Discussions By Condition: I cannot get a diagnosis.

Fatigue and digestive issues

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: blue372
  • January 29, 2009
  • 10:29 PM

It’s important to preface this: I have lived with these symptoms for several years, but because my health does not permit me to work, I have merely had to hope that a diagnosis would be forthcoming sometime in the future. But now that I’m reaching the end of my classes (which I take online), I risk being let loose from college without the ability to actually function in the world. First I want to attend classes on campus for a time because my hopeful profession is one that requires hands on interaction with other people. I tried attending campus once before, but those were some of my worst days in this withered state. The last thing I want to say is that I have had a few tests done: colonoscopy, blood work to test for Epstein Barr, etc. I don’t remember the full gamut because most of them were several years ago.

Some of the symptoms are as follows:

- Moderate fatigue, occasionally severe. It’s hard to predict. “Brain fog”; difficulty concentrating and remembering words and details, which makes conversation difficult. Moderate weakness. I joined cross country in high school, but now I can’t even run a mile. Straining myself tends to worsen it.

- Digestive problems; cramping, gas (the buildup of which over several hours can cause pain), bloating, mild nausea, indigestion proportionate to fatigue. Ravaging hunger pains when I go several hours without food (I don’t think that’s normal).

- Sleep problems; I sleep for an unrefreshing twelve hours a day (it’s all in one block…I don’t feel the need to fall asleep during the day). If I get less than eight or nine hours, then I’ll probably have severe fatigue throughout the day. In fact, waking up early is a horrible task. It’s like asking any healthy person to wake up from two hours of sleep day after day after day. It’s impossible for anybody to maintain on a continuous course. And yet I’m roused from sleep frequently to brief consciousness throughout the night because of any little sound; I usually fall back asleep quickly. I have occasional insomnia. In the past I have had such problems as hypnic jerks and sleep paralysis; those periods lasted for maybe weeks or months.

- Other symptoms: moderate sharp and random muscle pains everywhere, muscle tightness, occasional tingling, husky voice, strange, unappetizing tastes on my tongue. Maybe a few other things. It’s hard to keep track, hard to know what’s a symptom.

Most doctors I see characterize this as a digestive issue, including a fatigue specialist I went to a few years back (although one hospital I went to had me going on a spin cycle of specialists from one to the other). It seems to me that most of my symptoms stem from the fact that my body is broken down and weakened. I wouldn’t doubt that digestive problems are the genesis of that. I'm not sure where the bad nights of sleep germinate from.

There is one more thing that bears mentioning. I notice that a lot of people with similar symptoms tend to gain weight. I ate very badly for several years and rarely exercised because of my condition, although I only gained several unwanted pounds (I doubt I took in a huge surplus of calories, however). But since then I have found fat loss nearly impossible. I eat healthy, and I eat relatively few calories. I can only exercise so much, but I have been able to gain a moderate amount of muscle in the same time span. I’ve been trying to observe how each individual change or sensation within my body relates to my health, and I’m not entirely sure what all of that says.

One last thing: I’m in no condition to work. It’s impossible within any reasonable expectation for me to stick to a regular sleeping pattern, and I can’t predict when my fatigue will allow me to do certain things and perform common social tasks. If I don’t have a job, then I can’t afford tests and doctor visits. I don’t really understand the efficacy of this system. I need help more than most, but I don’t know how to get that help. This is a very blind question, but is there something I can do? General help would be nice, although I also wonder about any relief related to medical costs because I'm not aware of any that appeal to people who cannot work or who have not really worked in the past. I’d really like some expedience on attaching a name to these feelings and deficiencies so that I can seek a proper treatment. The workload from my classes has been very stressing on my health lately, and it reminds me that there is no way I will be able to cope once I’m smoked out from this distant existence I have erected for myself away from the daily expectations of a normal, healthy life. I’d like to absolve myself of this so that I can take my remaining classes on campus and get an actual job.

Sorry for delineating. If you could offer any help or advice, then it would be appreciated. Thanks in advance.

