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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Life as a Student with ME/CFS

Discussion in 'Lifestyle Management' started by LilacGardenia, Feb 1, 2012.

  1. LilacGardenia

    LilacGardenia

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    I'm a college freshman, my ME/CFS symptoms started a few years ago. It was also suspected that I had the PANDAS thing going on when I was in elementary school and on up. I personally believe these responses to infection and post infection is tied together rather than separate things. Anyways (back to my point) :D I am a student, I've had to deal with quite a lot over the years, but now as my ME/CFS symptoms have gotten worse and I have the whole new environment of college to settle into, I've run into quite a few new obstacles. I commute from my house since I live so close, and am involved in two committees along with my full schedule. This is my second semester and so far (I'm only about 1/4 of the way through) it's going pretty well... at least a lot better compared to fall semester. I'm typically an A student -- I'm really dedicated to my studies and truly passionate about them, but fall semester I ended up dropping my math class halfway through the semester and my grades dropped quite a bit (2 A-'s, 1 B- and 2 C's) it's obviously taking a toll on my overall GPA which is annoying since I know I could have done better (half of the classes were even easier than some of my high school classes). Right now I have all A's and one B- but like I said, it's only the 1/4 mark of spring semester. Also during fall semester I had a really really bad fall and had some almost mini-seizures that were obviously really awkward. I also get short of breath and get really pale with purple fingers/toes and finger/toe nails along with numbness and tingling... it really freaks me out.

    I had testing done and everything (thyroid hormone tests, iron levels, and blood cell counts) were normal, I just had some protein in my urine. My doctor gave me Cerefolin NAC to try and said

    Okay, so maybe this ended up being more my story and questions about coping with ME/CFS at school, but I do want to know:
    Is there are any other students (or even former students or people in the workforce) and how do you manage/cope (especially with the fatigue, dizziness, and cognition issues)?
  2. Ember

    Ember Senior Member

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    You may want to consider carrying a lighter load to protect both your health and your GPA. As you know, the workload builds over the term, and it's such a waste of energy to drop a course halfway through.

    Many people with this illness try too long to push themselves and end up regretting it. How did I manage/cope? I was still working full-time when I collapsed completely.
    ggingues likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Hi :) .. Welcome here.

    I do wonder if you do in fact have ME/CFS or something else for several reasons (no mention of post excertional symptoms in your post and only a few things mentioned). Most who have this, have cognitive issues often quite bad in certain areas and thou your grades do fall.. it still would take a ton of brain work to be still getting some A's and Bs etc. It would be extremely hard for most with ME to be getting top of class grades due to the cognitive issues. With ME IQs can drop quite a bit (actually a lot).

    As we arent all alike so Im not saying you dont have this illness, but just that I personally think you need to take care that it is this illness causing your issues as what you've said just there.. makes me wonder if you could have something else instead.

    In my own case, I ended up basically couldnt study, no amount of dedication could get me able to do that. My brain just wouldnt retain new info (I was at college when I got this illness) due to the memory issues and also finding it hard to keep up with lecture speeds etc.

    I had to cut down my studies more and more and ended up having to leave college (that was many years ago now), I'd pushed myself far too much trying to do what I did and at that point ended up bedridden long term.

    As I dont know enough about your symptoms, I cant make suggestions of other possible illnesses which could of been missed but it isnt unusual for doctors to miss something, tests are only as reliable for what is actually being tested for and there are a lot of things a doctor may not think to test and hence dont.

    There are thou things which are commonly found in ME if a doctor is aware of those things and what more specialised tests to do, if one is unsure of ones diagnoses in anyway.. having ME tests done and finding some of those findings can help one to be more certain that's ones illness.

    You may want to look ialso nto other things eg POTS (postural orthostatic tachycardia) and many other very similar conditions to ME/CFS in some ways (also ones which often overlap), which also can have symptoms such as you mentioned.

    A good symptom list with the percentage of us found to have them based on actual studies is at http://wwcoco.com/cfids/bernesx.html

    anyway..welcome..

    Trying to treat whatever is causing the issues or just the symptoms themselves is the best answer. eg you could have POTS with ME.. and hence POTS needs to be treated if possible.. if you have POTS you may need to take breaks laying down. eg Lay down on the lawn while eatting your lunch or whatever.
    If you do have ME you need to find a ME/CFS specialist to help you as many doctors wont, Im wondering if you have had a specialist yet confirm your diagnoses.

    Cognitive issues in ME seem to be helped by various things but unfortunately the answer is different for each person. What has helped me, is likely not to help you. (active forms of B vitamins is one thing you could try and I'd personally recommend.. there are many good threads on that at this site and is "one" thing which has helped me in that area).

    If your question is more how does one cope at school, most schools can put those who have illnesses onto special programs and make special allowances eg in my case if I sat an exam.. I was given extra time to do it. I also was often given time extentions for my assignments. I also didnt have to attend as many classes due to being put on a special program at the college with doctors letters on my problems and was allowed to take some of my classes by correspondence.

    To cope with college work a bit better, I had to give up all my other activities.

