Discussions By Condition: I cannot get a diagnosis.

I'm spending 16-20 hours a day in bed, HELP!

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: Anonymous
  • June 30, 2010
  • 11:23 PM

I am desperate for help, my doctor can't seem to figure out what's wrong with me & I don't think anyone understands how severely this is affecting me.

I'm tired all the time. Not sleepy (in fact, I only need about 6-8 hours of sleep a day). It's my body, it's just not functioning, it's hard to move and hard to sustain activity, I constantly need to sit or lay down, and most days I spend close to 20 hours in bed (reading or watching TV or laptop). I cannot do any of the things I used to enjoy, I used to be very active & loved working out daily etc. The fatigue has been getting progressively worse over the last 5 years and now even more rapidly.

I've had tons & tons of bloodwork & nothing is outrageously off. My Vit. D & magnesium were pretty low, iron & B12 borderline low, so I'm taking supplements for all of those, as well as some diet/herbal stuff to improve thyroid & adrenal function as those were both borderline abnormal as well. No lyme, normal RBC etc., somewhat high WBC, normal everything else... The supplements don't seem to be helping one bit, it's only been a month or so but if anything I'm just getting worse by the day.

I'm in my 20's, female... Other symptoms:
-frequent headaches (not quite full-blown migraines but many similar features, when I get full migraines once every year or two I lose most of my vision & go numb on one side of my body)
-wandering pains, often in my lower back or stomach but sometimes just random, and wandering numbness/tingling
-nausea
-wake up feeling like I've been hit by a truck (headache & every bone & joint hurts)
-fast, erratic heart beat, and loud heart murmur (still being evaluated)
-dizziness/vision loss on standing, though this has actually subsided lately

Please please please... I'd really appreciate any insight, I'm so miserable & feeling more depressed & hopeless by the day because of this, I can't imagine living like this forever & I'm afraid I'll end up a lump in a wheelchair. :(

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16 Replies:

