Look into a rarely diagnosed condition called Nutcracker Syndrome (Renal Vein Compression). It’s a complex, debilitating condition that can cause Chronic Fatigue, Orthostatic Intolerance, POTS, Dysautonomia, Muscle Weakness, Painful Legs, Nausea, Body Aches, Chills, Anxiety and Depression. Very few doctors have ever heard of this condition so it often goes Undiagnosed. Join a Nutcracker Syndrome group on Facebook. The symptoms you’re describing are common complaints among people that have been diagnosed with this miserable condition.
Hello~I am so sorry you are suffering like this. I read JohnnyRockets comment, I think he may on the right track. I know you have all the tests, but, have they tested for hidden food allergies, chemical or environmental allergies. How about the yeast infection called "Candida" all these can cause horrendous symptoms if left to their own devices. Since you have seen all the doctors and had so many test, maybe trying a Naturopathic physician might be a smart move to try next. That was my main doctor back home in the states. They seem to delve deeper into the symptoms and can sometimes come up with ideas and help that the conventional MD's seem to miss.
Also, this is just a thought, but maybe even trying a chiropractor, you may have some misplace vertebrae and they are pinching major nerves, I don't know, I know they have helped others with seemingly impossible issues, mine sure helps me.
I would also try some immune building vitamins and herbs. Echinacea, Elderberry, and vitamins C, D and the B vitamins might be of some benefit along with a good, high potency multi-mineral.
I sure hope you find the help you are needing. God bless you.
I am so sorry about all your health problems.
Yes, something terrible has happened to you indeed.
Mononucleosis, is "usually caused by Epstein Barr Virus (EBV), however, 5% of Mono is caused by Human Herpesvirus-6 ( HHV-6)
You could be suffering the effects of this terrifying virus.
"clinical signs & symptoms - HHV-6 Foundation"
Ruling this out might be challenging, since the medical scientific community is partially in denial when it comes to fully recognizing HHV-6.
I have read recently a book tilted "The Virus Within" and I'm just appalled, with the medical scientific communities internal politics ,biases and shortsightedness, in regards to HHV-6
You will need a very good Infectious disease specialist
or perhaps an LLMD, who would be able to help you rule out this possibility.
The earlier you get this done, the better chances to turn your health around, before it starts affecting your mental capacity deeper.
Please urge your family to give you their unconditional support in this difficult time of your life.
Just ask them, what happens, if they're wrong (which I believe they are) and one day, your health condition has deteriorated to the point, where it's just to late to reverse it?
Are they willing to take this chance?
It would be not just irresponsible and foolish, it would also be devastating for them and you alike!
Everything points to an underlying, undetected pathology so far!
Fell free to show them this post, if needed.
I wish I could talk to them and make them realize that
likely, you can only get better, if they are on the same page with you.
Navigating through the medical system and dealing effectively with doctors, when it comes to complex conditions, is a huge undertaking, for even the toughest
and strongest. And you're far from being that....
Looks like mono triggered POTS (Postural orthostatic tachycardia syndrome).
Here is a list of the common symptoms of POTS (excerpt from the blog Naughty little mast cells)...
"Mental: Anxiety, Brain fog- difficulty concentrating & recalling words/facts/memories, Depression
Gastrointestinal: Nausea, Lack of appetite, Diarrhea, Constipation, Blood pressure and heart rate swings from eating/digesting
Dermatological: Pale skin, Purplish discoloration of skin in hands and feet due to blood pooling, Chronically dry skin, Feelings of pins and needles/shocks/tingling or numbness, Vibration sensitivity
Respiratory: Shortness of breath (easily winded)
Auditory: Sound sensitivity
Cardiovascular: Heart palpitations and high heart rate (worsened by upright posture), Fainting (syncope), Near-fainting, Lightheadedness, Dizziness, Difficulty sitting or standing (orthostatic intolerance), Graying-out upon standing, Raynaud’s phenomenon
A subset of patients have episodes of very high blood pressure. Some may also have episodes of low heart rate (bradycardia).
Vision: Light sensitivity (due to pupil dilation), Dry irritated eyes, Intolerance and sensitivity to contact lenses
Pain: Headaches, Migraines, Chest pain, Aching shoulder and neck pain (coat hanger pain)
Other: Fatigue & Exhaustion, Exercise intolerance, Shaking (tremulousness), Cold hands and feet, Frequent urination, General but strong sense of “feeling awful” or “feeling very wrong” without being able to point to any specific symptom, and more."
I just read Red Star's response and it makes a lot of sense.
I think the key is to get an accurate diagnosis of the underlying cause, which manifests in relapsing mono AND triggers POTS!
The accurate diagnosis though is a huge challenge, since "proving" such an underlying infectious condition either chronic or relapsing is present, is beyond most doctors expertise and scope of practice.
In HHV-6 infections up to 90% of patients with IgG antibody titers of 1: 320 or higher have active infections which can be treated, when results for other infections are abnormal.
Some of these infections are not present in the blood at the time of testing and have gone into the central nervous system, which may render test results more difficult to interpret accurately.
I suggest you look for a good Infectious Disease or Functional Medicine Doctor.
That’s awful! Have you had bloodwork done to check for an adrenal tumor? Also ask about dysautonomia. Hope you find some answers and relief.