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Mystery Illness for 8 years

Hi everyone,

New in the medical forum but sadly not new to sickness. I have been sick for about 8 years now and sadly no closer to answers. I have been down a rabbit hole desperate for answers and have received multiple diagnosis's along the way, but no treatment for any of them have worked.

This all started during a pregnancy 8 years ago. Before that I was fine, but the pregnancy definitely triggered something and sadly I miscarried but the symptoms never went away and more popped up over the years. I will write the ones that most bother me now first.

Constant feeling of swaying, bobbing, and like I am rocking boat

Horrible head pressure - Feels like my head is being squeezed in a vice. Had this for almost 8 years. MRI didn't show anything out of the ordinary.

Awful acid reflux, pellet like stools, stomach bloating, pain, tight throat. Now I think about it I had severe bouts of constipation a year before getting other symptoms so can't help but think if there is a huge gut component to this I wasn't aware of.

Allergy like symptoms - sneezing, itching inside of nose, ears and throat, random rashes on face, knuckles, random itchy bumps on legs that come up sometimes and itch for about 20 mins and then disappear.

Sometimes I am really hot and feel like I am burning up for about 20 minutes then it disappears. No allergy symptoms touch these symptoms whatsoever. Tried all over the counter meds with no relief.

Awful brain fog - constantly feel poisoned/drunk and like my brain is poisoned. No relief ever from this in the whole time I have been sick. It is 24/7. Gets worse with sugar, alcohol, coffee and stress.

Light and sound sensitivity - Lights look bright and like my brain can't process them properly. Sounds can make me flinch and feel like they are jarring.

Terrible dry eyes and mouth - doctor suspects sjogrens but I only got this in the last year and a half so I don't think this is a man cause but maybe a byproduct of what else is going on

Burning mouth syndrome. Metallic taste in mouth, severe post nasal drip

Twitching, random flashes of light when closing eyes before sleeping, constant exhausted feeling. Not like I could sleep, more like bodily tired and no rest ever feels enough

Joint achiness and pain, stabbing sensations all over body, back pain, bladder irritation (feels like I have a UTI but I never do when checked out).

Tingling in feet and hands. Sometimes wake up and leg or arm has gone completely asleep.
Shortness of breath - Have woken up gasping before

Appetite swings, difficulty regulating body temp

Feeling like no matter how much water I have it doesn't fulfill my thirst

Sweats at night (sometimes)

Memory impairment

Crawling sensations on skin

I am severely sensitive to all medications and supplements. I can't seem to take anything it making me feel significantly worse.

I try and stay positive but it is so hard living with this with no answers or improvement in symptoms.
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363281 tn?1643235611
Another thought, have you had your progesterone, estrogen, testosterone and DHEA levels checked? Having these hormones out of balance can cause the problems you are having, I ask because you said this happened after your pregnancy, so, your hormones could be unbalanced. It may not hurt to try some "Bio-identical" progesterone cream, this can be purchased at any health food store. "Bio-identical" means it matches your own body's progesterone and doesn't have any fake hormones like the ones the main stream doctors prescribe. It is very safe and can be used by most everyone. Dr Lee, the pioneer in natural hormones has books on it and some info on his web site. Also, please ask for a 24 hour urine specimen test, this will test for the adrenal hormones and is very good in helping to diagnose some of the symptoms you are having if they are due to the endocrine system, that is why I recommend seeing an endocrinologist.
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363281 tn?1643235611
Hello~I am so sorry you are experiencing all these symptoms and no doctor has been able to help.

One thought that comes to mind is either fibromyalgia. lupus, myofascial pain, diabetes or Multiple Sclerosis. Have you been tested for these? Also, food allergies and chemical allergies can sometimes cause the issues you are having.  Also, a condition called "Candida" can cause symptoms such as yours. Candida is a yeast infection in the gut that can cause a myriad of symptoms that can mimic other disorders. A stool and blood test can help to rule it out, but avoiding foods like yeast, wheat and sugar also help.

I would suggest seeing possibly an allergist, endocrinologist or a rheumatologist, these would cover the issues you are having. Also, seeing a good, reputable Naturopath might be of benefit, that was my main doctor back home, they go in to deeper detail regarding the symptoms, order tests that "regular" doctors don't even know about, and will treat very thoroughly areas that need special attention.

I hope you get relief soon. I, too, have had lots of the symptoms you have. My naturopath discovered that I had low blood sugar that would go high when I ate sugar, multiple food allergies, Candida, fibromyalgia and the main cause, stress, man, it can cause all kinds of hassles. Taking good vitamin supplements, eating a good, healthy diet and having regular chiropractic treatment helped immensely.
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way off the beaten track!, BC
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