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Anyone else experience similar chronic illness symptoms?
May 20, 2014 1:19 PM   Subscribe

Note: I am the patient. Describing the symptoms is pretty difficult task but I will try to do my best. The patient has not felt normal since sometime in October of 2013. The best way to describe it is a feeling as if patient is about to get sick. That feeling as if a sickness is coming on but never really comes on. This feeling is often strongest at night and continues throughout the day and will be gone by night. This toxic/sick feeling that radiates throughout the body seems to come and go at times.

For example some days it will be present for a few minutes and then seem to disappear for five to ten minutes until returning again for a few minutes. The sick feeling is usually about 2/10 or 3/10 in intensity. Aside from this toxic feeling, there are a few other recurring symptoms. The first is a pretty consistent sore throat. It is probably about a 2/10 in terms of intensity usually, so relatively minor, but nonetheless is present. The most troubling and possibly most present symptom is fatigue. The fatigue usually starts in the morning where even 8 hours of sleep is now not refreshing as it once was. The fatigue is generally fairly minor (maybe about 2/10) but the patient has had a episode every couple weeks of extreme fatigue. This fatigue comes on strongly and has forced the patient to bed in the middle of the day despite a full nights rest the night before. The intensity during these episodes is a 9/10. The episodes usually last 2-3 days before the fatigue drops back to it's usual levels of 2/10. They do not seem to be triggered by anything. The patient continues to work out when the fatigue isn't too strong and also run several miles. After exercise, the patient generally feels a little more energized, as opposed to less and also notices no increase in fatigue the day following a work out. The final symptoms are a sneeze and cough here and there, but they are not too common, but present much more than they were before this disease started. There is no fever present.

The patient has met with several primary care physicians, several ID doctors, a GI, and two endocrinologists. All doctors are stumped as all tests come back completely normal (including HIV, lyme, thyroid, mono, etc). The patient has seen a psychologist who has ruled out psychosomatic causes of all symptoms aside from the fatigue possibly.
posted by kvoorhees to Health & Fitness (48 answers total) 1 user marked this as a favorite
 
Trying to solve this mystery illness and doctors haven't been able to help and have told me I'm basically on my own. So any advice would be welcomed. Thank you so much.
posted by kvoorhees at 1:20 PM on May 20


1. how are your vitamin d levels and do you take a b supplement?

2. Sore throat can often indicate GERD, or dehydration, or sinus inflammation. Have you discussed these with your doctors, and are you drinking enough water, have you tried the neilmed system, and have you tried using a mattress protector that inhibits dust mites?

3. have you tried exercise to combat the tiredness?

4. how long have you been referring to yourself in the third person? If I were on ask.metafilter, I might suggest that your real problem lies in not seeking therapy for this issue.
posted by janey47 at 1:23 PM on May 20 [1 favorite]


Have you consulted an allergist? I'm wondering if you're allergic to something you're eating or something environmental.
posted by xingcat at 1:23 PM on May 20 [2 favorites]


Are your lymph nodes swollen when you experience the sore throat?

Do you sleep well? If you have a partner, do they notice you snoring a lot, sleeping with mouth open, sleep apnea, etc?
posted by This_Will_Be_Good at 1:24 PM on May 20


Thanks for the replies and ideas. I had posted this on another website that required third person, sorry lol.
Vitamins are great. I do exercise and it does help some. Drinking plenty of water. Have given up drinking completely and am currently on the paleo diet (so just eating meat and vegetables pretty much).
I have been to an allergist as well and have no known allergies.
Lymph nodes are not swollen at all.
posted by kvoorhees at 1:26 PM on May 20


I am not a doctor.

Are you sufficiently hydrated? I feel kind of like this (if I am understanding your description correctly) when I don't drink enough water.

Edit: just saw your update. nevermind I guess!
posted by melissasaurus at 1:27 PM on May 20


Have you had a sleep study?
posted by kathrynm at 1:28 PM on May 20


IANAD, obviously, but I've got a few ideas. I'm only making these suggestions because they fall in the province of "Can't Hurt, Might Help".

- Some of the most common vitamin/mineral deficiencies in adults are B12, iron, and Vitamin D. Low levels of any of these can cause a myriad of weird, finicky symptoms. As each of these are cheap and readily available, it can't hurt to supplement for a few weeks to see if you notice a difference.

