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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I lost my marriage when I least expected it. I never thought he would leave.. we had been together 24 yrs.. my children went abroad.. he told them I was psychiatrically ill. I just thought we did not understand each other. He left me the house and a little bit of money. He had loads. I had to fix the house that was breaking.. it was old and had major problems - no matter what I tried, there was another issue to deal with alone. Eventually whilst trying to fix a few breakages in a copper pipe in the floor, I fell in the hole and was sent to a psychiatric clinic by my youngest daughter - hoping they would help. What could they do? I was unemployed, had fallen and had to try fix the house and sell all my belongings.. the harder I tried.. the less I could see. The clinic was an utter waste of time. What did any of the specialists understand about losses of this kind, house problems, lack of employment and loneliness? NOTHING.... eventually a year later, after having bent over backwards looking for work and finding nothing. .and living alone in my little old place with more problems construction wise around me... still always alone... I reached a point of hopelessness. I ended up a the local government hospital - it was a waste.. there the doctor sent me to the same psych clinic I had wasted my time at a year previously. There the psychiatrist said she would treat me.. and gave me rispiridone - an anti-psychotic, anti-schitzophrenic drug, also used for bipolar. I was never indicated for this.. and went through the most atrocious side effect. I could not walk.. amongst other things.. shaking and lost partial vision. The doctor then left to go on study leave.. and I was left in the hands of a string of doctors who gave me a few minutes of their time. Then I was sent to a physician who did nothing but said "life was valuable." I had lost all of mine.. and had been trying but did not know what more to do. Eventually I ended up at the local hospital where they injected me with something when I felt all my muscles were going into spasm. It was horrific.. they never told me what it was...
The psychiatrist phoned and then said I should go back to the local hospital - psych ward where I sat for a few days.. eventually leaving and coming back to the little flat. Here I tried to find things to do.. and things to fix.. I started.. during that time the guy who came to help stole my camera! I was angry.. but also I started with side effects again from that drug.. and had to go back to the hospital psych ward.. there they tried to give me more rispiridone which I refused and they gave me a few other drugs - no idea what. It was traumatic.. eventually they sent me to a longterm psych place.. where I sat doing nothing for a few months.. eventually finding a lawyer to get me out.
I came back to my flat .. feeling desperate to find a way to build a future.. all alone. It was scary.. but the last thing I could think of was to open a gift shop. I found some foreigners who I hoped would support me if I supported them... and tried to find things to sell. I opened the shop - reticently... knowing it was a longshot, but I had to try. I had very little support and the foreigners, who I wanted to present workshops slowly disappeared even though I had paid them. I was feeling too stretched and so alone. Eventually I closed.. and that was two yrs ago. I was unable to sell many of the goods and although I tried online teaching again.. I could not find many students.. It hardly made a trickle of a difference financially and emotionally.
Six months ago I started to feel side effects of the drug again.. it started slowly and got increasingly worse... I tried to contact every person I could think of, knowing that because of my actions almost three years ago, I would be sent back the psych clinic.. which is not the answer. The manufacturer says there is no remedy for a drug prescribed for a problem they never had!!! So I am snookered.

My problem is - immense grief. huge loneliness, not feeling understood, drugs given at a psych clinic, doctors and counsellors saying "they understand" when they cannot understand if they have never walked it, unemployment, dwindling funds, having to do everything myself, not finding a companion, people not understand what I had to endure giving away most of my belongings and losing my children and partner (as well as friends) and losing the future I dreamed of having, plus the person I was... so sitting with purposelessness and no identity .. I felt I had no value and could not find my way.
Today I phoned the doctor who prescribed the drug.. she ducked and dived telling me for a second time she has retired, and that I need to go back to the psych ward.
AGAIN I reiterate.. how do psych drugs help you accept that you LOST your home? That is was hugely traumatic practically. That you knew nothing about building and construction problems prior to that.. that you have been left too little money to survive anything near your expected lifespan? That there are no single men for women after the age of 50.. that when you try build businesses and they fail and you cannot find work.. it is horrendous.. you are terrified.. and when you let your children go and they don't even seem to know you or fight for you.. you just feel "what was it all for? and "what is it all for"?
I wake each day with the most horrific side effects I feel today. I cannot explain them except I know it is not my mind. I do not know where to go and I have nobody to be with. Everyone is building their lives.. and I am just alone.. trying to find my way... I have nobody who understands and nobody who has walked what I do.
At 55 now.. what do I do? People know what I tried.. so steer clear.. people do not know who I was and what I was capable of.. and how much I have endured... if they did, they would find a way to come alongside me and fight for me.. even to find a remedy for the drugs (that I should have never had).. and find a partner who is willing to share my life with me.. even though I walk through hell each day.
The prayers people send .. seem empty now and each day is a matter of just trying to survive.. but I can't seem to find why.. nobody wants to be with me and nobody really needs me.. and BIGGEST OF ALL.. nobody was there, so nobody has seen what I have endured and what I go through each day. I know I was never meant to go through this.. I am in a stalemate in every area of my life. It is a lifesentence living alone.. after what I had.. and the way men treat me - the lack of options and opportunities. South AFrica is a nightmare on its own for a single middle aged unemployed woman. Each day I ask God, "What do I do" .. a million times and each day I hear nothing.

