Need advice on multiple symptoms (long post)

Posted by witsend000 @witsend000, Jun 7, 2022

I have had multiple symptoms for many years and there has been no definite explanation of cause. I would very much appreciate any suggestions or advice on what could be wrong or tests I should ask for. Thank you.

I have had multiple blood tests, stool and urine tests, chest x-rays, a 24 hour heart monitor, and multiple EKG’s. Nothing useful has been found. I am currently on lexapro. Doctors seem to shrug me off or minimize the severity of effect it’s having on my life. They seem patronizing at times using terms like: high strung, overly sensitive or that it’s “just anxiety or depression”. I know I tend to be pessimistic and anxious but, i really feel like there is a physical, correctable cause and I need to find it. In addition, my mom and sister have also had many of the same symptoms for many years.

I will try to be as brief as possible. I am a 37 yo female. As a child I feel I was healthy and averagely active; spent the whole summer outside. Had no allergies (other than from mosquito bites, but who doesn’t?). If I got sick I did the typical: rest, fluids, meds if necessary and I got better.

At 10: I got mononucleosis. It lasted for a year or so. During the illness I had: fever of over 104, chills, severe sore throat; body aches especially in lymph nodes, swollen lymph nodes, and exhaustion.
The exhaustion improved, but never went away. I never got back the childlike energy I had before that.

At around 11: myself along with three relatives in the same house would occasionally get blue coloration on our hands (peripheral cyanosis) (and once I had it on my face under my nose). It would last from a few minutes to a few hours. We had no other symptoms and it only occurred for a few months.

During teenage years: it seemed like each time I needed antibiotics my stomach became more and more sensitive to them, and, to everything in general.

At 14: I had a bout with a bad stomach virus. For the first time I began having severe dizziness and fainting with any severity of diarrhea, vomiting or sometimes just nausea. This has remained the case.

At 20: I got a stomach virus the doc called a rotavirus. Had severe stomach cramps, diarrhea and vomiting and went to ER. Was admitted and given intravenous fluids and anti-nausea medication.

For the past 10 years or so I occasionally get what I can only call “episodes”. They happen both while awake and awaken me from a sleep:
Rapid heart rate (110-130 bpm)
Palpitations
Shortness of breath
Nausea
A feeling of needing to flee or
A sense of impending doom
Shaking
Chills
Feeling the need to have a bowel movement (sometimes I go, sometimes not)
These “episodes” last from about ten minutes to an hour.

Over the years I have developed these symptoms; listed in order of development the best I can remember:
•Digestive issues (upset and sensitive stomach with no apparent reason; constipation with occasional bouts of diarrhea; acid reflux; feeling and looking bloated)
•Anxiety (acute at times, over the years I’ve learned to quash it enough to function…most of the time)
•Headaches &/or Body Aches for no known reason
•Heavy, painful periods until beginning birth control.
•Rapid heart rate &/or palpitations as if my heart is “fluttering”
•Lightheadedness & Dizziness (even stooping and standing back up is a problem)
•Fainting
•New and worsening allergies: seasonal, insect bites/stings, pet dander, sun exposure, poison ivy, products used on skin: soaps, lotions, etc. (as a reminder, I had almost none of these growing up)
•Steady Weight Gain (I am 5’ 3” and currently 175 lbs.)
•Lack of motivation
•Dry, itchy skin
•Swelling of hands and feet
•Puffy, round face
•Shortness of breath
•Sugar cravings
•Depressed, hopelessness, sadness
•Sensitivity to both cold and heat; others can be comfortable when I am not
•Sensitivity to pain (sometimes a small pinch can be painful when I know it shouldn’t be)
•Sleep difficulties; trouble falling or staying asleep or sleeping too much.
•My hair has changed a lot in texture; from silky, thick and fast growing to dry, frizzy, fine and falling/breaking…also gray 🙁
•Excessive daytime sleepiness
•Jaw clenching & pain; the pain is literally constant and there are multiple palpable knots in my jaw area.
•Neck & shoulder pain and knots
•Increasing irritability and lack of patience; I used to be a very patient person, now I can fly into a rage over a jar I can’t open;
•Mental Fog; this really concerns me; I can’t focus, remember or comprehend, and it only seems to get worse.
•Fatigue. I should list this first as it is by far the worst symptom, but it was later to come about. I can hardly get through the basic tasks of the day. I no longer enjoy things; almost nothing really because I don’t have the physical or mental energy.

