Discussions By Condition: I cannot get a diagnosis.

Strange collection of symptoms... any ideas on what this could be?

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: sweetsoul
  • June 27, 2010
  • 07:06 AM

Over the past 3 weeks I have experienced the following abnormal symptoms:

- Exhaustion (sleeping 8-12 hours a day and still not rested)

- Fullness in stomach

- Nausea and stomach cramps in upper abdomen after eating

- Rapid weight loss (due to not eating from stomach discomfort)

- Loss of sex drive (from high to non-existent)

- Heightened senses to touch and smell.

- Black bruises on legs (now fading)

- Swollen Lymph Nodes (2 separate ones at separate times, only lasted no more than 4 days each)

- Extreme sudden irritability

- Weakness

- Muscle Cramps in Legs causing a slight limp for 2 days

- Hypoglycemia slightly overactive from normal (had a quick black out from 2/3 bag of popcorn)

- Sleep patterns alter between insomnia and excessive sleeping

- Inability to stay awake during the day, frequent naps even with a full night's sleep.

- Frequent intense dreams, wake up with heart racing.



Any ideas on what this could be? Even a collection of multiple things? My doctor wants to do an Adrenal Stress Index test.

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18 Replies:

  • Too early to say yet but it could be sudden onset ME, if it is.. take a lot of care to get enough rest and not over do things cause many dont realise what they've got till it's got much worst. http://wwcoco.com/cfids/bernesx.html
    taniaaust1 2267 Replies Flag this Response
  • Sounds like you could have a malabsorption issue or food intolerance. You may want to start keeping a log of the foods you eat and the symptoms you experience to see if there's a connection. Bear in mind that some reactions can be delayed several days from the time of ingestion. For that reason, it might be helpful to go on an elimination diet and only introduce one food at a time every 3 days. Best wishes!
    Anonymous 42789 Replies Flag this Response
  • That's interesting some of the symptoms are food intolerances and chemical sensitivities. I have hypoglycemia, gluten intolerance, lactose intolerance and chemical sensitivities. And I have Benign Essential Tremor. All of these I was born with.I self-diagnosed (only because occupational therapists do not work with adults) myself with sensory defensiveness. It seemed to explain my massive temperature issues... it can be 76 and I'll be freezing, turn it to 77 and I'll be sweating. Motion feels like torture to me sometimes and depending what it is. I'm extremely sensitive to touch...around 4 or 5 years old I stopped letting anyone touch me, and would scream bloody murder if anyone tried to put tights on me because I said "it hurts!!" I didn't let anyone hug me until I was about 17 years old. I'm also EXTREMELY sensitive to sound and can easily get pushed over the edge.My immune system has always been overreactive to everything. My face used to puff up if I even got in the room with a cat for more than 2 minutes. Now dogs and cats just give me a little asthma. According to the allergy panel I did as a kid and a couple years ago, I'm pretty much allergic to nearly everything. My face can only take 1 exact brand of makeup, everything else makes my face breakout in hives.I looked into the M.E. Disease. It's related to Chronic Fatigue Syndrome? I always thought CFS was a symptom, not a disease. What's the difference between the two? M.E. sounds a lot to me like Sensory Defensiveness. I don't quite understand how it's fatal though.
    sweetsoul 6 Replies Flag this Response
  • That's interesting some of the symptoms are food intolerances and chemical sensitivities. I have hypoglycemia, gluten intolerance, lactose intolerance and chemical sensitivities. And I have Benign Essential Tremor. All of these I was born with. I self-diagnosed (only because occupational therapists do not work with adults) myself with sensory defensiveness. It seemed to explain my massive temperature issues... it can be 76 and I'll be freezing, turn it to 77 and I'll be sweating. Motion feels like torture to me sometimes and depending what it is. I'm extremely sensitive to touch...around 4 or 5 years old I stopped letting anyone touch me, and would scream bloody murder if anyone tried to put tights on me because I said "it hurts!!" I didn't let anyone hug me until I was about 17 years old. I'm also EXTREMELY sensitive to sound and can easily get pushed over the edge. My immune system has always been overreactive to everything. My face used to puff up if I even got in the room with a cat for more than 2 minutes. Now dogs and cats just give me a little asthma. According to the allergy panel I did as a kid and a couple years ago, I'm pretty much allergic to nearly everything. My face can only take 1 exact brand of makeup, everything else makes my face breakout in hives. I looked into the M.E. Disease. It's related to Chronic Fatigue Syndrome? I always thought CFS was a symptom, not a disease. What's the difference between the two? M.E. sounds a lot to me like Sensory Defensiveness. I don't quite understand how it's fatal though.Check the Vitamin B12 Deficiency bulletin board here because they say that taking methylation factors (P5P,l-methylfolate, TMG, methylB12, and a good B complex) and possibly other supporting nutrients (they have a list) will get rid of allergies. Methylation is involved in deactivating histamine. Methylation is also required for people with ME and CFS. It's basic. Good luck
