Discussions By Condition: I cannot get a diagnosis.

Please help, I've been sick for 1.5 years

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Hattie
  • September 2, 2010
  • 03:57 PM

Hi everyone,

I'm hoping you can offer me some suggestions / advice. I'm about ready to give up. I've been to see a handful of doctors, but they have not yet come up with a definitive diagnosis. The best I got was "probable chronic fatigue syndrome."

My primary symptom is extreme fatigue / sleepiness. I have been experiencing this since December 2008. I wake up tired and never feel refreshed. I can sleep 11+ hours a night and still need to take a nap or naps the next day. I take ritalin and three different antidepressants hoping to boost my energy, but they aren't helping.

My other symtoms are:

Joint / Muscle Pain (particularly in my fingers, hands, shoulders and neck)
Chronic diaherra
Feeling full all the time / no appetite
Acid reflux / periodic nausea and vomitting (once every 3-4 days)
Cold toes
Dry eyes
Dry mouth
Hair loss
Weight gain (40+ lbs)

Prior to December 2008, I had no significant medical issues. I have been diagnosed with Hashimotos disease (thyroid levels controlled by meds), irritable bowel syndrome and depression. I had a colonosopy (upper and lower) in January 2010. It found only gastritis.

I have been tested for the following illnesses, all of which came back negative: Celiac's disease, Sjorgren's syndrome, adrenal failure, mono, lyme's disease, and Cushing's disease. Next week, I am going to have a sleep study to rule out sleep disorders.

Does anyone have any idea what might be causing my symptoms? My doctors and I are frustrated by their inability to find a diagnosis. Any thoughts would be appreciated. Thanks for taking the time to read this.


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3 Replies:

  • Have you been tested for celiac disease? You may be intolerant to wheat and many foods contain gluten, a wheat product.
    aquila 1263 Replies
    • September 2, 2010
    • 05:22 PM
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  • Hi Hattie, i have CFS too and your condition does sound like CFS esp if you get postexertional fatigue/malaise (if you dont, it may not be CFS). Joint / Muscle Pain (particularly in my fingers, hands, shoulders and neck) Most with CFS have some fibromyalgia too, that will cause that kind of symptoms. If you can tolerate it, taking fibromyalgia drugs may help (there is three approved drugs for fibro in America- Pregabalin (Lyrica), Cymbalta, and Savella). With CFS.. antidepressents usually WILL NOT boost energy, so if your doctors have put you onto those for that reason, they are really doing the wrong thing. IF you have coexisting depression, they could help that thou. The Reflux.. I take Nexium (i throw up acid into my mouth at times and Nexium has helped this for me quite a lot) Feeling full all the time / no appetiteAcid reflux / periodic nausea and vomitting (once every 3-4 days) I cant remember what it is called but there is a condition one can have, in which will cause those symptoms due to the stomach emptying too slowly. For more on CFS symptoms i suggest to check out http://wwcoco.com/cfids/bernesx.html . Im wondering why your doctors havent been able to give you a definate diagnoses based on your symptoms and ruling other things out? Having a sleep study done is a great idea. A common non-specific CFS/ME finding is insufficant time in deeper sleep stages, alpha wave intrusion into delta waves with Non Rem sleep. It helps to confirm CFS if you have a few things on tests (eg this CFS sleep one) in which is common findings in CFS. I highly suggest getting yourself to a doctor who specialises in CFS. Note that stimulates arent always a good thing to take in CFS as if they do work and give one more energy.. that often then has the impact of making us afterwards "crash" with it worst. Also it has been recently found that those with CFS are actually carrying a new virus (between 86.5 to 95% of CFS cases). Testing for this virus was only approved and came out last week (currently only one place in America testing but hopefully soon it will be a test anyone can get at their doctors). (XMRV and MLVs) . The authorities do not know as yet if we have this virus due to having a weakness in our immune systemes or if this virus is the actual cause of CFS. http://www.mecfs-vic.org.au/xmrv-virus-and-related-virus-mlv-confirmed-cfs
    taniaaust1 2267 Replies
    • September 3, 2010
    • 11:39 AM
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  • I can see why you take Ritalin if you have a problem staying awake, but antidepressants should negate the affects. Also, most are highly dangerous to mix with a drug like Ritalin. Do you get prescribed all from the same doctor? If not, are the doctors aware that you are mixing pills like this? Many antidepressants are actually used for people diagnosed with insomnia and are used to help them sleep. So, I don't know why you would be diagnosed drugs like that for sleeping too much.
    helpmedocs 6 Replies
    • September 4, 2010
    • 02:14 AM
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