    If you are still getting A's and good grades... I dont know if a school would want to put you onto a special program with extra tutoring or whatever so I dont know how you'd go there. Best luck
  4. silicon

    silicon Senior Member

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    When we're young, we tend to think we're invincible. I'm not so young, and yet I still struggle with this mindset. Sometimes it's not easy to know one's limits...until they have been exceeded--that's a difficult aspect of post-exertional neuro-immune exhaustion. Pacing is a survival tool. Unfortunately, pacing is so unnatural, an alien mindset. Sometimes pre-emptive rest breaks are required to prevent a crash...or a collapse. One thing that I've found that I can never overdo, is rest. If the thought comes to mind that maybe I need to rest, then invariably, that thought is truth. Overdoing is the worst enemy of this illness...you may get much further in life to the extent you avoid overdoing, relative to whatever physical constraints and limits (which change each day, sometimes each hour) are present.
    Ocean likes this.
  5. L'engle

    L'engle moderate ME

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    I would try taking a lighter course-load, and don't do the amount of work that is your absolute limit, do the amount that you can do without having your symptoms increase terribly. Even if it takes you longer to finish school, that's better than becoming too ill to finish at all. I had milder ME in college and I got through doing 3-4 courses a term instead of 5. Even that I had terrible headaches and felt ill a lot. The cognitive issues are tough. I find it to be very on/off, with brain either working properly or not at all. You might be able to still function at an 'A' student level some of the time, and if you take a reduced course load, it could help to make sure only good grades go onto your GPA. When you know you're brain's not working well, don't even look at your work, as you may end up 'unlearning' what you learned when your brain works properly!

    Don't worry about people in your program finishing before you and getting out working sooner than you. It really doesn't matter as much as protecting your health! :) Good luck :)
    ggingues likes this.
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I would drop the committee work, it's nice that you want to be involved, but unless absolutely necessary, drop it. I think you should err on the side of caution. ie better to under do things than to over do! Not sure what you are studying (mine was science) and if it matters much, but like some people suggested, I would lighten your course load, that way you don't get overwhelmed as professors typically load more work later in the semester.

    I used to have a lot of brain fog (diagnosed CFS and Fibro), not sure what resolved it, I had a major flare up 2.5 years ago and went "nuts" changing a lot of things in my life, was tired of the change only 1 thing at a time to see if improvements happen, well 2 to 3 months on some drug and then another, turns into years! I have been sick for nearly 9 years now. I found a good Dr a few years ago, and I have been getting better! I did detox for a few months when I started with him, and have recently started detox again with chlorella. He also has me on a Vitamin B supplement. I work part-time, 30 hours/week.

    GG

    PS You might want to research LDN, I have been on that for over 2 years now, and high doses of Vitamin D. I have blood work done regulary, 2 to 4 times/year.
  7. madietodd

    madietodd Senior Member

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    Are you at a regular college, or a community college? All of my kids transitioned out of home-schooling by going to the local community college, where they could take as few classes as they wanted. My 22 year old is still there, taking only 2 classes this semester because they're requirements that are hard for her (math and science). She'll transfer to a 4-year college in the fall, and she'll finish whenever she finishes.
    L'engle likes this.
  8. Tia

    Tia Senior Member

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    I tried studying for 6 years. Failed, had to start over 6 times during those 6 years because I was at home sick so much that I'd been kicked out time after time. I now have a huge student loan and no education, too sick to work..dunno what the hell to do, can't pay my loan on th e disability I have so I hope they'll write it of. 'Keep your fingers crossed*
  9. LilacGardenia

    LilacGardenia

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    So first I want to say, sorry if people can't read my text. Someone said that they use a black background (not sure if it's to help the light sensitivity issues or not), but they can't read the purple text. I can sue other colors if you don't like to highlight the text/if it bothers your eyes.

    Yes, I agree with those of you saying it's a bit much. My parents fell like it's not enough and that this is all from me being too lazy -- they keep trying to get me to take on more and I feel really pressured to live up to their standards and please them (especially since they are paying my tuition that my merit scholarships didn't cover). Like I said, I'm not failing by any means, just down from my usual. While I am doing pretty well for the first 1/4 of Spring semester, I'm worried about how things will go as I have to take the "mind energy"-consuming course loads like scientific calculus (which I have to take 2 semesters of) and organic chemistry (which I also have to take 2 semesters of) not to mention the labs + class session is 5 hours long. :D I was accepted to and currently attend a university -- this semester I will have 1/4 of my bachelor's degree and I am on track with the rest of my classmates because I took some classes ahead of time, and they made up for going part time (the mere 3 courses and a lab) I took fall semester.

