I feel incredibly hopeless.

Posted by morganjane @morganjane, Dec 17, 2023

I’ve lost 4 years of my life that I can never get back due to this “illness” that nobody can seem to figure out. Like many of you out there, I’ve encountered some of the coldest & most dismissive doctors out there. The lack of compassion from some of these physicians has truly bothered me. I’ve gotten the ole “barely do any actual research & slap the fibromyalgia diagnosis on it to get her out of my office” shtick more times than I’d like to admit. I’m exhausted. I can’t afford to go to a fancy medical center. I live in Arkansas & we have very few specialists & they all have pretty poor reviews. So I’ll put my symptoms out there in hopes someone runs across this one day & is like “oh hey, I know exactly what that is!”

I want to just preface that I’m in no way nor have I ever been a hypochondriac. I don’t sit & dwell on my health. The only reason I’m so concerned right now is because my health got too bad to ignore.
I’m 32 years old. Female. All of these symptoms began almost 4 years ago out of the blue. No known trigger, I was happy, healthy, very active & fit. It’s literally like I woke up one day & felt like crap & it never went away. Its left me bedridden most days. Had to quit working as an Esthetician & work from home. I’m truly MISERABLE.

SYMPTOMS:
-Debilitating Fatigue *Severe
-Brain Fog *Severe
-Memory loss
-Cognitive impairment *Severe
-Facial flushing *Severe
-Zero energy
-Feeling like I’m wearing a necklace that is too tight & can hear the blood rushing in my ears
-Body feels like it’s vibrating when I lay down sometimes
-Excessive sweating
-Exercise Intolerance
-Always hot *Any sort of physical exertion makes me feel like I’m going to overheat or pass out. ie. washing dishes, fixing my hair, showering, etc.
-Dry skin on entire body *Severe
-Dry eye syndrome *Severe
-Dry mouth
-Dry sinuses with super sticky snot
Basically my entire body is dry from the inside out.
-Keratosis Pilaris on lower legs caused by the dry skin
-Frequent canker sores
-High blood pressure
-High cholesterol
-Raynaud’s Syndrome *Toes & fingers. Mother also has this condition.
-Livedo reticularis on limbs when cold
-Rapid weight gain *About 20lbs in 1 year.
-Depression *This is a symptom, NOT the cause.
-Chronic pain in joints
-Frequent severe headaches on one side of the head, towards the front
-Fingers or feet swell & turn red/warm
-Ridged, brittle fingernails
-Red vertical line down big toenail
-Hair loss
-Frequent infections
-Gum Disease
-Rapid tooth decay
-Dark scarring
-Heart palpitations
-Insomnia *Severe
-Arthritis *Knees, hips, spine, ankles
-Urine Hesitancy
-Heat intolerance
-Either no period or it’s extremely light and only lasts about 1 day
-Depleted Estrogen & Progesterone *They were brought up with BC pills but no idea WHY they were depleted
-Constant crying
-Constipation *I have ibs-c but the c has gotten significantly worse.
-Tachycardia *This is constant. Mother also has this condition.
-Cravings for carbs & sweets constantly
-Nose runs with physical exertion
-Enlarged lymph nodes in armpits that get bigger & very sore around the time of my period even if I don’t actually have my period

All of the labs that have been done are because I requested them. All labs have come back normal aside from the high cholesterol & the high blood cortisol. The saliva & 24 hour urine cortisol tests were normal.
I have a thyroid nodule that they said just needs to be monitored annually.
Brain scan was normal.
I’ve had the normal blood work for thyroid & ANA which were normal.

I honestly feel like I probably have a fairly normal condition but I can’t get a doctor to give me enough time during the visit to actually get anywhere and I’m sick of being told it’s probably just fibromyalgia or in my head. ITS NOT.

H E L P 🏳️

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

So, should I have a glass of wine and cigarette tomorrow night? I’m sort of serious, in case it might help.

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@cekkk

Continuing to question, not to argue, I'm thinking hopes are addicted to cigarettes. It may kill some after decades and decades of smoking. Others must have their glass of wine at dinner. They're not alcoholics but they've got to have it, so I call that an addiction. I'm thinking that there are addictions that don't have the same terrible outcomes as meth and heroin. So do you believe that becoming addicted to a drug that makes your life better and is given under medical supervision is still a very negative thing?

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Columbia univ professor Carl Hart(?) author of Drug use For Adults essentially tells us that drugs do not have to become what is called dependency-leading to what is an unhealthy habit; people can responsibly enjoy it and carry on with their normal lives.
Personally I've never been dependent on neither cigarettes nor alcohol (beer). Some time I have two bears over two consecutive days and other times not one in a whole week or two.
Essentially, such 'pleasures' are in the same category as cakes, sports betting or lottery games, even compulsive sex and shopping. It's Deficit of Healthy Pleasures -- of buoyant friendships, challenges of finding a new insight into a social problem, delicious healthy foods and restful sleeps, Sprinkle that with capacity to wonder in this life of ours on a solitary planet in a vast expanding universe and I have enough pleasure for a week. This is the antidote for addictions of all kinds. Alcohol, drugs are just the mediums-of-transitory escapes.

Here's a piece in the Times about pain, by an accredited professional and writer: https://www.nytimes.com/2023/12/24/opinion/pain-crisis-opioid-addiction.html

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@celia16

So, should I have a glass of wine and cigarette tomorrow night? I’m sort of serious, in case it might help.

