Feeling quite ill for over a year - not yet been diagnosed.
My symptoms began suddenly in May of 2020. BTW, I am in my early thirties. I was taking prescription Adderall to help with my ADHD and to do better in my graduate school studies. as directed and had been for approx. 4 months and when I took the second pill of the day in the afternoon, I felt an intense malaise feeling and impending sense of doom sensation like I had never felt before. My left arm also started having this weird aching sensation. I stopped taking the medication due to this bad reaction. Though I stopped taking Adderall, these feelings returned and grew more and more frequent as the weeks went by. I started having weird electrical pains in the left side and center of my chest while feeling malaise and jitteryness everyday for most of the day. I also started having frequent soaking night sweats, my heart would have big thumps and skip beats, and I at first had insomnia where my body only wanted to sleep a few hours rather than my normal 9-10 hours.
I went to the emergency room at different hospitals on numerous occasions and everything was normal – ECG, chest X-ray, and bloodwork. I have seen numerous specialists for about a year and a half with no serious diagnosis.
I have been dealing with this illness for over a year and a half and it has "evolved" into the following symptoms:
1) I am now having frequent muscle twitches/fasculations all over my body with a constant twitching eye lid.
2) I feel like I am in a dream, like nothing is real, like my consciousness has been decreased by 50% or more. I do not feel right at all.
3) I feel really intense malaise/illness where I don't like walking around much or going outside. Nature and outdoors makes me feel nervous and sick where when I was normal I loved the outdoors. My thoughts go to all of the death that occurs naturally in nature when I go outside. It is a sickening feeling, and I don't know how to describe it, it is as if my brain is just so sick. The Earth and nature makes me feel an impending sense of death and I have never had thoughts like these before in my life.
4) I have panic attacks and heavy anxiety without a cause. I can feel calm one minute and the next I feel intense adrenaline panic attack feelings mixed with an impending sense of doom and death. The anxiety is not from anything stressful going on but feels like some sort of chemical reaction/process that has gone awry in my body.
5) Frequent night sweats. I wake up having to change my clothes and sheets while feeling intense malaise.
6) Electrical shooting pains occur in different parts of my body at different times. They can be in my chest, my legs, my arms, my face, skull, just anywhere. They are most frequently in my chest.
7) I can't concentrate to make decisions or even watch much tv. I just spend the day in my bed trying to concentrate and watch tv to get my mind off this awful condition.
8) The inner side of my fingers have turned yellow along with the soles of my feet. Also part of my eye is yellow.
9) One of my latest symptoms is sleeping over 12 hours but still feeling sleepy and fatigued. I feel constantly tired.
10) My latest symptom is not feeling hunger hardly anymore and I drink protein shakes to desperatly keep my weight up because I keep losing weight – I went from 178 lbs when this illness started to 139 lbs.
11) I have delirium where I can't make sense of my thoughts and they are jumbled up like in a dream.
12) I smell phantom odors that are what I remember smelling when I was a child. Like the odor in my childhood home.
13) I have a sensation that an electric current is running through my body.
14) Soon after I eat a meal, my heart beats very hard.
15) I have in the past several weeks having recurrent shortness of breath where I can't breathe well and have "air hunger." This causes me anxiety.
Does anyone have any idea what I should do or what is going on with my body? I am so tired of feeling this way and I was hoping this would all go away on it's own. Why can't my body heal from whatever this is? It has been going on for nearly a year and a half. I am not dying or have a terminal illness, right?
I would really like a response and some advice on what to do or possible diagnosis.
Thanks for your help.
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Welcome @cosimax505. That is a comprehensive and complex list of symptoms. I can certainly understand why you are perplexed and seeking answers. As you probably know, Mayo Clinic Connect is a community of patients like yourself. Naturally, we can't provide a diagnosis, but hopefully we can help guide you to questions you can ask and possibilities to pursue.
You mention that you've seen many specialists over the past year and a half. What specialists have you seen? What has been ruled out? Have you been to a large medical center like a university health network?
I first went to emergency rooms where they checked EKG, chest x-ray, and blood test for troponin/cardiac enzymes. I went to the ER dozens of times and they were always normal. EKG did not show up anything, nothing showed up abnormal on chest x-ray, and blood tests were always fine.
