets by myself.
    This lead me to work more and more in order to pay the salaries, at a time were I needed to rest.
    No hollidays for 20 years.
    But I managed to keep hobbies during my week ends.

    I am used to live and work with few energy since I am teenager, so I supposed I adapted to it. I have no merit at all.

    When joints pain, muscle pains and brain fog were in their worst times, when depression was at it worst, it was a kind of nightmare (specialy because I am working with public).
    I was lying each time I could during my working time or as soon as my work was over.
    My husband is the one that made this possible, and also my salaries.
    He had the bad task to keep bankers understanding, while they were not at all, and took advantage of my difficulties.
    I am still not free of their power over my life, but I am close to succeed in this aspect too.

    of course no social life, no family life, just working, hobbying, resting.

    While I was back to zombiland for more than one year last winter, I suddenly made hugh progress to take control over my health these past months and today I feel rather optimistic for the future.
    I was convinced I wouldn't make it, but sometimes, when you are at the bottom of the hole, when you think the game is over, something happens and your survival instinct take the opportunity.

    I feel really sad for all the patients here that are bedbound or unable to work, because my work was a great motivation, together with my husband and my pets.
    Some of you were so suddenly ill, that it was not possible for you to adapt life to it, it must be very depressing and hard to cope with that.
    I feel lucky to have managed to go through all these hard times with almost no help from family or social organizations or doctors, very lucky!

    I just want to tell everybody here to never despair, to take the energy around you were you can catch it, in things that keep you passionate, in the web where you can still live intense things without going out, in arts or whatever.
     
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hopefully not. Many of us here that are long term and more severely affected were mild at one point. I think that it is the hallmark of the seriousness of ME that even mildly affected is life limiting. And that is very valid.

    Since I'm neither new to ME, young or mildly affected I hope the following comments will not be seen as poking in on the conversation.

    Looking back I would have this advice for mildly affected people:

    Think about where you live. Think about it for a while with these considerations: are you close by to people who care about you and can offer assistance, are you close to the things you need-- amenities and such. What is your specific housing like for a person with ME (by this I mean are there a lot of stairs, is it noisy etc.) Are you able to relocate your job if the answers to these questions are negative. It's not unreasonable to hope for better days but if you do in fact have ME it's pragmatic to plan for the future now while you still can--later may be too late or just very difficult.

    Assess your housing situation. What adjustments might you make (maybe you need to save up money for) that will make living simpler, easier to manage. Or just useful aids to functioning (this could be for example buying window coverings that better block out light for better sleep) Do it now. Don't wait til you really need to.

    And finally, instead of looking for individual friends look for support from others through groups (religious, disabled, hobbies activist or community types that work for change etc). The type of group is very much a personal decision but I'd stay away from groups that thrive on energy experiences. You may have to 'try' a few different types of groups before you get comfortable. Start now. It takes courage to face this and courage is at least as useful as hope. It may turn out you find down the road you didn't need to do all those things. It's better than finding you should have considered the future and now cannot manage to do what might have been of help and consolation.

    Enjoy what activity level you have. Don't stop trying to find that level that allows you to do things without exacerbating symptoms. Feel good about this.
    But consider pragmatically that there are specific things you can do now that might have a lasting positive impact on your future.

    And last, the world isn't all about us--despite our very real needs. Care about the community you live in and the people around you. It could prove to be very positive.
     
  12. Murph

    Murph :)

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    I'm mild. I can do some things most people on this forum couldn't (and yet I can't do some things that some people on this forum can do!).

    But I know I have CFS because the PEM is extremely characteristic and has been going on for 15 years! After ten years of being very mild it really took a worsening of my symptoms to the moderate end of mild a few years back for me to get out of denial and seek treatment.

    My experience as a mild person makes me wonder how many many mildly affected people are out there who think this crushing inability to do stuff is natural or just getting old.

    A lot of disease is determined by placing an arbitrary cut off on a continuous variation. (e.g. adult diabetes , hypertension.) I wonder if the same might be true of ME/CFS - an exaggeration of a normal response rather than a binary condition that will stand out in lab tests.
     
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  13. ljimbo423

    ljimbo423 Senior Member

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    This has a strong ring of truth to me! My son is a good example. He is able to function at about 80%, yet nothing has ever been found with wrong with his health.

    I also functioned at about 75-80% for several years before I became disabled with cfs. I was told it was depression and what it really was, was fatigue!

    I think that level of cfs, (mild) is profoundly more common than most people realize. Making me also think that it is normal processes that have gotten out of control.