    I haven't seen a ME/CFS specialist, just my GP. Originally we were sure it was anemia (as I have had it many times in the past) and possibly a more severe form or due to some sort of internal bleeding (as I have been having sharp pains along with this). Everything was fine, so we did oodles of thyroid tests; everything there was fine so my GP checked for Leukemia and I had an ultrasound to check for gynecological cancers... everything was normal. I'm wondering if there is something like that wrong, could it be in an earlier stage that doesn't show up on the test? I've had a lot of like stabbing/cramping pain that's so bad I'll like pass out and vomit, and bleeding in between cycles (yet I'm still not anemic). I also had the swelling in my lower ab region, and I'll eat like a slice of dry wheat toast and a glass of water and end up soooo full I feel like I'm going to topple over and spill my guts out. Obviously because of this, I've gone from 110 pounds to 100 in a short amount of time. These are all signs of ovarian cancer, but my ultrasound showed normal results. This cancer is pretty hard to detect in the early stages, so I'm worried if it is what's going on instead of or along with ME, could it have been missed? My parents are worried and so was my GP, but we really aren't sure what could be going on, so my GP said that ME/CFS is typically considered when everything else is ruled out and the symptoms for it match up (in my case it does), but there's really no way to confirm it at this point in time.
  10. Calathea

    Calathea Darkness therapy

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    I got ME in my first year at uni. I spent eight years trying to finish my undergrad, including three years out, and gradually became more and more ill, until they tossed me out before I'd finished the degree. The main thing I regret is not taking a year or two out as soon as I became ill, and then battling through to the point that I caused a huge and permanent deterioration in my health. Remember that your priority here is not to do as well as you can academically. University can always be deferred, classes can be taken part-time or retaken. Your priority is to safeguard your health.
  11. alex3619

    alex3619 Senior Member

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    This advice is really mostly applicable to ME, not sure how well it will be if you have something else wrong.

    It is possible to study with ME for many. When I had mild ME I finished an IT degree, with honours. I won a University Medal. With moderate ME but on whey protein and other antioxidants, I finished a biochemistry degree. Except for the last year when my course load was too high and my grades fell a little, I was in the top 1%. For me its not so much about intelligence, its about how to balance the problems.

    Reducing course load becomes more important during later years of advanced studies. Course load in third year is double that of first year, even if its not reflected in how they weight the course.

    First, study when you can. All the time you have available. University is not compatible with much social life or hobbies. During course and exam months, expect to have almost no free time - with one important exception.

    Let me give several additional tips:

    1. If you are doing labwork make sure you have a chair to sit on. Standing and ME do not go well together. If necessary request one as a health measure.
    2. Do let your educational institution know you have problems. This may help later on if those problems get worse.
    3. Rest whenever you can. Do you have a time with no classes? Find somewhere quiet and go rest. Socializing is nice, and has its value, but rest time is important too.
    4. On writing papers, I used a multiple pass system. First, do some investigation, get a wide variety of materials. Start reading them long before the paper is due. Write an outline, but don't fill it in till you have read everything, instead fill in bits and pieces of ideas as you read. Then start writing your paper. Do it by selecting a reference paper/book and re-read it. Write as you read. Do this for every referenced paper. Make very sure you understand about plagiarism and copyright though, it pays not to make a mistake this way. Finally, go over the paper, smooth it out, add additional insights and commentary. The references are all there, the data is all there, this is about putting your personal touch on it.
    5. Find a study buddy. Lots of students have issues. Find someone you can study with.
    6. Pace yourself. This is where socializing and hobbies come in. I used to study half an hour and rest or play a computer game or watch a movie for an hour to an hour and a half, every night, every weekend, including holidays (though not between semester, that was all resting). This includes the very first week of classes.
    7. One trick I found very useful. My memory is fubar. While I did a moderate amount of study along the way, just before an exam I would read a summary I had prepared, several times, fast. It wasn't about memorizing or learning or understanding at that point, its about priming your memory so you wont take forever to recall it.

    Bye, Alex
    L'engle likes this.
  12. Genki

    Genki

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    I got sick my first year of college. I dropped out and took a long break, and when I went back it took about 6 years to finish. I found I was only able to do well if I kept a part time schedule to limit the work load. You might want to do that. I'm amazed that with the severity of symptoms you describe you're able to take so many classes and do so well. I was able to get certain accomodations like extensions on deadlines by getting a doctor's letter on file. You might see if you can do that. For me, some flexibility in due dates was helpful for the times I was feeling particularly tired. Colleges are supposed to make reasonable accomodations like that for students with documented disabilities. And if they aren't, you honestly might want to think about another school.

    I don't think you need to doubt too much that you have CFS. There's a big range of severity with this disorder. I never had the extreme cognitive impairment a previous poster described but I was still diagnosed with CFS because they couldn't find anything else wrong. Of course, you should always investigate other possibilities just in case you do have another medical problem.
    LilacGardenia likes this.
  13. InChristAlone

    InChristAlone

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    I would definitely recommend going to see a specialist about your CFS/ME, just to make sure that is what you have. Especially because if it is something else that can be treated, you won't have to suffer longer than you have to. (I'm not a doctor, just my opinion)

    Anyway...considered yourself blessed to be able to do everything that you're doing! I'm a student right now, and let me tell you, pacing yourself and pairing down your schedule are key essentials (for me anyway) to staying relatively healthy. At this point, I only take courses online, because going to college just isn't going to work. Whatever you know is incredibly important towards getting your further education, I would say stick with that and drop the things that aren't. That way, you're able to save your energy and put forth better effort into those things that do matter.
    LilacGardenia likes this.

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