One hospital had chest CT scan to check for pulmonary embolmism – this was all clear. Hernia showed on scan but was told many people have this and mine did not look to be causing any issues according to doctors.
I then was admitted to one hospital for a cardiac stress test/echocardigram. This turned out normal.
I then saw another cardiologist where I had a full echocardigram done – normal except for mild regurgiation in 2 heart valves but cardiologist said this isn't really anything to be concerned about. Heart structure looked fine – no sign of serious heart disease.
I then had a CT scan of the heart done (angiography) and this was perfect with nothing in my arteries and no sign of heart disease. Heart structure appeared normal on this scan.
Wore heart monitor for several weeks with nothing serious detected; only tachycardia was picked up some of the time.
My mother had me go to multiple thyroid specialists including Mayo Clinic thyroid doctor where multiple thyroid blood function tests were performed along with 2 ultrasounds – thyroid tests were all normal with nothing abnormal found on my thyroid.
I went to ENT doctor (ears, nose, throat) – tests he performed while there were normal.
Went to dermatologist – I have molds since childhood that will later be removed but dermatologist said there is nothing medically concerning, so this test was fine.
Have visited dentist – no cavities – teeth appear fine.
Been to one neurologist – physical test done while there was normal. Then had EEG later performed which turned out normal.
Primary doctor has done blood tests to check for autoimmune diseases – normal. Inflamation test – normal. Vitamin D checked was low one month but Mayo Clinic blood test showed it was now in the healthy range. Vitamin B12 is normal. Though one time in hospital it was above the normal range for some reason even though I wasn't taking any B supplements at the time.
No blood found in stool.
Blood clot tests are always in normal range.
Lyme disease test – normal at primary doctor, went to integrative doctor with more comprehensive laboratory test which was also normal. So I think I can rule out Lyme disease.
Celiac disease blood test – normal.
Epstein bar virus – past infection, but not active, so normal.
Went to hepatologist – liver function tests in past emergency room visits and performed by hepatologist are always normal. Hepatologist checked for Hepatitus A,B,C – all negative. Iron saturation and more in-depth liver tests – all normal. Ultrasound showed hepatic statosis or fatty liver.
Ultrasound of pancreas appeared normal along with right kidney. Pancreas enzymes in normal range.
Hepatologist tested for copper levels in urine – high levels can indicate liver disease. Mine was lower than normal.
Ammonia test in ER visit was normal.
Hormones like testoterone and estradiol tested and are normal. Only abnormal one was DHEA which was 579 when normal range should be under 400.
Integrative doctor tested CD8/CD57 for immune system which was normal but in lower range of normal.
Emergency room visits and other doctors always showed kidney function to be normal. EGFR is fine.
CBC blood tests along with metabolic blood tests are always normal in the dozens of times I have been to ER and tested through primary doctor.
Glucose levels are almost always in the normal range, and Mayo Clinic confirmed it is not diabetes.
Had upper endoscopy performed by digestive doctor – esophagus is fine along with stomach. Nothing other than minor irritation in throat showed.
Was borderline anemic for a little while in 2020 probably from having so many blood tests, but all blood tests in 2021 show normal iron and hemoglobin, so it is not anemia causing my symptoms.
Urine daily output checked for several weeks – always in normal range.
Urine tests at ER are almost always normal except one time in 2020 a small amount of bilirubin was found in urine, but doctors said this is nothing to be concerned about. No protein found. Ketones found but this was because I wasn't eating much. Overall, normal urine tests.
Blood pressure tests at almost all ER visits and in-patient hospital are almost normal except when I am very nervous.
Blood oxygen saturation range is always 96%-100%. Most commonly it is at 97% and I have tested it regularly at home with a pulse oximeter.
Body temperature is always in the normal range, as I have never had a fever throughout any of these symptoms.
I have had two COVID tests – the second test was in hospital where they stick the swab way done your nose. Both tests were negative for COVID.
Tests for illicit drugs and tylenol, aspirin etc. is negative.
BMI (body mass index) is in normal range – 5 foot 8 inches and now around 145 pounds.
So does anyone have any advice on what you think I should be tested for next?
Thanks for your help.
