Need advice on multiple symptoms (*long post*)

Posted by witsend000 @witsend000, Jun 7 10:46pm

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.

Interested in more discussions like this? Go to the Just Want to Talk group.

@witsend000

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?

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@witsend000 – There are some great tools for the visit with your doctor that might be helpful for you.

Tools for the Visit – https://patientrevolution.org/visit-tools
Consider the Barriers – https://patientrevolution.org/barriers
Let's talk about $ – https://patientrevolution.org/cost

Have you seen the TED Talk by Jennifer Brea?
— What happens when you have a disease doctors can't diagnose: https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

REPLY
@johnbishop

@witsend000 – There are some great tools for the visit with your doctor that might be helpful for you.

Tools for the Visit – https://patientrevolution.org/visit-tools
Consider the Barriers – https://patientrevolution.org/barriers
Let's talk about $ – https://patientrevolution.org/cost

Have you seen the TED Talk by Jennifer Brea?
— What happens when you have a disease doctors can't diagnose: https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Jump to this post

Thank you for the links. I think these could be helpful with talking to the doctor.

I went in the last time with a list of my symptoms…but I was too scared and embarrassed to actually go through it. I always feel like a hypochondriac or like “well everyone has these kinds of problems, but they just deal with it”.

I’ve been really down…I appreciate all the suggestions and support 👍🏼

REPLY
@witsend000

Thank you for the links. I think these could be helpful with talking to the doctor.

I went in the last time with a list of my symptoms…but I was too scared and embarrassed to actually go through it. I always feel like a hypochondriac or like “well everyone has these kinds of problems, but they just deal with it”.

I’ve been really down…I appreciate all the suggestions and support 👍🏼

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@witsend000 , please don’t feel scared or embarrassed to talk about your health problems—they are REAL! Using the information that @johnbishop gave you, try practicing with your husband. In fact, help your husband to understand what is going on with you. HE can be your #1 advocate in working with the doctors. Also, tell him that you would like him to accompany you on all os your doctor visits. He can reinforce what you say. His presence also says that you are serious and need to be listened to.
All those with autoimmune diseases have felt the same way as you and many have been dismissed by doctors, like you. But, YOU are going to stand tall and get results!
https://autoimmune.org/its-all-in-your-head-recognizing-the-plight-of-women-living-with-autoimmune-diseases-on-international-womens-day/
I included a very good article you might find helpful.
When is your next appointment?

REPLY
@becsbuddy

@witsend000 , please don’t feel scared or embarrassed to talk about your health problems—they are REAL! Using the information that @johnbishop gave you, try practicing with your husband. In fact, help your husband to understand what is going on with you. HE can be your #1 advocate in working with the doctors. Also, tell him that you would like him to accompany you on all os your doctor visits. He can reinforce what you say. His presence also says that you are serious and need to be listened to.
All those with autoimmune diseases have felt the same way as you and many have been dismissed by doctors, like you. But, YOU are going to stand tall and get results!
https://autoimmune.org/its-all-in-your-head-recognizing-the-plight-of-women-living-with-autoimmune-diseases-on-international-womens-day/
I included a very good article you might find helpful.
When is your next appointment?

Jump to this post

Thank you for your encouragement and validation.
👍🏼

REPLY

Has anyone had this experience or something similar?

Being awaken from a sleep of about an hour with:
Heart palpitations
Dizziness
Nausea
Headache
Feeling the need to get up and move around
Urge to have bowel movement (which usually does not happen)
A sense of impending doom
OR
A feeling that “something’s not right”

Occasionally these “episodes” happen while awake also. And often times I can predict when they might happen because of already feeling ill with dizziness, palpitations, nausea &/or headache for hours or days before.

I have talked to my doctor who chalked it up to anxiety. But, I think there is a physical cause.

REPLY

Has anyone had this experience or something similar?

Being awaken from a sleep after about an hour with:
Heart palpitations (feels rapid &/or irregular)
Dizziness
Nausea
Headache
Feeling the need to get up and move around
Urge to have bowel movement (which usually does not happen)
A sense of impending doom
OR
A feeling that “something’s not right”

Occasionally these “episodes” happen while awake also. And often times I can predict when they might happen because of already feeling ill with dizziness, palpitations, nausea &/or headache for hours or days before hand.

I have talked to my doctor who said it sounded like anxiety, but I think there is a physical cause as I always feel ill for a period of time before the episodes.

REPLY
@witsend000

Has anyone had this experience or something similar?

Being awaken from a sleep after about an hour with:
Heart palpitations (feels rapid &/or irregular)
Dizziness
Nausea
Headache
Feeling the need to get up and move around
Urge to have bowel movement (which usually does not happen)
A sense of impending doom
OR
A feeling that “something’s not right”

Occasionally these “episodes” happen while awake also. And often times I can predict when they might happen because of already feeling ill with dizziness, palpitations, nausea &/or headache for hours or days before hand.