    madanthony 1087 Replies Flag this Response
  • More information might be helpful. I'd be curious to know if this symptoms correlates with new, or change of medications you've started.It's also wise to keep a dairy of sorts to help spot triggers. I recently did a sleep study on a young female that had similar symptoms as you. While her study was running, I goggled the only meds she took (her birth-control pills), and bingo! I had been totally clueless of the extreme complexity and variety of symptoms involved in that little over- looked pill. Might be worth checking out meds.
    Linda5072 9 Replies Flag this Response
  • More information might be helpful. I'd be curious to know if this symptoms correlates with new, or change of medications you've started.I do not take any prescription medications at all. I'm allergic to penicillin and aspirin. Medications always made me extremely sick, so I tend to not trust the pharmaceutical drugs. I took birth control for a short time in 2006 and was off it 6 months later in 2007. It turned my moderate hypoglycemia into a very severe hypoglycemic (I would nearly pass out every hour and a half). It went down to 3-5 hours after I stopped the drug. The only thing I take is 100mg of grape seed extract everyday to control my asthma and allergies.I did have something sort of new happen today though...I wanted to see which foods were bothering me, so I've been eating them separately to see which is aggravating my stomach. I ate some melon on an empty stomach... I felt my stomach swell up and then it just started burning, then cramping... and finally it felt like it was burning a hole in my stomach. It had me curled up in a ball crying. I took some of that medicine my doctor told me to take (chewable licorice root extract), and it wasn't burning that bad anymore. Just a little puffed up and acidic feeling.
    sweetsoul 6 Replies Flag this Response
  • More information might be helpful. I'd be curious to know if this symptoms correlates with new, or change of medications you've started.I do not take any medications at all. Every time I've taken a prescription drug I've ended up worse than when I went to the doctor. The only thing I've been taking is 100mg of grape seed extract every day to control my asthma and allergies.I did notice something earlier this morning though...I wanted to see which foods were bothering me, so I've been eating them separately to see which is aggravating my stomach. I ate some melon on an empty stomach... I felt my stomach swell up and then it just started burning, then cramping... and finally it felt like it was burning a hole in my stomach. It had me curled up in a ball crying. I took some of that Chewable licorice root extract that my doctor told me to take, and it wasn't burning that bad anymore. Just a little puffed up and acidic feeling.
    sweetsoul 6 Replies Flag this Response
  • I took birth control for a short time in 2006 and was off it 6 months later in 2007. It turned my moderate hypoglycemia into a very severe hypoglycemic (I would nearly pass out every hour and a half). It went down to 3-5 hours after I stopped the drug Your issues could be caused by several different things i can think of.. food and chemical intollerances, ME (which usually has food and chemical intollerances just as one of many different symptoms with it) .. or it could even be an issue with insulin resistance. Im saying even possible insulin resistance as that can cause hypoglycemia as the insulin response can over shoot and therefore go and drop the sugar levels right down.. hence then a hypoglycemia response. birth control pills ive read (i think it was just the progesterone) can cause insulin resistance and make it worst. So therefore in one with that issue, the birth control could make hypoglycemia worst. (also carbs may make this issue worst) (i need to go to bed now but i myself are seeing a specialist who specialises in insulin issues and he's got some stuff online.. I'll see if i can find it tomorrow and post it for you (along with finishing what else i was going to say). This kind of issue can also cause food and chemical sensitivities and many other issues).
    taniaaust1 2267 Replies Flag this Response
  • Your issues could be caused by several different things i can think of.. food and chemical intollerances, ME (which usually has food and chemical intollerances just as one of many different symptoms with it) .. or it could even be an issue with insulin resistance.Thank you for your reply. I looked up the insulin resistance and I don't think that fits. I do eat a lot of carbs but I never experience intestinal bloating anymore (after the gluten-free diet). The carbs are the only thing that can keep me full. Chicken and veggies leaves me ravenously hungry 20 minutes later. Also, insulin resistance is pre-diabetic and there's no way I could be pre-diabetic. I eat no sugar, no honey, no fake sugars, no fructose, and none of the other 20 or so forms of chemical sugars. It said obesity is the biggest cause but I'm only 106lbs (5' tall). I've been hypoglycemic my entire life and have been eating sugar-free since 