I also had cholesterol blood panel done and about all tests were in the ideal range.
Potassium and magnesium were tested several times in emergency rooms and they are normal.
Hi, I am sorry you are going through this. Your symptoms sound eerily similar to the ones I am currently experiencing, which began with a similar feeling of doom shortly after a routine arm surgery 3.5 months ago. I’ve had many of the same tests which have also come back normal, with a couple irregularities (low b12, mild anemia, etc) but nothing definite. As such, I am still working through the process so I can completely understand your frustration. I can also relate to how life altering this experience is as I have been unable to return to work except for a few hours here and there. Interestingly, I was also prescribed on adderall for concentration/energy issues several years ago, though I have been off of the medication for approximately a year. It sounds to me like your nervous system is severely out of whack, which is what is the doctors believe is happening with me. Some of your symptoms point to parasympathetic overload, and some to sympathetic overload. I have had events that feel very much like terrible panic attacks (these were 24/7 for the first few weeks post surgery- I literally figured I was going to die) but my heart rate actually went down during the events instead of increasing. I also have extreme muscle twitching and terrible jitters/nervousness with a really horrible sense of unease for much of the day. I am 48 years old and have no prior history of anxiety/depression/panic so it has the doctors perplexed. Have you been to a psychiatrist for evaluation? I have and was told my issues were medical and not to take any antidepressants. However, I am interested as to whether you have tried any SSRIs? The reason I ask is that I have read SSRIs help to modulate the vagus nerve, which is a main transporter of serotonin. May be with a shot. I can n tell you what I am trying, I have been getting acupuncture which has helped somewhat though is certainly not a miracle cure. I also visited an integrative health specialist who put me on meds and supplements to get my hormones and vitamins into the optimal range. Just because a lab value is “normal” doesn’t mean it is optimal. Each value is highly dependent upon what is really normal for the individual, so an integrative health specialist can help you get things back in balance. As for me, I’m taking the long approach of getting my body in balance, trying to decrease stress as much as possible, and setting my body up to heal on its own. The thing to remember is the nervous system takes a very long time to repair itself so we have to be patient. One final question, have you had an ultrasound of your gallbladder or a HIDA scan? I ask because you mentioned some jaundice. My endoscopy was mostly normal as was yours, but an ultrasound showed a sludgy gallbladder and a HIDA scan showed a very low (16%) ejection rate. I’m nervous to schedule the surgery as my last surgery is what kickstarted all of this for me, but the surgeon I met feels like the gallbladder could be causing a lot of these issues. However, the other docs I have talked to have laughed this off. One thing I’ve learned researching it is that a low ejection rate can make food sit in the stomach longer, which can cause gas build up in the stomach. If the gas gets to be significant, and if it gets trapped in the upper gi tract, it may be possible it is causing some of our symptoms. It sounds crazy I know, but there may be several factors at play causing an out of control nervous system response where every sensation is causing an overreaction in your brain. Good luck and please keep us posted!
Hello @cosimax505, welcome to Connect. I'm sorry you are hurting. I came here too when I was stressed, frustrated and not knowing answers to health concerns, nor did doctors. Thank you for such a complete, detailed list of your search. It's pretty scary when your life is invaded with uncertainty.
I'm no doctor but your overwhelming description fits well with Central Sensitization Syndrome (CSS). CSS is an upregulation of the central nervous system which can affect your whole body from chronic joint, muscle, nerve pain to sensory issues from sight, sound, smell, touch, causing a multitude of symptoms from gut, esophagus, heart etc…
When a body is under such stress and distress, it goes into a fight or flight mode. The parasympathetic nervous system goes into overdrive. It all stems from the brain and antagonizes the body.
There is help for this. I'm attaching a video by Mayo Clinic's Dr. Sletten on Central Sensitization:
Perhaps something will resonate with you. If no firm diagnosis presents itself, you will have this in your arsenal. Do you mind letting me know your thoughts after watching?
HI Coach T. I'm happy to read that you are working to calm your system down. Good for you. I hope your feeling positive benefits. Best of luck!
Thanks so much for advice everyone.
CoachT you asked about gallbladder. I had a RUQ (right upper quadrant) ultrasound and my gallbladder appeared normal with confirmation of no gallstones. Nothing remarkable showed on my gallbladder. I forgot to mention gallbladder result in my earlier post b/c I have had so many tests performed over the past year.