- Allergies can also crop up spontaneously and cause odd symptoms. When I asked my PCP about getting tested for allergies, he said, in effect, "I COULD test you, or you COULD just take some generic Claratin for a few weeks and see if you notice a difference in symptoms" - this made complete sense to me... same outcome, less effort.

- Disturbed sleep can disturb your whole LIFE. If you snore, you may want to change sleep positions, or possibly be evaluated for sleep apnea.

- I go through periods where I need an ABSURD amount of sleep - weeks where 10 - 12 hours is a must for no apparent reason. You may want to prioritize sleep as much as possible for a bit to see if that's what your body needs.

- Look up "tonsil stones" and various methods for extracting them. Poke around in your own personal throat to see if you have any. This one's a long shot, but a possibility.
posted by julthumbscrew at 1:32 PM on May 20 [2 favorites]


Are you obese?
posted by Houstonian at 1:40 PM on May 20


All doctors say I am in picture perfect health. I am probably the exact weight I am supposed to be. I am 31 years old.

Sleep is normal. I do almost always feel pretty sick when I wake up in the middle of the night, making me think it is strongest at night.
I was tested for all allergies and was fine. I am also currently taking lots of vitamins and minerals as instructed by the homeopathic doctor I am seeing that put me on the paleo diet as well. She is the only one who hasn't given up on me, so this is what I'm trying at the moment. Thanks again for all the replies. I appreciate you all taking time to read through all this and offer any suggestions you have. I am lost right now and desperately just want to feel normal again.
posted by kvoorhees at 1:42 PM on May 20


OH, is it possible you are pregnant?
posted by Houstonian at 1:42 PM on May 20


I find diet sodas give me the toxic sick kind of feeling. Quitting caffeine boosted my energy levels. It doesn't make since but felt good.

A psychologist can never 'rule out' psychosomatic problems unless they find a physical problem. It is always a possibility. I'm not saying that it is psychosomatic and I have strong opinions on people being dismissed just because something cannot be defined.
posted by AlexiaSky at 1:46 PM on May 20 [1 favorite]


Haha... that is 100% impossible. I'm a dude.
posted by kvoorhees at 1:46 PM on May 20 [5 favorites]


paleo diet means not much carbs, and fatigue is a type-1 diabetic indicator. That may mean your blood glucose shows normal-ish, since you aren't eating many carbs. Might also mean the thirsty/pee symptoms wouldn't present, since BGs might be normal due to not many carbs coming in.
posted by k5.user at 1:49 PM on May 20 [2 favorites]


Is mold a possible culprit? Is there any dampness in your bedroom? I feel absolutely wretched in similar ways when I find myself in humid climes, or moldy spaces.
posted by thegreatfleecircus at 1:49 PM on May 20 [3 favorites]


Not a doctor, but a feeling of sickness (do you feel that if you could be sick you'd have relief?), worse at night, points to acid reflux to me. Worse after a heavy meal? Try raising the head end of your bed, so you're sleeping on a slope, to see if it reduces the symptoms.

(But hey, you've been talking to doctors, they've probably ruled this out).
posted by Leon at 1:49 PM on May 20 [1 favorite]


I've had this and it was a really really long virus. Periods of getting better, only for it to get worse. Because of the virus I ended up with an additional sinus infection that gave me 1) wicked sore throats in the morning 2) dizzy spells when lying down 3) general fatigue.

My guess would be you are fighting a virus, although Oct 2013 is a really long time.

The other thing would be allergy (dust mites?) or are you consistently eating something that is a little off? Check your mayonnaise expiry date. (no joke)
posted by St. Peepsburg at 1:50 PM on May 20 [1 favorite]


Can you be more specific about what "feeling sick" entails? Do you mean you feel tired, achy, cold-like sick or do you mean you feel like you might throw up sick? Those are very different kinds of "sick".
posted by marylynn at 1:52 PM on May 20


Yes, by feeling sick I mean more like a body ache sort of feeling. My whole body feels sort of worn down and I feel like almost this toxic/sick feeling present.

It's nothing that I'm eating as I've switched diets and foods.

I experience it when I sleep at the GF's house and parent's house or hotels as well. So it's nothing to do with my home I don't think.
posted by kvoorhees at 2:01 PM on May 20


You say "Vitamins are great" but do just you mean that you take them or do you mean that you've actually had a blood test done to see what your vitamin D and B12 levels are?

