In July I weighed 126 lbs. I was a 5'2" 38 yr. woman with a healthy muscular build with Narcolepsy, REM Sleep Disorder, and arthritis all in managed control since 2005. In April I was diagnosied with and started treatment for Fibromyalgia, and recently (2 weeks) learned there is damage to the nerves in my cervical spine. In August I started having major problems - severea nausea, vomiting, pain in the upper center quadrant of my stomach. I could not eat solid foods or drink thick liquids; sometimes the smell of food made me gag. I saw a ton of doctors, I was not able to complete a HIDA Scan (no cck due to no dye in the gallbladder), I also had no emptying during the gastric stomach emptying scan. A colonoscopy, endoscopy, upper Gi, and a slew of blood work were all fine aside from malnutrition. I am on short term disability from work (with 5 wks left of FMLA). I have a tentative diagnosis of gastroparesis. I have started to back-off all my meds that are not necessary (off Savella, off Nuvigil, off all GI related drugs). I only take my REM sleep meds. I have lost so much weight I can't DO anything, I am too weak. I weigh 100 lbs. (fully dressed) and am pinning up my pants which are a girls size 12. I need to stop losing weight. My wedding rings are on a chain around my neck. I miss food - I want to eat. I have started to force myself to eat no matter what - pain or no pain. But I still am losing weight. I am now also sick with a cold that does not seem to be going away - however the doctor doesn't seem concerned aside from preventative antibiotics to keep me from getting an infection. I keep getting shoved from doctor to doctor while my body is feeding on itself - How much is ENOUGH? I AM SCARED!
1 Feb 2010
I'm sorry you're losing weight. I've lost 24 pounds in 6 mos. I haven't got on the scale, but I did step down 1 pants size, and 2 sizes in my underwear. I don't want to lose any weight because I look like a haggard old hag :)
Has anyone checked your thyroid? You need at least a TSH and free T3.
I've had problems with my thyroid levels going up and down since surgery in 1971. Some docs have tunnel vision, and won't investigate beyond their expertise. I advise you to ask to have your thyroid checked.
2 Nov 2009
Hi rfoeh171, In my opinion, you past the "enough" line quite awhile ago. You did not mention if you are seeing a doctor in a private office or hospital setting. If I were you, I'd start doing some very serious online research and look for the most progressive hopital (possibly teaching) that I could find. Do you live close to a city? You obviously are not getting what you need through the resources you have. You're going to have to think outside the box and explore new options. The longer this continues, the harder that will become to do for various reasons (such as pain, depression, weakness, etc.). Move on it now! Take care, keemo7
2 Nov 2009
Hey, I have had the same problem I am 23 and went from 142 to 123 at 5'6. my nutritionist says that I shouldn't loose any more weight she has me on a few different protein supplements and a liquid diet because I cant take solids at all. maybe try adding a protein powder to some yogurt take vitamins and avoid fat and fiber.. I also suggest you see a nutritionist. hope you feel better.
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I suffer from narcolepsy/cataplexy now for 4 yrs, have been on so many medications from specialists?
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3 answers • 23 Mar 2010
and then jsut stooped losing, now i have gained and dont like it, dr says its stress, not so sure
1 answer • 17 Jan 2011