The abnormal tests I have had are fatty liver (hepatic steatosis), high b12, slight bilirubin in urine one time (all other urine tests were normal), mild regurgitation in 2 heart valves, mild henial hernia in stomach, and a slight elevation of DHAP hormone. My GP and other doctors said these should not be causing the kind symptoms I have or really any major symptoms at all.
I also wanted to mention that I cannot take Tylenol or many OTC drugs now or really any medications at all. When I take something like Tylenol, I get upper abdomen pain, I also get the panic attack/impending sense of gloom/doom sensation like I am going to be sucked out of the Earth into the afterlife, and I have nerves firing all over my body. I feel intensely gloomy and sickly for days afterward. I had the same sort of sensations when I tried CBD oil to try to alleviate my pain. It is like my body is poisoned when I take any drugs and they just don't seem to process or metabolize in my body. I also want to mention my stools are not dark brown like they used to be but are now always clay colored as if there is no bile in them. They are especially light when I take any drugs/medications. My heptaologist did an in-person, physical test with my arms, hands, and reflexes to check for hepatic encephalophy and it was negative – I don't have the flapping hand/wrist tremors associated with this condition.
I am scheduled to have a liver fibroscan this month, a more in-depth look at my liver, and will have more hormones tested by my GP. I also want to have heavy metals tested. Perhaps exposure to some kind of toxic metal caused some of my problems.
I will look into CSS as it does fit alot of what I have gone through. Thanks for the information and links.
That’s interesting regarding the sensitivity to medications. I have the same exact issue since my episodes started after surgery. I have been unable to take any medications other than ibuprofen, and even the slightest amount of caffeine sent me through the roof for the first two and a half months. On two occasions I tried to have a drink of alcohol, once to see if it would help and just the other day because I was offered a drink from a friend and was feeling pretty good at the time. On both occasions the single drink brought on the exact same feelings. My guess is this has to do with our nervous systems being in complete meltdown mode, and any change in sensation brought on by the meds, caffeine etc cause an overreaction and sends panic messages to the brain. That’s only a theory though. I’ve also had severe muscle cramps and spasms, as well as shooting pains and twitches. In my case, I’ve had the HIDA showing my gallbladder isn’t working much at all, the severely low b12, a high complement total and just the other day, anemia. The anemia is odd as it was borderline prior to starting b12 shots but has actually dropped quite a bit since taking the shots. The doctors suspected it was low due to the b12, so it is definitely surprising. I’m sorry you are dealing with all of these issues without an easily identifiable cause. I can definitely sympathize as I know how completely debilitating and consuming that they are. I am thinking that in my case, I have several things going on at once that have just raked havoc on my system. For instance, low b12 prior to being administered nitrous oxide probably caused my neurological symptoms (neurologists agree with this), while my daily morning nausea may well be from chronic gallbladder disease, and extreme fatigue from the anemia. As with your case, the question is what is the root cause? I think we have to keep pushing until we find out. Luckily I had a psychiatrist who encouraged me to keep pushing because he believed that my issues were medical and not psychological (after my original primary ran a blood test and CT scan, then told me it was psychological so good luck…). The bottom line is that we know our bodies and if you truly feel that something is not right, you need to keep pushing for answers and not get discouraged. I never gave much thought to my health prior to my experience with this, but I am really doing everything I can to not only look for answers, but to balance my body and optimize what I can influence to prepare my body for healing. I’d recommend you keep pushing as well, but also focus on stress reduction through massage, acupuncture, diet, light exercise, going for walks etc. After doing these things for three months, I do feel better despite my symptoms persisting.
@cosimax505 I have had many of those symptoms the last year- Have you been checked for a urinary tract infection? I did with no symptoms that spread through the body. Walmart has AZOS UTI strips you could check yourself before calling Dr. Have you had a stool sample or colonoscopy done? Are you low on iron? Are you taking a multivitamin? Calcium, magnesium, zinc? Vitamins helped me. I had pounding heart rate, phantom smells, feeling faint, difficulty walking and more. I’m on the mend now with no real answers.
Don’t give up! Be persistent.