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14 Replies:

  • Please go to thread on B12 deficiency. You have some symptoms that sound familiar. I have this problem myself. This thread has lots of info. Look at Freddd on page 551 #5504 and read the symptoms list he gives. See if you fit in there. Go to last page of thread and read backwards a bit. I had an awful time with my stomach when I was really sick. It started with bloated full feeling then severe gastritis. Had that for almostg 2 years. Fatigue and brain fog are sure signs also..Check it out. Good luck!
    cyndyd 458 Replies
    • January 30, 2009
    • 00:44 AM
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  • Wow, this sounds uncannily like the symptoms that my 12 year old daughter is experiencing. She has missed over half of her grade 7 year due to similar symptoms. Perpetual pain in her upper left quadrant of her abdomen (this never goes away, but gets worse often after she eats), persistent headache (also does not ever goes away, but also gets worse periodically), vomiting 2-3 times a day, fatigue (sometimes extreme), excessive sleeping and not sleeping. This has been ongoing since October (I could even give you the exact day even). Pain meds do not seem to help at all.She's had blood work, urinalysis, ultrasound, x-ray...all showing nothing. She's been on beta blockers and antidepressants for migraine...no change. I've been trying her this last week with a gluten-free, dairy-free diet (as recommended by a Naturopath)...no improvement so far. I've also even tried a Chiropractor...nothing has helped or even eased any of her symptoms.The pain in her stomach yesterday was so excruciating that I took her to the ER. Re-did the testing mentioned above (except for the ultrasound), and again...normal. The doctor suggested getting a stool sample tested for Giardia (parasite), so I'm currently waiting for the "opportunity to arise", so to speak.Wish I had some further suggestions...for both you and my daughter. This is really taking a toll on our family...I've signed us up for counselling as well to learn how to cope with all of this.Wishing you health...Cindy
    Anonymous 42789 Replies
    • January 30, 2009
    • 00:49 AM
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  • Did you say you'd been evaluated for chronic fatigue syndrome?Do you have any lab work?
    richard wayne2b 1232 Replies
    • January 30, 2009
    • 01:57 PM
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  • Did anyone evaluate you for sleep apnea? Your broken sleep & jerking sound like this. Perhaps you need what's called a CPAP machine to help keep your airway open at night. You need to have a sleep study, where you go overnight to a sleep lab & get monitored while you sleep. Try here: http://www.nhlbi.nih.gov/health/dci/Diseases/SleepApnea/SleepApnea_WhatIs.html
    aquila 1263 Replies
    • January 30, 2009
    • 05:24 PM
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  • cydyd - That's a very general list of symptoms. A lot of it does sound very familiar, so here I can get more specific in relation to the list. My only symptoms related to the tongue are a white coat and strange tastes (very occasional but can grow somewhat intense...I might describe it as musky...it has that bland perfume quality to it). I don't have bladder issues at all.My muscles are always tight, but they vary in weakness. I can work out with weights, and I can build muscles. But my legs are very susceptible. I can roll out of bed, and there will be a dull ache because I didn't sleep on them perfectly. In terms of exercise, it takes about half a mile before my legs begin feeling very heavy, my body grows increasingly weak, and I can get headaches and other pains.No vomiting, but I do regurgitate if the indigestion is bad enough.I eat fish, meat, and eggs all the time without a problem. I drink a moderate amount of milk and occasionally eat cheese. I remember very few issues with dairy products.A lot of doctors have used irritable bowel syndrome in conjunction with my symptoms, so perhaps that's pertinent.I have a lot of things related to the mind. Most are simply dependent on my fatigue. If my fatigue is bad, then these will be bad: irritability, malaise, concentration, mood swings, memory impairment, listlessness, fogginess, paranoia, anxiety, nervousness, sensitivity to sounds and bright lights, raspiness in voice, fatigue and weakness, unclear hearing, ringing in ears, bad balance, mild difficulty swallowing, dandruff, headaches, and maybe thick mucous (I don't know what to compare it to). Two other things: some parts of my body can get very cold and take higher temperatures to warm up. My hands and nose are very susceptible, and my feet are usually freezing. Also, my body has a tough time healing. Marks can stay around for awhile, and some turn purple (lack of heat? blood flow? I'm not sure).If it's not a B12 deficiency, then it could be something very similar. It's worth noting that the fatigue specialist without any formal testing did put me on several different things: L-lysine, magnesium, mitotone (Vitamins C, E, B1, B2, Niacin, alpha-lipoic acid, creatine monohydrate, etc), C caps (Vitamin C, calcium, magnesium, potassium), free form amino acids, and multi-probiotic 4000. I'm not sure of the significance there, but you can look all of them up. None of them worked, of course.richard wayne2b - Is CFS a formal condition with clear, outlined causes and treatments, or is it simply a name given to a list of symptoms? I've never been clear on that. I have had some lab work done, but I don't have all of the tests on hand. I could probably procure them.aquila - I've considered it, although I'm not sure if it's the cause or the symptom. None of the doctors I went to have considered it. Is it something noticeable during sleep? No one has ever pointed it out to me, although people rarely see me sleep (but it does happen).There are a few important things to remember about my sleeping conditions. I have lived with this for about eight years; sleep paralysis only occurred for a period of a few months about two years ago. Hypnic jerks lasted for a period of a few weeks late last year. So in the grand scheme of things these two are somewhat minor.Also, I get roused to a higher state of consciousness very easy. There are a lot of sounds in this house, most caused by other people, and there are maybe five, six hours where things are completely quiet. I do tend to get better sleep during this time with fewer breaks, if any at all, although obviously that doesn't solve the major issues because I still sleep too much and it's still relatively unrefreshing.So it's one of many possibilities to consider. It seems to me that other things are more likely, but I'm not an expert. A sleep study probably isn't possible right now, however.