Some of these things may or may not be related and some may simply be symptoms of aging. But these symptoms, especially the fatigue, are literally sapping my will to live. I feel useless, stupid, weak, and lazy, and I am a terrible burden on my husband. Lately, I can think of a million reasons everyone would be better off without me, and almost no reason I am useful. I can’t keep being so unproductive. I can’t keep existing like this.

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Lori, Volunteer Mentor | @loribmt | Jun 8, 2022

Hi @witsend000 My hand was on my heart reading this list of symptoms you’re experiencing. No wonder you’re feeling so overwhelmed. This a lot going on!
The first thing that occurred to me-you mentioned having Mono at the age of 10 and nothing was the same after that. Well, Mono is caused by the Epstein Barr virus and once in your system it never leaves. Some people can flare ups of this virus when their immune system is weakened, such as being tired, depressed, stressed, etc..
https://www.mayoclinic.org/diseases-conditions/mononucleosis/symptoms-causes/syc-20350328
During any of your blood work has a test ever been run to see if you have active EBV?

A weakened immune system can also account for many of your symptoms of getting ill more frequently, worsening allergies and the like.
Have you had a recent blood panel done to check for thyroid issues, vitamin deficiencies?
Have your hormone levels been checked recently? They play a huge roll in our overall health. I went through a serious period of depression in my early 40s. I had anxiety attacks, depression, lack of self worth, NO energy and could barely function. It turned out to be a hormonal imbalance and with medication it helped return my life to normal. The biggest difference was returning to exercise. Do you get out and walk daily?

Another option you might want to consider is finding an Integrative Medicine practitioner. They tend to focus on person as a whole package. Not just zeroing in on one aspect. In addition to providing treatments that address immediate health concerns, integrative medicine focuses on the broader concepts of health (including living a healthy lifestyle) that promote a person’s overall health and wellbeing.
https://www.verywellhealth.com/hormone-blood-test-for-women-89722
https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/about/pac-20393581
https://my.clevelandclinic.org/health/treatments/21683-integrative-medicine
https://www.verywellhealth.com/integrative-medicine-5116957
I’m not a mental health expert but I do remember experiencing some of the same things you’re going through. It’s awful to feel so helpless, or useless. But you’ve taken the first step by reaching out!
When was your last physical?

witsend000 | @witsend000 | Jun 8, 2022

Thank you for your response @loribmt. Just having someone really understand is a comfort, as I feel like no one understands or may even think I’m just lazy.

I have thought for many years that my symptoms are related to having mono, especially the fatigue because of how I never really recovered the energy I had before that. I’ve read up on mono and EBV. I mentioned this to health professionals multiple times, but they don’t seem interested. Like they either don’t think that’s what is going on and dismiss it; or they just say well it could be, but don’t seem interested in investigating.

A few days ago I had a complete blood work up. Thyroid function and hormone function
were among the things tested. I also had a chest x-ray and an EKG. The only thing found was elevated cholesterol. (probably because I’ve become so fat and unhealthy).

I’ve done a lot of research on many things trying to find what’s wrong or at least someway of dealing with the symptoms so I can function properly. I will put a list of different things I’ve suspected and investigated. Not that I thing I have multiple diagnoses, just things I found that seem to fit how I feel -

Anemia (I have had a mild case before)

Low blood sugar (hypoglycemia)

Irritable Bowel Syndrome

Hypothyroidism

Postural Orthostatic Tachycardia Syndrome

Paroxysmal Supraventricular Tachycardia

Epstein-Barr Virus flare up

From what I’ve read about hypothyroidism and watched videos from people who have it, this seems to fit the best. However, I’ve had multiple blood tests that checked thyroid function and the doc always says it’s fine.
So, I keep coming back to the same conclusion…that I am lazy…a weak willed person, both physically and mentally.