77% of Americans have a vitamin D deficiency or insufficiency, and correcting that sometimes requires prescription-strength vitamin D supplements. (IIRC, the highest you can buy in the store is 2,000 IU whereas my prescription is for 50,000 IU.) So you absolutely need to get that tested and if you're low ask for a prescription-strength supplement to get it back up to where it needs to be.
posted by Jacqueline at 2:10 PM on May 20


Seconding the suggestion of mold, or maybe have your house checked for carbon monoxide?
posted by LaurenIpsum at 2:15 PM on May 20 [1 favorite]


Acid reflux can give you a sore throat and interfere with your sleep. Either way, you might consider a sleep study. Or a simple elevation of your bed.

Or, frankly, your level of symptoms indicates that you might just...be getting older and be tired sometimes. Not to be dismissive, but it doesn't sound like it's disabling, whereas worrying about it might really cramp your style.

I'd also consider cutting out the "vitamins and minerals", they're not well-regulated and it really is a crapshoot about what you're getting in them.
posted by the young rope-rider at 2:21 PM on May 20


It really is pretty disabling. I have learned to live with it for the most part, but it's a struggle. Good days and bad. The worst are when fatigue episodes occur and I cannot work and have to spend the day in bed. Other days, the constant feeling of being sick makes it hard to focus on work.

The vitamins are all taken according to the plan dictated by my doctor.
posted by kvoorhees at 2:25 PM on May 20


I appreciate that you've found someone who is listening to you and taking your concerns seriously. That is definitely important. Have you gotten a sleep study?
posted by the young rope-rider at 2:30 PM on May 20


I haven't gotten a sleep study, but feel as if I sleep well, as I have the previous 30 years of my life before this. That would explain the fatigue, but not the sick feeling. I will bring this up to my doctor however. Thank you.
posted by kvoorhees at 2:33 PM on May 20


My +1 had symptoms of feeling, as he puts it, "like shit"
Mild headache, tired during the day to the extent that he'd want to take a nap, but as soon as he got in bed, he'd be awake. Right around bedtime he'd feel better. He was run down all the time. And he had trouble thinking clearly. He couldn't focus on reading (not visually, but mentally). He was also getting sick all the time - colds, sore throat, etc.

He went in for a battery of tests and the one that came back positive was for rheumatoid arthritis. Now he's on methotrexate and it basically fixed it. He's had to go off of it occasionally - it doesn't work well and play well with antibiotics - and the symptoms return.

Your symptoms don't totally overlap with his, but when I read him your question, he felt that there was enough similarity to make it worth suggesting checking for RA.

Hope you feel better soon.
posted by sciencegeek at 3:07 PM on May 20 [3 favorites]


I have allergy induced athsma and if I don't take cingulair (montlukast) i feel run down and like I'm getting a cold all the time. It also causes me to snore, which leads to daily fatigue and sore throat. So that covers a bunch of your symptoms.
posted by PSB at 3:47 PM on May 20


I'm agree with sciencegeek. Start ruling out autoimmune diseases. As well as an allergist and a gastroenterologist.

I got 99 diseases, but VD ain't one - so my advice is to check out those three areas. Your symptoms could fall into at least one of these categories.

You'd be amazed at what allergies can do to you, fwiw. I tend to get stuffed up and sinusy, so I get a little lax about my allergy meds. Especially when I watch my brother and dad are sneezing like crazy. But just Zyrtec can change my life some days.
posted by crankyrogalsky at 3:52 PM on May 20 [1 favorite]


How is your mood? This sounds exactly like how I feel when I am enduring a depressive episode.
posted by Hermione Granger at 3:53 PM on May 20


In my experience, chronic sleep loss can absolutely cause fatigue, body discomfort, and a feeling of illness.
posted by moira at 3:57 PM on May 20


I know you said you were tested for Lyme and it was negative, but I think that test is often not accurate...meaning false positive and false negative results are common. I think you should not dismiss the possibility that this might be Lyme. You might want to seek out a doctor who specializes in Lyme. Don't dismiss this possibility based on one negative test result.
posted by Seymour Zamboni at 4:18 PM on May 20 [2 favorites]


I have similar symptoms due to chemical sensitivities. Lysol and windex products make me very ill. Dryer sheets are a nightmare for me. Do your own environmental study. Note when and where you feel fine and when and where you don't. Pay attention to cleaning products used as well as building materials. When I was really bad off, I couldn't go into trailers because they all used a certain type of glue to lay down the carpets that would make me flu like for days after.
posted by myselfasme at 4:38 PM on May 20 [2 favorites]


Fatigue can be a symptom of fibromyalgia or chronic fatigue. Fibro is diagnosed by elimination of other possibilities, and CF is usually diagnosed by testing for Epstein-Barr antibodies (mono). These aren't the only possibilities, but you can look and see if anything rings true.