    Jim
     
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  14. lafarfelue

    lafarfelue Senior Member

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    This has been on my mind non-stop since talking about ME/CFS with pwME friends of mine (and comparing my abilities with theirs), and then even more so since I've been diagnosed with ME/CFS. What is 'normal'..? How do or should medicine really measure that currently arbitrary cut off..? I feel like my condition(s) are exaggerations and I've been gradually worsening for what seems like decades. (I've also been thinking about this for a lot less time than people like you and @ljimbo423 ... so please excuse my naivete and simplification of complex issues!)
     
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  15. eric_gladiator

    eric_gladiator Senior Member

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    @notmyself

    What happened exactly? You were in a mild state with no symptoms and when you take that medicine and it gets worse badly?
     
  16. notmyself

    notmyself Senior Member

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    I think is is very common aswell..A lot of people work
    i was tired and anxios let's say,but working 50 hours a week..4 to 12 midnight, and gym 4-5 day a week..was a normal tired i guess..nowhere near cfs fatigue.I was also having diziness,wich i always said is caused by anxiety,but now i'm not so sure.Anyway i was not having cfs back than, seeing all the symptoms that i have now makes me realize how healthy i actually was back then,,Mostly becuase of that wretched pression diziness in the head and anxiety i start taking mirtazepine and prozac,..i quit after 10 months..and i was getting fatigue as withdrawal and insomnia..Soon after i get some respiratory infection ,nothing serious but they last 2 months more or less..After that i developed slowly but surelly Cfs.and it seems i'm going more and more in the worng direction..SO yes mirtazepine played a huge role in my developing of cfs.It's more than a year since i quit them..this is not withdrawal anymore..They mess up my immune system and those infection triggers my cfs..wihtout mirtazepine i would nt be here..
     
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  17. JES

    JES Senior Member

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    Can you expand a bit on what you mean by "natural medicine" and how that helped you to improve? If by natural medicine you mean alternative medicine (herbs etc.), they are not that different from many pharma products that are also based on naturally extracted compounds. For example, aspirin is based on leaves from willow tree. The supplement industry is as huge these days as pharma so you'll probably find some products that work and many others that are a total scam. So that's why I wanted to know more in detail what made the improvement.

    I'm in the category of mild CFS/ME, though most of my symptoms are more related to cognition than physical strength. Brain fog, anxiety, pain (small fiber neuropathy), fatigue, feeling ill, etc. Over the last five years, my symptoms have worsened somewhat, but not as much to make me bedbound or unable to do office work. The primary medications that helped me (somewhat) have been LDN, selenium, probiotics and fish oil.

    I have trialed hundreds of "natural" supplements. 50% or more made no difference, around 30% have made me worse, and 10% improved somewhat, though usually even the supplements that helped stopped working within a week or two. I've also trialed several antidepressants, some of which helped a bit for the anxiety part, but also stopped working within a few months. It's worth to point out that within antidepressants, there are several different categories of drugs, some which are better tolerated than others. Based on this forum, people with CFS/ME seem to do badly on SSRI/SNRI and react with strong side effects, whereas I've read quite a few stories from people that continue to take Bupropion daily. It's a shame that doctors begin with prescribing SSRI/SNRI when there are so many other options that are batter tolerated for anxiety/depression.
     
    Last edited: Aug 9, 2017
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  18. eric_gladiator

    eric_gladiator Senior Member

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    @notmyself
    If you are sure of what caused it that is a good sign, I do not remember having any infections and here I am looking for answers
     
  19. eric_gladiator

    eric_gladiator Senior Member

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    @JES Exactly, I mean herbs. In my case before I was mild, and the only symptoms I noticed were tiredness and some other minor memory problems, for example in the studies I did not concentrate as before. For the rest I was doing a normal life which is now unthinkable. I believe and suspect that duloxetine acts as a trigger but the strange thing is that I do not notice any infection unless I have stomach pain and I almost can not eat out an infection and I did not know it. Anyway I can not understand why the doctors prescribe that knowing that we are no longer well
     
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  20. notmyself

    notmyself Senior Member

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    wich just tiredness and minor memory problems..you didin't have ME ..i belive in your case you just had a bad reactions to duloxetine,if you don't recall an infection chances are even bigger that you don t have Me..Maybe duloxetine cause some sort of imbalance in your brain chemestry and hormonal..and that ;s why you feel like this...i wish i was on the same boat..but i have to many symptoms that i cannot explain, i also have viral ilness that made all this worse..but i still have some hopes tho..during this 9 months of illness there were good days aswell..is like i'm going in cycles of 2-3 weeks good, followed by 2-3 weeks bad..before my last relapse wich i'm curently in i have probably the best period,still with many issues,like insomnia, dizziness, shaky legs..but didin t look like ME at all in that time..now i 'm down with all sort of symptoms ,wich can be explain only by this illness
     

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