  • Other things I should add... I'm becoming increasingly allergic to more & more foods... Also been hypoglycemic my whole life...
    Anonymous 42789 Replies Flag this Response
  • Ok, here are some things you may want to look into (if you haven't already). First thing's first, get a pregnancy test done, if you haven't already.Get tested for diabetes, especially if you have a family history.Get titers done for Epstein-Barr (Mono).If all else fails, consider celiac disease, which is a gluten allergy (and depending on where you live, they put in pretty much everything) Granted your symptoms are fairly common and relatively nonspecific, so reaching a definitive diagnosis may be difficult. Those are just some ideas.
    gregtfish 67 Replies Flag this Response
  • I also forgot to add sleep apnea.
    gregtfish 67 Replies Flag this Response
  • Thanks for the reply. My mom & sister both have sleep apnea but I don't have the same symptoms they do so I doubt that's what it is. I can't do an overnight test right now but it's something I'll think about in the future...I'm not pregnant. I'm not diabetic. Epstein-Barr showed I had it in the past but not currently. I have considered celiac & am still wondering about it, although I actually follow a 95% gluten-free diet already. I'll have to see about testing for that.
    Anonymous 42789 Replies Flag this Response
  • Are you on any medications? Anything at all is important to mention, even if doesn't seem relevant.
    Anonymous 42789 Replies Flag this Response
  • Are you on any medications? Anything at all is important to mention, even if doesn't seem relevant.No, only vitamin supplements mentioned above & tried an herbal adrenal formulation for the past 2 weeks.
    Anonymous 42789 Replies Flag this Response
  • Have you had a tsh done? Or been tested for lyme disease? Just curious. Another thing is have you had a sleep study done? Some people don't go into certain stages of sleep which leaves them profoundly fatigued.
    ferretlady 7 Replies Flag this Response
  • Sounds like chronic fatigue immunity dysfunction syndrome CFIDS (along called CFS). As it is worst after any form of activity.. it really can stop one from being on ones feet tachycardia isnt uncommon in it. I suggest you look at the CFIDS symptom list which has been done based on studies http://wwcoco.com/cfids/bernesx.html With CFIDS one often gets fibromyalgia (that causes pain in various body parts) .. and also POTS is common in it (POTS causes tachycardia and problems on standing eg blurred vision as blood may not get to the brain well) which it sounds as if you may possibly have too. http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome I suggest you go and chat to the nice guys in the CFS forum http://forum.notcrazy.net/ and they will help you learn more about this illness, i think you will find you can relate. There are so many misconceptions and confusion about it.. you are heading into a mine field (cause each country diagnoses completely differently and views what is the same illness differently). As there is currently no cure as such for CFIDS, you need to treat all the issues it causes that you have.. eg headaches, pain, POTS, fibro etc etc To contact your countries CFS/ME/CFIDS association http://www.forums.aboutmecfs.org/showwiki.php?title=Patient+Data+Repository+and+Treatment+Review+Project:CFS+ME+Support+Groups+and+Organisations (I suggest to avoid those which are starred............. Do you get any menstrational issues eg long cycles or irregular cycles??
    taniaaust1 2267 Replies Flag this Response
  • Have you had a tsh done? Or been tested for lyme disease? Just curious. Another thing is have you had a sleep study done? Some people don't go into certain stages of sleep which leaves them profoundly fatigued.Lyme test was negative... is the tsh the blood test? I have had a bunch of different thyroid blood tests and they were all normal (though on the low end of the range). I haven't had a sleep study & am not able to have one in the near future (family reasons).Sounds like chronic fatigue immunity dysfunction syndrome CFIDS (along called CFS). As it is worst after any form of activity.. it really can stop one from being on ones feetDo you get any menstrational issues eg long cycles or irregular cycles??My cycles have always been 30-33 days and pretty regular, maybe 1-2 cycles a year will be a little shorter or a little longer.Here's the thing with CFS. I don't really believe in it. One doctor told me I had CFS several years ago (without even examining me!!! :mad:) and I will admit a lot of the symptoms are similar but I don't have fevers or sore throats or anything... and I kind of feel (and my current doc agrees) that CFS is just a catch-all 'diagnosis' for when they can't diagnose the real issue....
    Anonymous 42789 Replies Flag this Response
  • 1. Low iron will cause many of the problems you listed. It will take a extended period for your iron level to increase. Are your periods heavy? 2. I would stop drinking anything with caffeine. Caffiene decreases iron absorption. Headaches can be worse with caffeine.
    Anonymous 42789 Replies Flag this Response
  • Here's the thing with CFS. I don't really believe in it. One doctor told me I had CFS several years ago (without even examining me!!! :mad:) and I will admit a lot of the symptoms are similar but I don't have fevers or sore throats or anything... and I kind of feel (and my current doc agrees) that CFS is just a catch-all 'diagnosis' for when they can't diagnose the real issue.... It is true that many with CFS do have another issue and hence have been falsely diagnosed... what further confuses people is there are subgroups in CFS (and also completely different CFS definations). And to top off the issue.. many doctors will use CFS as a wastebasket defination. Most with CFS who are really ill.. dont believe in the CDC and the English CFS definations (which end up including many who just have depression and people who just arent really sick!!). The canadian defination is much more accepted world wide as that includes neurological issues (those issues will often get one rejected from a CFS diagnoses with the English/American definations). Not all with CFS/CFIDS (using the better definations) do get sore throats but yes that is more of a pointer towards CFIDS when one has obvious immune stuff going on too. You not having that may indicate that you may not have CFIDS thou getting more and more intollerant to foods is an immune response!. Looking at your symptoms.. they would be covered if you just turned out to have fibromyaliga and POTS. As those conditions are testable (POTS more so than fibro).. i suggest you to get tested for them both. True CFS patients often have very similar patterns to their illness and a proper CFS specialist (not one who's a Wessely supporter) will recognise a CFS patient as being quite distinct from other illnesses. (i noticed you said nothing which indicated any common CFS history. no triggering events of any kind, CFIDS often has triggers eg viral or something else). Ive never had a CFS specialist give his opinion in a short time. One i saw spent 4 hrs with me on first appointment and the other one 2 hrs, the third one was over 1.5 hrs. Due to the huge amount of symptoms those with CFIDS have, diagnoses doesnt take place quickly as soo many other things do have to be ruled out. Many many tests have to be done to rule out things, so run a mile from any doctor who tries to diagnose CFIDS without ruling everything he can think of out. Even if you dont have CFS, if you can find a CFS specialist who isnt of the Wessely school, they are great for ruling out like illnesses to CFS in ones who have symptoms similar to CFS. (my own did many many tests which the MPs had never thought to do eg rickettsia and heaps of other tests)
    taniaaust1 2267 Replies Flag this Response
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  • Other things I should add... I'm becoming increasingly allergic to more & more foods... Also been hypoglycemic my whole life... Also see if you can get a 2 hr insulin test done if you havent had one already. As insulin issues can give you hypoglycemia and also cause many different symptoms. So it's possible you may have an issue there.
    taniaaust1 2267 Replies Flag this Response
  • Thanks... it never occurred to be to see a CFS specialist so they could rule out other conditions. I like my current doctor but I feel like he's running out of ideas so if we don't get anywhere with the ideas suggested here then maybe a CFS specialist is my next step. I hate the idea of having CFS, specifically because there's no cure, but also because it was totally used as a wastebasket diagnosis with my previous doctor, and lots of other issues with the diagnosis, left me feeling very frustrated!! I will look into POTS too. I don't think I have fibromyalgia because my symptoms don't really match up but maybe if there is something else going on too, that might be interfering with it... So confusing & I hate feeling like I have to be my own doctor & get a medical degree just to diagnosis myself properly!!!Oh and as far as a CFS-triggering illness. I was very sick for a few days about 3-4 months before the fatigue onset -- in January ~5 years ago I went to a third-world country for a week & had a high fever & digestive issues & was bedridden for half the trip. The fatigue etc. started in April of that year. Usually I hear CFS-triggers occurring a few weeks to a month before though??
    Anonymous 42789 Replies Flag this Response
  • in January ~5 years ago I went to a third-world country for a week & had a high fever & digestive issues & was bedridden for half the trip. The fatigue etc. started in April of that year. Usually I hear CFS-triggers occurring a few weeks to a month before though?? Hard to say but id think its probably unrelated. Is it possible that you picked up some kind of parasite while in the third world country?. I guess that is another thing which should be discounted. There could be things from that other country which doctors here dont know much about.
    taniaaust1 2267 Replies Flag this Response
  • 1. Low iron will cause many of the problems you listed. It will take a extended period for your iron level to increase. Are your periods heavy? 2. I would stop drinking anything with caffeine. Caffiene decreases iron absorption. Headaches can be worse with caffeine.My iron stores (ferritin) were on the low side but still in range, but I've been taking an iron supplement for a month or two now... no anemia though. I don't think my periods are particularly heavy, pretty normal as far as I know.I don't drink anything with caffeine.taniaaust1... I was thinking about parasites too... I'll add that too my list...
    Anonymous 42789 Replies Flag this Response
  • get a cpap it makes all the difference your oxygen could be low, you could have heart trouble, mine did not show up on tests until they did a cardiac cath and I was sleeping like you unable to function. Now that I have had open heart surgery and use the cpap Im ok.
    Anonymous 42789 Replies
    • December 1, 2010
    • 07:19 PM
    • 0
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