I used to walk everyday. Sometimes with my dog, sometimes by myself. I used to love walking. Now I only enjoy it occasionally. If it’s cold, it seems to drain my energy faster. If it’s hot, I get dizzy and short of breath. Often, I get short of breath when the temperature is perfect. I used to enjoy gardening and other things as well.

Any kind of physical activity is taxing. The other day I was cleaning the floor where the fridge usually sits. Every time I stooped down and stood back up I got dizzy. A couple times I sat on a stool because I felt like I might faint.
This is actually what made me make a doc appointment and to ask for tests. To feel that way just cleaning my kitchen floor…that’s not normal.

I find I also don’t enjoy mental activities that I used to. I used to love organizing. Now I can’t figure out how to arrange a cupboard.

I want to be healthy. I want to be useful and productive. I don’t know what to do. I find it very difficult to talk to others about how I’m feeling, especially people I feel don’t understand or judge me like the doctors.

ortegagirl1 | @ortegagirl1 | Jun 8, 2022

Hello @witsend000 , Sorry to hear of your situation. Has anyone said you may have Fibromyalgia? There is a facebook site http://www.fibromyalgiatreatment.com that has many people with fibromyalgia who share and the site is in contact with Dr. R. Paul St. Amand and associates who offer supportive information regarding treatment. It might be worth checking out. Also you could look up on the internet Dr. R.Paul St. Amand and find the books he has authored on fibromyalgia. Best wishes for finding correct diagnosis and treatment.

Becky, Volunteer Mentor | @becsbuddy | Jun 8, 2022

@witsend000 I wish I could wave a magic wand and make all your troubles go away, but i can’t. You have a lot of things going on and I don’t know if they’re related or not. Are you working with a therapist to help you with some of your feelings, like being a lazy, weak person. You really do need someone to talk to about all this. You are certainly welcome to pour all your feelings out here, but we’re not equipped to help you. But sometimes getting all your feelings out can be good.
You’ve listed all the problems you’ve had over time. Can you pull out 2 or 3 things that especially bother you right now? And narrow this list down so you have something specific to discuss with the doctor.

John, Volunteer Mentor | @johnbishop | Jun 8, 2022

@witsend000, I know it has to be extremely difficult dealing with so many symptoms and not seeming to find any answers. I was wondering if the topics in these two discussions might be helpful:

-- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/
-- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

lvon | @lvon | Jun 9, 2022

I believe there are family genetics involved with this. I have the same problems as did my mother and now my daughter. I also found no relief from medical staff. Was diognoist with Gerd, Functional Dispepsia, HCM , which I have known for 50 years. High blood pressure, anxiety. No kidding, who would not have high blood pressure with all of this going on. Every single person in the Universe is different. I was told there is no help for major conditions. I have learned to live like this. I take natural supplement s for every thing, rest when I need to and work physically hard when I can. I find lots of things to enjoy so good luck and keep trying.

witsend000 | @witsend000 | Jun 10, 2022

Thank you everyone for your posts. I really appreciate feedback because I don’t feel like I have anyone to talk to about these things.

Hi @ortegagirl1. I have read about fibromyalgia. It seems to be similar to ME/CFS. My symptoms seem to fit more with ME/CFS partly because I don’t have the chronic severe pain usually associated with fibromyalgia. I personally believe these are both very real and terrible diseases with a physical cause that scientists just haven’t found yet. However I’m very reluctant to even mention these to a doctor (or anyone) because of the stigma associated with them. I’m a coward I know.