2006. Plus, it still wouldn't explain the severe burning stomach pain from eating melon by itself.I looked up M.E. when the first person suggested it and I don't really understand the disease. I kind of don't think it's a real disease. To me, it sounds like Sensory Defensiveness. People who's bodies overreact to sensory stimuli often develop chemical sensitivities in the area they are sensitive. It's also very common for those people to have hypoglycemia and food intolerances.My doctor put me on some vitamins and supplements last week. Ever since I've been taking them, the black bruises have completely faded away. I've been trying to get sleep like she said. I'm a little more awake now since I don't really do much of anything. She claimed it was either a vitamin B12 deficiency or a vitamin C deficiency in combination with stress from my overactive sensory system. I'm still having issues with my stomach though. I really don't get why fruit is causing me to get nauseous and burning in my stomach after eating it. Melon is a fruit that's okay to eat when you have an ulcer.I noticed something else yesterday. I was trying to move this loveseat that I could always lift by myself. My arms were so weak I could barely grasp it. I tested it by putting my hand around my wrist and squeezing as hard as I could, it felt like a gentle pressure. I work out 2-3 times a week doing muscle exercises, I should be getting stronger not weaker.
    sweetsoul 6 Replies Flag this Response
  • Also today, my joints started aching and feeling stiff (hands and elbows). I took a nap and woke up with a massive headache. My skin feels like it hurts to the touch.Could these symptoms all be caused by high amounts of the stress hormone in my body? I have always been chronically stressed because of the sensory issues.
    sweetsoul 6 Replies Flag this Response
  • Thank you for your reply. I looked up the insulin resistance and I don't think that fits. I do eat a lot of carbs but I never experience intestinal bloating anymore (after the gluten-free diet). The carbs are the only thing that can keep me full. Chicken and veggies leaves me ravenously hungry 20 minutes later. Also, insulin resistance is pre-diabetic and there's no way I could be pre-diabetic. I eat no sugar, no honey, no fake sugars, no fructose, and none of the other 20 or so forms of chemical sugars. It said obesity is the biggest cause but I'm only 106lbs (5' tall). I've been hypoglycemic my entire life and have been eating sugar-free since 2006. Plus, it still wouldn't explain the severe burning stomach pain from eating melon by itself. I'm still having issues with my stomach though. I really don't get why fruit is causing me to get nauseous and burning in my stomach after eating it. Melon is a fruit that's okay to eat when you have an ulcer. Insulin is released when one eats carbs and when one eats fruit as fruit has sugar.. it has fructose that includes melons!!! (many diabetes have to limit fruit due to them being full of sugar). My specialist suspects i have insulin resistance and a severe sensitivity to insulin (on top of having ME) and hence ive been put on a no carb diet (no bread, potatoes etc etc.. and fruit is a real no no). He calls those who have insulin issues as cases of "panadora's box" as it can just cause all kinds of issues. http://www.agale.com.au/CFS.htmhttp://www.agale.com.au/PANDORA.htm I get my 2 hr blood test insulin testing results (i had to fast 12 hrs, then drink something given in clinic.. then my bloods were taken 3 times over the 2 hrs)... next time i go to doctors so it will be interesting to see. or your issue is (esp if you dont have period issues eg PCOS which predispose to insulin resistance), more likely to be ME (also called Chronic fatigue immunity dysfuction syndrome esp since you are getting more of the usual symptoms of it.... The following has a list of symptoms of it based on studies http://wwcoco.com/cfids/bernesx.html *Note.. the CFS/ME/CFIDS field is very confusing as there are about 9 different diagnostic criteria which has been used.. different countries use different criteria and some countries are so different in how they diagnose eg in england someone with just chronic depression may end up with a CFS diagnoses and those who meet the canadian consenses defination may be excluded from the english defination due to having to many neurological issues etc. With the Canadian defination (which many other part of the world use including most doctors in Australia) those whos issue is just depression dont end up with a CFIDS/CFS diagnoses. http://www.cdc.gov/cfs/cfsdefinition.htm (just a wee part of the controversy) To further confuse things.. even the CDC may imply ME and CFS are the same thing one moment but they actually also say they are different things (ive seen that twice on their site!!). I'd say for simplisitities sake that you have CFS.. of probably the ME variety. CFS/ME. Anyway ..here is the general info on the CDC site.. i suggest for you to look at it as you will see it fits http://www.cdc.gov/cfs/cfssymptomsHCP.htm http://www.cdc.gov/cfs/cfsdiagnosis.htm oh i forgot to say to you that i think it was about 50% of ones with CFS/ME have fructose malabsoption issues (according to a study that was done)... and hence fruit (melon) can cause issues. ME people also often get hypoglycemia ......... Dont panic it's too early yet to know if you have this very bad illness.. but from your symptoms it appears it could be that.(note that CFS people are asked not to donate blood by the bloodbanks (all about the world) due to the connection which is being found with the XMRV retrovirus which is currently under investigation)