I have talked to my doctor who said it sounded like anxiety, but I think there is a physical cause as I always feel ill for a period of time before the episodes.

Jump to this post

A couple symptoms I missed in the list are
Shaking
Chills
Feeling hot and cold at the same time, like when you have a high fever.
Thank you for reading.

REPLY

A couple symptoms I missed are
Chills
Shaking
Feeling hot and cold at the same time like when you have a high fever.
Thanks for reading.

REPLY
@witsend000

Has anyone had this experience or something similar?

Being awaken from a sleep after about an hour with:
Heart palpitations (feels rapid &/or irregular)
Dizziness
Nausea
Headache
Feeling the need to get up and move around
Urge to have bowel movement (which usually does not happen)
A sense of impending doom
OR
A feeling that “something’s not right”

Occasionally these “episodes” happen while awake also. And often times I can predict when they might happen because of already feeling ill with dizziness, palpitations, nausea &/or headache for hours or days before hand.

I have talked to my doctor who said it sounded like anxiety, but I think there is a physical cause as I always feel ill for a period of time before the episodes.

Jump to this post

Since you’ve discussed this with your doctor and didn’t find any underlying medical condition, this sounds like the classic symptoms of a panic attack. They’re horrible and it seems when you have one, the thought of possibly having more fuels the anxiety level, doesn’t it? I suffered from them too, about 40 years ago. I hated going to bed at night for fear of waking up with the symptoms. You’re right, it is a feeling of dread and doom!

I was able to get control of this through bio-feedback, which was a “newish” technique back then. Now it’s mainstream along with other mindfulness programs to help you get anxiety and the panic attacks under control.

Mindfulness therapy works. If I would feel an attack coming on, with the tools I learned on calming myself, I was able to ward off the attack. It’s a matter of realizing “I’ve been through this before and I didn’t die.” I learned that I have the ability to override my emotions and calm my mind and body down.

I’ve found several good articles for you this morning to help you understand you’re not alone in this. These articles discuss the symptoms and potential causes of panic attacks. The last article has some calming meditation techniques for calming.
https://www.midtownnephrology.com/panic-attack-symptoms-and-treatment/
https://www.mayoclinic.org/diseases-conditions/panic-attacks/symptoms-causes/syc-20376021
https://www.verywellmind.com/symptoms-of-a-panic-attack-5207966
https://www.verywellhealth.com/how-to-stop-a-panic-attack-5202930
https://www.verywellmind.com/mindfulness-meditation-for-panic-disorder-2584082
Let me know what you think!

REPLY
@witsend000

Has anyone had this experience or something similar?

Being awaken from a sleep of about an hour with:
Heart palpitations
Dizziness
Nausea
Headache
Feeling the need to get up and move around
Urge to have bowel movement (which usually does not happen)
A sense of impending doom
OR
A feeling that “something’s not right”

Occasionally these “episodes” happen while awake also. And often times I can predict when they might happen because of already feeling ill with dizziness, palpitations, nausea &/or headache for hours or days before.

I have talked to my doctor who chalked it up to anxiety. But, I think there is a physical cause.

Jump to this post

Good morning, I didn’t realize you posted this twice and left an answer for you in the other comment.
Here’s a cut and paste of my reply for you. I hope you’re feeling better this morning. ☺️

Since you’ve discussed this with your doctor and didn’t find any underlying medical condition, this sounds like the classic symptoms of a panic attack. They’re horrible and it seems when you have one, the thought of possibly having more fuels the anxiety level, doesn’t it? I suffered from them too, about 40 years ago. I hated going to bed at night for fear of waking up with the symptoms. You’re right, it is a feeling of dread and doom!

I was able to get control of this through bio-feedback, which was a “newish” technique back then. Now it’s mainstream along with other mindfulness programs to help you get anxiety and the panic attacks under control.

Mindfulness therapy works. If I would feel an attack coming on, with the tools I learned on calming myself, I was able to ward off the attack. It’s a matter of realizing “I’ve been through this before and I didn’t die.” I learned that I have the ability to override my emotions and calm my mind and body down.

I’ve found several good articles for you this morning to help you understand you’re not alone in this. These articles discuss the symptoms and potential causes of panic attacks. The last article has some calming meditation techniques for calming.
https://www.midtownnephrology.com/panic-attack-symptoms-and-treatment/
https://www.mayoclinic.org/diseases-conditions/panic-attacks/symptoms-causes/syc-20376021
https://www.verywellmind.com/symptoms-of-a-panic-attack-5207966
https://www.verywellhealth.com/how-to-stop-a-panic-attack-5202930
https://www.verywellmind.com/mindfulness-meditation-for-panic-disorder-2584082
Let me know what you think!

REPLY
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