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Please see my post below in reply to cekkk, who actually has a legitimate question: Is a life with one set of condition truly superior or better than the other he is proposing. It's a question I've grappled with off and on over the years, to understand a philosophic position: We all die at the right time (Nietzsche?)

Yes, I'd be glad to discuss further, even over phone if necessary.

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I want to thank everyone for your awesome words of encouragement & I’m sorry we have all been brought here under such poor circumstances, but I’m glad there is a community to make us feel less alone.

Many asked about Lyme & I was tested for Lyme Disease which was negative.

Sadly, my PCP fired me as a patient a few weeks ago because she found out I asked for a second opinion. (This was because she had told me to try Mayo Clinic because she was out of ideas even though she put forth zero effort in even finding a diagnosis, but I digress)
Apparently both doctors are under the same network & she was alerted to it somehow. All I was told was that she is severing ties with me because there were “negative connotations” in the notes from the other doctor & because of that, she no longer feels she can be my doctor. I was blindsided by this but more so just really confused because I KNOW I did not say a single negative thing about her during my visit. I mean, I’m not a 16 year old for crying out loud.

You see, having tattoos & being involved in the tattoo world for so long, I heard a long time ago from an artist that you NEVER speak badly about an artist to another artist because it only makes YOU look untrustworthy and difficult to work with. Some artists will not even work with you if you have that sort of behavior, which I don’t blame them. They just don’t put up with putting other artists down.
Anyways, that little tidbit has always stuck with me & I’ve since applied it to every other professional out there, including physicians. I simply would NEVER talk badly about a physician to another physician. Period.

I was able to get ahold of the notes from the visit & it only confirmed my suspicions that she was making it up. I truly believe she was just ready to cut ties with me because I would always request new testing & asked questions.

So, now I’m without a PCP with a chronic illness. I’m heartbroken, I’m offended, & honestly my feelings are hurt & I don’t like my character being questioned. But….whats done is done and I’m sure it was time for a new PCP anyways so maybe it’s a blessing in disguise. I’m not giving up yet. If anything I’ll survive purely out of spite. Lol.

Thank you all so very much for your kindness. I’m truly in awe of the kindness I’ve seen in this little community of complete strangers on the internet.

-🖤Morgan

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@morganjane

I want to thank everyone for your awesome words of encouragement & I’m sorry we have all been brought here under such poor circumstances, but I’m glad there is a community to make us feel less alone.

Many asked about Lyme & I was tested for Lyme Disease which was negative.

Sadly, my PCP fired me as a patient a few weeks ago because she found out I asked for a second opinion. (This was because she had told me to try Mayo Clinic because she was out of ideas even though she put forth zero effort in even finding a diagnosis, but I digress)
Apparently both doctors are under the same network & she was alerted to it somehow. All I was told was that she is severing ties with me because there were “negative connotations” in the notes from the other doctor & because of that, she no longer feels she can be my doctor. I was blindsided by this but more so just really confused because I KNOW I did not say a single negative thing about her during my visit. I mean, I’m not a 16 year old for crying out loud.

You see, having tattoos & being involved in the tattoo world for so long, I heard a long time ago from an artist that you NEVER speak badly about an artist to another artist because it only makes YOU look untrustworthy and difficult to work with. Some artists will not even work with you if you have that sort of behavior, which I don’t blame them. They just don’t put up with putting other artists down.
Anyways, that little tidbit has always stuck with me & I’ve since applied it to every other professional out there, including physicians. I simply would NEVER talk badly about a physician to another physician. Period.

I was able to get ahold of the notes from the visit & it only confirmed my suspicions that she was making it up. I truly believe she was just ready to cut ties with me because I would always request new testing & asked questions.

So, now I’m without a PCP with a chronic illness. I’m heartbroken, I’m offended, & honestly my feelings are hurt & I don’t like my character being questioned. But….whats done is done and I’m sure it was time for a new PCP anyways so maybe it’s a blessing in disguise. I’m not giving up yet. If anything I’ll survive purely out of spite. Lol.

Thank you all so very much for your kindness. I’m truly in awe of the kindness I’ve seen in this little community of complete strangers on the internet.

-🖤Morgan

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It truly is a shock to be "fired" by a doctor isn't it? Until it happened to me a few years ago, I never even knew it was a possibility.

I love your positive attitude though, when you say"...I’m sure it was time for a new PCP anyways so maybe it’s a blessing in disguise..."

I know how hard it is to find a new provider, especially with a complex history. My PCP of over 20 years left primary care last December, and it took 3 tries this year to find the right match in a new provider, but now I am comfortable with the latest one, she "gets" that I am always going to want in depth answers and reasons and is very easy to talk to, just like my previous person.

I wish you luck in finding the right person!
Sue

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Whatever is true, whatever is noble, what ever is right…think on these things. Philipians 4:8

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I agree that you’re sick and I’m not a doctor. You might want to try a medical clinic instead of a hospital or go to a different hospital. I pray that things get better for you!

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@celia16

So, should I have a glass of wine and cigarette tomorrow night? I’m sort of serious, in case it might help.

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I’d definitely skip the cig, but that glass of wine sounds pretty good!

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@wascaly

I’d definitely skip the cig, but that glass of wine sounds pretty good!

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I’m planning on a nice Malbec!

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I really like Mumm Napa Blanc de Blanc….🥹

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