@becsbuddy -“ I wish I could wave a magic wand and make all your troubles go away, but i can’t. You have a lot of things going on”
Thank you for that becsbuddy. I have talked to a therapist in the past. Only had a couple sessions. It was expensive, but I also have a really hard time talking to others..especially face to face which is why I’m here.
Your idea about narrowing down focus to 2-3 symptoms is a good idea.

Hi @johnbishop. I checked out the links you posted. They were very interesting and I ended up on several other links as well. I have read a lot about ME/CFS and watched interviews of people with it. It really sounds like what I’m experiencing. But…as I said above, I’m a huge coward. I don’t think I’d have the courage to even mention this to anyone. I think some of the people closest to me would have a negative reaction to it. Like it’s not a real thing. So I don’t know what to do. After I watched the interviews and start talking it out in my head, I’m like no that’s not me…I’m not that sick…it can’t be that, I’m just really lazy and weak willed.

Hi @ivon. Its when I think about my mom and sister that I get angry and am like, there has got to be something medically wrong with us! I’ve told the doctor how my mom and sister have struggled for years with many of the same symptoms, and she preceded to almost validate then immediately go on to imply it’s personality, disposition, the way we think, etc. It really made me angry inside because how could she even begin to say that when she’s never even met them?

I will try to implement some of everyone’s suggestions. Thank you SO much for taking the time to read and respond to my posts.

Lori, Volunteer Mentor | @loribmt | Jun 11, 2022

Hi @witsend000 I found an interesting article today about the Epstein Barr Virus. You’d mentioned in your long list of symptoms that you had Mono when you were 10 years old. It is caused by the Epstein Barr virus (EBV).
In an earlier reply I’d wondered if you’d been checked for the EB Virus as it is never out of a person’s system once they’ve been infected. There some people who have ongoing issues for years of fatigue, flulike symptoms and more because the virus can reactivate when the immune system is weakened.
Here’s the article.
https://www.yahoo.com/finance/news/24-years-ago-virus-left-090000359.html
Let me know what you think!

witsend000 | @witsend000 | Jun 12, 2022

In reply to @loribmt "Hi @witsend000 I found an interesting article today about the Epstein Barr Virus. You’d mentioned in..." + (show)

Thank you for the link.
It’s like this person is describing my life! Especially these exurbs…
-“ More than anything, mono exhausted me, and kept exhausting me—long after the infection was over. Getting out of bed felt like a herculean task.”
-“ The accusations of laziness and resulting shame were real. But the symptoms, as nebulous as they were, were even more so. I felt like I was living in an alternate reality, suffering in some invisible hell no one else could see or understand. My symptoms and character were regularly called into question.”
(I know others do this, but I daily call my own symptoms and character into question)
-“Other symptoms may involve aches and pains, tender lymph nodes, digestive issues, chills and sweats, muscle weakness, shortness of breath, brain fog, and an irregular heartbeat.”
(These are the symptoms I experience the most)

I don’t understand if this is a known condition with known “classic” symptoms, why in the heck don’t any of my doctors figure it out?! It’s so frustrating and disheartening 🙁

I’ve been completely disheartened with life. I’ve lost my spiritual faith. Lately, I‘ve just focused on finding ways to deal with my symptoms while being as useful to my husband, my parents, etc as I can.

witsend000 | @witsend000 | Jun 13, 2022

The more I read about ME/CFS the more I am convinced this is what is affecting me.

I was reading about it on the CDC’s website. It can develop after an illness like mononucleosis. I can’t believe how many of the symptoms and the way the symptoms come about fit what I’ve experienced. Even when I read about ME/CFS in children/adolescents; this is exactly my experience. The article said that in adolescents dizziness, headaches and stomach issues are the most bothersome symptoms, whereas in adults it is usually fatigue, mental fog and various muscle pain.

This is EXACTLY what I’ve experienced.

But, I am still so very scared to even mention this to my doctor or my husband as I’m worried they don’t believe this is a “real” illness.

Is that stupid? How can I broach this with people who feel that way? Or, does it even matter?

Since there is no approved treatment nor a known cause, should I just educate myself and begin “treatment” as if I have this condition?