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 🏳️

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@wascaly

I really like Mumm Napa Blanc de Blanc….🥹

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Oh yay! I haven’t had champagne in a while, but I used to really prefer it. Sounds fun. 🥳

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It’s very good! Gotten to where t don’t drink still wine anymore….

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Try it….it’s about $21….not outrageous.

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Occasional use of supportive glass of wine is not being an addict. Just be careful to not have too much, too often my friend. I hope you find relief soon.

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@morganjane, hi there, I was reading your message over and over, what caught my attention was your heading, I feel so hopeless and it truly is horrible to have all the symptoms and going through tests only to find out that they don’t have anything to offer to you. Honestly so many of your symptoms sound remarkably like Long Covid, did you have Covid in the past few years? I have many of the same symptoms that you described and most of them started after a Covid infection or in some cases it was the vaccine. On a bright note your tests came back negative but that doesn’t mean you’re not suffering. It’s good you’re here now where you can get helpful advice and find out what other options you have. It’s not easy to be in a situation where you know something isn’t right, after all we know ourselves better than anyone else, good luck to you and please stay strong in your efforts to get your answers.

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We're you worked up for lyme's disease?

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Hi Morgan Jane I'm feeling a bit lost too got small vessel disease of brain,I use to love doing walks keeping fit,got bursitis of the hip.ive got 1 female friend left as my other female friend doesn't talk to me since knowing about my incurable disease.nice to meet you stay strong x

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Wishing everyone well. I know many of us (including myself) have great struggles with our medical problems and the pains that we endure. And the difficulty and stress of it all leads many of us into depressions.

So very very sorry for the sufferings we endure.

Do take care all.

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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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@morganjane Have you had your PTH and blood calcium checked? Hyperparathyroidism could cause some of your symptoms. Just a thought. This different from Thyroid.

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