    taniaaust1 2267 Replies Flag this Response
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  • Insulin is released when one eats carbs and when one eats fruit as fruit has sugar.. it has fructose that includes melons!!! (many diabetes have to limit fruit due to them being full of sugar). My specialist suspects i have insulin resistance and a severe sensitivity to insulin (on top of having ME) and hence ive been put on a no carb diet (no bread, potatoes etc etc.. and fruit is a real no no).Do you have to eat like that the rest of your life?? I feel for you. I would starve to death. lol Can you eat beans? No potatoes??? I'm eating a baked one with butter and cheese right now. lol No carbs and only protein make me SICK. I tried eating meat for breakfast once and my blood sugar spiraled out of control (just like it did if I ate oatmeal with a ton of agave nectar). I eat a GF cinnamon raisin roll with non-dairy butter for breakfast. I had to stop that recently though, the raisins were making me nauseous. I switched to a GF multi-seed english muffin with non-dairy butter and I've been doing much better in the mornings. I even ate an organic gala apple with peanut butter today. Speaking of which, my joints aren't hurting anymore... I don't know if it was the apple or the potatoes but I feel fine after eating. I'm real sensitive to sugars so I can only eat one serving of fruit a day... or one GF SF DF chocolate chip cookie a day (even though the serving is 2 because of their tiny size). I eat one everyday though! haha!My doctor back in 2007 told me I have a VERY fast food digestion metabolism, hence why I get SO hungry all the time. Anything that goes through the stomach quickly... like chicken and non-starch veggies. Come to think of it, I tried following a little bit of the Gerson diet once. I ate potatoes and carrots for protein (no meat) and I felt seriously great! My vision became crystal clear. I remember driving down the road in amazement because I had never seen so much visual detail in my life. Starch makes me feel the best.Come to think of it... I didn't start experiencing symptoms until I made beef & bean chili one week and pretty much spent the whole week eating it. It was organic free range no-antibiotic beef. I can only tolerate chicken once a week or twice a month. It makes me SOOOOO hungry. My body starts feeling really gross if I eat meat more than once a week.Is there anything that's the opposite of a Fructose Intolerance?? Where you need a ton of carbs?
    sweetsoul 6 Replies Flag this Response
  • Over the past 3 weeks I have experienced the following abnormal symptoms:- Exhaustion (sleeping 8-12 hours a day and still not rested)- Fullness in stomach- Nausea and stomach cramps in upper abdomen after eating- Rapid weight loss (due to not eating from stomach discomfort)- Loss of sex drive (from high to non-existent)- Heightened senses to touch and smell.- Black bruises on legs (now fading)- Swollen Lymph Nodes (2 separate ones at separate times, only lasted no more than 4 days each)- Extreme sudden irritability- Weakness- Muscle Cramps in Legs causing a slight limp for 2 days- Hypoglycemia slightly overactive from normal (had a quick black out from 2/3 bag of popcorn)- Sleep patterns alter between insomnia and excessive sleeping- Inability to stay awake during the day, frequent naps even with a full night's sleep.- Frequent intense dreams, wake up with heart racing.Any ideas on what this could be? Even a collection of multiple things? My doctor wants to do an Adrenal Stress Index test.If you have taken the Gardasil vaccine-= =search the internet for support groups ( google or yahoo groups with Gardasil in the name-) otherwise I would say you are eating aspartame or sucralose/ splenda= ditch them asap !
    founddog 188 Replies Flag this Response
  • Also today, my joints started aching and feeling stiff (hands and elbows). I took a nap and woke up with a massive headache. My skin feels like it hurts to the touch.Could these symptoms all be caused by high amounts of the stress hormone in my body? I have always been chronically stressed because of the sensory issues.It's extremely interesting to me to do searches on all of your symptoms and those that comment. I'm a sleep technologist that has multiple personality disorder. I kinda stumbled into this forum thinking everything was a sleep or MPD problem. But boy has my eyes been open! This all has overwhelming to say the least, and it is really helpinge too. The symptoms I'm reading here are no laughing matter (I know everybody knows that). Even though I feel so unquailified, I feel everybody together are contributing a very crucual piece to this critical puzzle.I'm positive I have a B 12 deficiency after reading these posts. Thank you.Now sweetsoul, it would be wonderful to be able tie all your symptoms together, but it's possible you could be dealing with more than one cause. Have you considered gall-bladder disease, hypothyroidism, and maybe narcolepsy?
    Linda5072 9 Replies Flag this Response