Don't give up, because this is negatively affecting how you live your life.
posted by annsunny at 4:57 PM on May 20 [1 favorite]


Have the same thing. It turned out to be chronic low potassium due to stage 3 chronic kidney disease. Since I started with a special diet with a kidney nutritionist it has helped tremendously, although I do still have my days. FWIW, I'm an exercise maniac.

I would suggest starting with your GP and have them check your GFR, potassium, electrolyte panel and TSH (for the hell of it to rule out thyroid) and creatinine. Get a referral to a nephrologist and go as soon as you can. They may do a kidney ultrasound and an ECG (as in my case).

I'm now on potassium twice daily for the rest of my life. It's not so bad. If I forget to take it though, man I know.

What I DID learn though is that there is barely any room for fluctuations in potassium before deadly things happen.
posted by floweredfish at 5:00 PM on May 20 [1 favorite]


Thank you for all the replies! You guys are awesome. I will PM a couple of you that I have follow questions for. What I'm learning at this point is it's almost going to be a process of elimination sort of thing, so any new idea I haven't had ruled out to have a doctor check for is worth a try. Thanks again. Keep them coming if anyone has anything new for me to try or consider.
posted by kvoorhees at 5:11 PM on May 20


Have you been evaluated for gastroparesis? That's slow digestion. The keystone symptom is nausea/fullness and a general feeling of "sickness". It can be debilitating when severe. You'd need to see a gastroenterologist for this, and it may require a subspecialist who can do a gastric emptying test for solids and liquids. I work with such a specialist and am familiar with this malady.

The fatigue is not typical, though, unless you are not sufficiently nourished. I only mention it because you seem to be looking for far-flung possible diagnoses.
posted by citygirl at 5:16 PM on May 20


This may sound odd, but that toxic, sick feeling is one that I have when I am suffering from anorexia. Not anorexia nervosa - which is the thing we most commonly associate with the word - but the broader medical definition, which is just concerned with a disinterest in eating. Whenever I think of food when I am having this symptom I feel just... ill and sick. Are you hungry and eating like you used to? Anorexia is a symptom for a lot of chronic conditions. Also, your description sounds similar to something autoimmune to me.

Chronic fatigue syndrome might also be something to look into although it is really just a collection of symptoms (really similar to what you're describing) and is diagnosed by ruling out all of the other possibilities for that set of symptoms - which might be what you face here. You may want to talk to your doctor about chronic fatigue. Cognitive behavioral therapy (CPD) is sometimes an effective treatment for chronic fatigue, so you might look into that as well.
posted by sockermom at 5:24 PM on May 20


Is your life very stressful? I had symptoms like this persistently for over a year, including the sore throat. I was kind of offended when my doctor suggested that it might be psychosomatic. But then when I started therapy for anxiety and started making relaxing and de-stressing a top priority, those symptoms finally resolved.
posted by ootandaboot at 5:26 PM on May 20 [2 favorites]


FWIW, my +1 wasn't sure if he was sick or depressed before he was diagnosed with rheumatoid arthritis. He mentioned this as I was writing my answer above but I managed to accidentally leave it out. He asked me to write a second comment to include this info.
posted by sciencegeek at 6:07 PM on May 20 [2 favorites]


Chronic fatigue syndrome may be a possibility, one of the symptoms is "post exertional malaise", which is a wholly inadequate term for what is often extreme fatigue which follows (by an indeterminate time) over-exertion. Basically this can mean it's not an immediate reaction, but can be delayed by a few hours to a day or more. A push-crash pattern is very common with the disease, and because of the delay, can be hard to identify.

There's a lot of misinformation out there about what the disease is and how to treat it, there are a number of fairly specific criteria (look at the Canadian Consensus Criteria For a good description of specifics), but it's still largely a diagnosis of exclusion (there's currently no diagnostic test) and there's very little in the way of effective treatment (cbt is VERY controversial amongst the patient community).