    blue372 2 Replies
    • January 30, 2009
    • 06:47 PM
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  • Laidbackmonto2: It wont hurt to have your daughters b12 checked. Its only a blood test. Her number should be 500 or higher. Doctors say 300 is borderline. Im proof and a whole lot of others that that is wrong. Below 500 is cause for neruological problems. Read my post on the b12 thread. Its on page 616. I suffered a long time before the b12 thing was figured out. Im mostly healed now, but am thinking of changing serums as per advise on b12 thread. I have my neuro dr. checking all that info out for me. Keep me posted. I care (its got to be tough for a l2 year old to go through all that)
    cyndyd 458 Replies
    • January 31, 2009
    • 00:30 AM
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  • blue372, same for you, get your b12 checked. If its the problem you can go from there. If its not, you can check it off your list. B12 deficiency causes many, many problems. The longer your deficient, the more symptoms appear. Everyone is different. Im pretty much healed, but I have to excercise and stretch to keep muscles and joints moving with less pain. I know what its like to be tired and feel like everyday your high. Keep trying and keep your chin up! Keep me posted. Look at my post (as per above)
    cyndyd 458 Replies
    • January 31, 2009
    • 00:39 AM
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  • The last doctor I went to actually suggested that I get my B12 levels checked, along with folate, thyroid profile, and a few other things. I didn't ever follow through because I was reticent about having more tests done; I had been through so many that I doubted their efficacy, and I didn't have the means to simply throw money at the problem. I think I'll look into it now, however.Laidbackmomto2 - From my experience (which can't trump medical expertise), symptoms can be tough to deduce. A lot of problems can share a variety of symptoms, and certain symptoms will effect one person and not another. It's important to find where the issues are centralized. I've had blood work done, but not all of the doctors knew what they were looking for (once the colonoscopy seemed to rule out ulcers, all they did were general tests). It's incredibly important to have a doctor you trust and who has a great understanding of the specific problems. I've never had to go to the ER, however, although these things can vary in severity.
    blue372 2 Replies
    • February 1, 2009
    • 00:49 AM
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  • blue372; Like I said everyone is different. I had a metalic taste in my mouth. It was never sore or red tho. Symptoms come on slowly with b12 deficiency. Healing is also slow. I think acid reflux can cause weird tastes too. Keep checking. A sleep study might help answer some questions also.
    cyndyd 458 Replies
    • February 1, 2009
    • 01:57 AM
    • 0
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  • I just saw your note to me.CFS doesn't have alab test or x-ray to diagnose it with.It's just a group of symptoms that don't fall into a recognized disease category.It would be helpful to have your lab results.Next time,though,post it so that it triggers a response on my end.
    richard wayne2b 1232 Replies
    • February 1, 2009
    • 02:10 AM
    • 0
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  • Hi Blue! I'd love to hear how you're getting on. I know it has been a long time, but I'm getting pretty desparate so really hoping you can help. I have had very similar symptoms for over a year now. How are you feeling? Did you find out what was wrong? Looking forward to hearing from you
    Watson81 1 Replies
    • February 18, 2013
    • 08:56 PM
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  • My god, you poor thing. Has anyone tested you for food allergies? Some of what you speak of sounds very allergy related. I know I spent 50+ years with your symptoms and more. If you do get tested have them look for long term onset symptoms. Essentially once exposed to your allergy, symptoms do not show up quickly but can show themselves hours, days weeks after being exposed to an allergen and last seemingly forever. I wish you good health, and prayers.
    Anonymous 1 Replies
    • August 24, 2014
    • 09:45 PM
    • 0
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  • All of your symptoms seem to relate to celiac disease. celiac disease is when your body cannot digest the protein found in wheat, barley, and rye. In fact, if you continue to consume gluten, it can cause malnutrition and harm to your small intestine. I recommend going to a doctor soon to get tested for this disease.
    Anonymous 1 Replies Flag this Response
  • All of your symptoms seem to relate to celiac disease. celiac disease is when your body cannot digest the protein found in wheat, barley, and rye. In fact, if you continue to consume gluten, it can cause malnutrition and harm to your small intestine. I recommend going to a doctor soon to get tested for this disease.
    Anonymous 1 Replies Flag this Response
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