  • It's extremely interesting to me to do searches on all of your symptoms and those that comment. I'm a sleep technologist that has multiple personality disorder. I kinda stumbled into this forum thinking everything was a sleep or MPD problem. But boy has my eyes been open! This all has overwhelming to say the least, and it is really helpinge too. The symptoms I'm reading here are no laughing matter (I know everybody knows that). Even though I feel so unquailified, I feel everybody together are contributing a very crucual piece to this critical puzzle.I'm positive I have a B 12 deficiency after reading these posts. Thank you.Now sweetsoul, it would be wonderful to be able tie all your symptoms together, but it's possible you could be dealing with more than one cause. Have you considered gall-bladder disease, hypothyroidism, and maybe narcolepsy?Also I forgot, if you have time, could you make a list of all your symptoms (in the order that they've occurred, if you can remember), then put beside that symptom a number that scales the intensity of it on a scale of 1 to 10 (10 being the most bothersome or debilititing)?
    Linda5072 9 Replies Flag this Response
  • Also today, my joints started aching and feeling stiff (hands and elbows). I took a nap and woke up with a massive headache. My skin feels like it hurts to the touch.Could these symptoms all be caused by high amounts of the stress hormone in my body? I have always been chronically stressed because of the sensory issues.Ditch the aspartame and or sucralose /splenda from your diet!!!!! FATAL and dangerous!!!!research them and you will see what I mean.
    Anonymous 42789 Replies Flag this Response
  • What you are describing sounds like adrenal fatigue syndrome. If you have been under a lot of stress, mental (to the extent that you were sleeping poorly, hyper-vigilant, and irritable) or physical (such as a long-term illness like lime disease, excessive exercise, or heavy metal/chemical poisoning), either kind of stress can make your body produce stress hormones in excess, particularly cortisol. Swelling of the face and abdomen, chronic stress and fatigue, developing new allergic reactions, and soreness in joints/elbows are all signs of a possible disturbance to your cortisol levels. You may want to suggest this to your doctor, for a professional opinion as to how you can get your adrenal levels back to normal.
    Anonymous 42789 Replies Flag this Response
  • Do you have to eat like that the rest of your life?? I feel for you. I would starve to death. lol Can you eat beans? No potatoes??? I'm eating a baked one with butter and cheese right now. lol No carbs and only protein make me SICK. I tried eating meat for breakfast once and my blood sugar spiraled out of control (just like it did if I ate oatmeal with a ton of agave nectar). I eat a GF cinnamon raisin roll with non-dairy butter for breakfast. I had to stop that recently though, the raisins were making me nauseous. I switched to a GF multi-seed english muffin with non-dairy butter and I've been doing much better in the mornings. I even ate an organic gala apple with peanut butter today. Speaking of which, my joints aren't hurting anymore... I don't know if it was the apple or the potatoes but I feel fine after eating. I'm real sensitive to sugars so I can only eat one serving of fruit a day... or one GF SF DF chocolate chip cookie a day (even though the serving is 2 because of their tiny size). I eat one everyday though! haha! My doctor back in 2007 told me I have a VERY fast food digestion metabolism, hence why I get SO hungry all the time. Anything that goes through the stomach quickly... like chicken and non-starch veggies. Come to think of it, I tried following a little bit of the Gerson diet once. I ate potatoes and carrots for protein (no meat) and I felt seriously great! My vision became crystal clear. I remember driving down the road in amazement because I had never seen so much visual detail in my life. Starch makes me feel the best. Come to think of it... I didn't start experiencing symptoms until I made beef & bean chili one week and pretty much spent the whole week eating it. It was organic free range no-antibiotic beef. I can only tolerate chicken once a week or twice a month. It makes me SOOOOO hungry. My body starts feeling really gross if I eat meat more than once a week. Is there anything that's the opposite of a Fructose Intolerance?? Where you need a ton of carbs? Im currently like the man who's about to be hung and who is having his last meal. Seeing ive been told not to eat carbs, i've been eatting them like crazy as once i get those insulin test results back im worried i may be doomed LOL. (Ive been quite sick the past week and im hanging off of going back to doctor as im concerned about what the results say, i dont want to have to avoid carbs for rest of my life!). Nope.. ive never heard of any issue where one needs to eat a heap of carbs... just for some hypoglycemia.. frequent meals of complex carbs can be important. It all depends on why you have got hypoglycemia...... for cortisol (adrenal issues) there is tests for those. Not something which should just be assumed (ive noticed that some assume they have this issue and dont get tested).
    taniaaust1 2267 Replies Flag this Response
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