Because of those two factors I would focus on testing for as many of the other things folks have mentioned upthread before going to far down the CFS rabbit hole. Feel free to Memail me if you want more information from a patient perspective (I'm in remission right now but was seriously disabled for four years).

Best of luck, knowing something's badly wrong with your body and having doctors basically shrug because it doesn't fit a pattern they or their specialty recognizes is maddening.
posted by pennypiper at 8:12 PM on May 20 [2 favorites]


Have you had an HIV test lately?
posted by tristeza at 9:21 PM on May 20


HIV was tested 5 months ago when the symptoms started to pick up. Have been dating my GF for the past 7 months and only had sex with her. And no, I'm not allergic to her lol.
posted by kvoorhees at 9:26 PM on May 20


Also, you'll find it's frequently suggested that depression is an explanation for unexplained fatigue - but while fatigue can be a symptom of depression, fatigue is also a symptom of MANY many other diseases. And I think all to often it can be a fallback "we don't know what's wrong with you so therefore you must be depressed" - which is dangerous if depression is not the root of the problem bc then you/they stop looking for or trying to treat the root cause.

A very casual, but I think very useful "test" is to ask yourself if you were cured tomorrow, what would you do?

The response of someone who is primarily depressed will be very different from that of someone who is primarily suffering from a different kind of disease process (ie what is often talked about as a physical vs a mental illness). From my experience, and discussions with other patients, this is true even when the person is very distressed at the impact the disease is having on their lives.

Just remember, according to the DSM, it takes a lot more than fatigue to diagnos depression. Oh, and, not being able to do something you enjoy because you are sick in bed is not the same thing as not enjoying the things you formerly took pleasure in.

Sorry for the length, I guess it's still a sore spot for me!
posted by pennypiper at 9:32 PM on May 20 [1 favorite]


I am also currently taking lots of vitamins and minerals as instructed by the homeopathic doctor I am seeing that put me on the paleo diet as well.

As suggested by Jacqueline, you should be tested for your levels of Vitamin D (and any other vitamins and minerals your provider wants you to take).

I don't want to derail, but homeopathy is often belief-based rather than research-based, and taking too many vitamins and minerals can be as harmful as having low levels. Testing for all of those should take place before you begin to take them.
posted by miss tea at 2:38 AM on May 21


Not sure if anyone has mentioned this, and again, it's a long shot (because the symptoms don't fit), but at this point, it may be appropriate: you may wish to try an elimination diet (eat nothing but hyperallergenic foods - e.g. lamb, rice, and pears) for a week or two, then gradually reintroduce stuff to see if you notice any changes. Usually food sensitivities result in GI and/or dermatological issues, but again, at this point, it can't hurt to try.
posted by julthumbscrew at 6:09 AM on May 21


I upvote someone's earlier suggestion about acid reflux.

Your description sounds a lot like what I experienced -- I wondered why I kept getting so many small "colds" every month or so, when I used to have the usual 1 or 2 per year. These colds always started with a mild sore throat and would sometimes go away quickly without any other symptoms. I also had the fatigue you describe, though I can't say 100% it was related.

For me this turned to be acid reflux. The good thing about acid reflux is it would be easy for you to rule out -- get a box of Omeprazole (Prilosec) at the drugstore and give it a try for 2 weeks (it's sold as a 14 day course of treatment). If the Omeprazole helps you can follow-up with your doctor.
posted by duoshao at 5:33 PM on May 21


Did the endocrinologist run an ACTH stimulation test? Adrenal insufficiency is not as rare as most doctors think, but because it is considered so rare they don't tend to test for it. Because of this, it is under-diagnosed- it is an easy diagnosis to miss-also auto-immune in many cases. Easy to treat.
posted by claptrap at 1:46 AM on May 22


Your symptoms sounds like me. After being dismissed by doctors as just "stressed" and trying diet changes I just lived with it. Then it turns out I had a heart condition that resulted from my heart not beating regularly. Sometimes, I would have to just stop and go to sleep. Fortunately, I went to the hospital when I began blacking out one night thinking it must be pneumonia. After being hooked up for an EKG, it turned out that it was my heart. It had finally gotten to the point where part of my heart had stopped. I have a pacemaker now and I have never felt so good in my life.

Long story short, good thing I did not die because the diagnosis was by accident. Have them check it out. Good luck.
posted by OhSusannah at 6:17 PM on May 22


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