REPLY
@foxysoxy21

I lost my marriage when I least expected it. I never thought he would leave.. we had been together 24 yrs.. my children went abroad.. he told them I was psychiatrically ill. I just thought we did not understand each other. He left me the house and a little bit of money. He had loads. I had to fix the house that was breaking.. it was old and had major problems - no matter what I tried, there was another issue to deal with alone. Eventually whilst trying to fix a few breakages in a copper pipe in the floor, I fell in the hole and was sent to a psychiatric clinic by my youngest daughter - hoping they would help. What could they do? I was unemployed, had fallen and had to try fix the house and sell all my belongings.. the harder I tried.. the less I could see. The clinic was an utter waste of time. What did any of the specialists understand about losses of this kind, house problems, lack of employment and loneliness? NOTHING.... eventually a year later, after having bent over backwards looking for work and finding nothing. .and living alone in my little old place with more problems construction wise around me... still always alone... I reached a point of hopelessness. I ended up a the local government hospital - it was a waste.. there the doctor sent me to the same psych clinic I had wasted my time at a year previously. There the psychiatrist said she would treat me.. and gave me rispiridone - an anti-psychotic, anti-schitzophrenic drug, also used for bipolar. I was never indicated for this.. and went through the most atrocious side effect. I could not walk.. amongst other things.. shaking and lost partial vision. The doctor then left to go on study leave.. and I was left in the hands of a string of doctors who gave me a few minutes of their time. Then I was sent to a physician who did nothing but said "life was valuable." I had lost all of mine.. and had been trying but did not know what more to do. Eventually I ended up at the local hospital where they injected me with something when I felt all my muscles were going into spasm. It was horrific.. they never told me what it was...
The psychiatrist phoned and then said I should go back to the local hospital - psych ward where I sat for a few days.. eventually leaving and coming back to the little flat. Here I tried to find things to do.. and things to fix.. I started.. during that time the guy who came to help stole my camera! I was angry.. but also I started with side effects again from that drug.. and had to go back to the hospital psych ward.. there they tried to give me more rispiridone which I refused and they gave me a few other drugs - no idea what. It was traumatic.. eventually they sent me to a longterm psych place.. where I sat doing nothing for a few months.. eventually finding a lawyer to get me out.
I came back to my flat .. feeling desperate to find a way to build a future.. all alone. It was scary.. but the last thing I could think of was to open a gift shop. I found some foreigners who I hoped would support me if I supported them... and tried to find things to sell. I opened the shop - reticently... knowing it was a longshot, but I had to try. I had very little support and the foreigners, who I wanted to present workshops slowly disappeared even though I had paid them. I was feeling too stretched and so alone. Eventually I closed.. and that was two yrs ago. I was unable to sell many of the goods and although I tried online teaching again.. I could not find many students.. It hardly made a trickle of a difference financially and emotionally.
Six months ago I started to feel side effects of the drug again.. it started slowly and got increasingly worse... I tried to contact every person I could think of, knowing that because of my actions almost three years ago, I would be sent back the psych clinic.. which is not the answer. The manufacturer says there is no remedy for a drug prescribed for a problem they never had!!! So I am snookered.

My problem is - immense grief. huge loneliness, not feeling understood, drugs given at a psych clinic, doctors and counsellors saying "they understand" when they cannot understand if they have never walked it, unemployment, dwindling funds, having to do everything myself, not finding a companion, people not understand what I had to endure giving away most of my belongings and losing my children and partner (as well as friends) and losing the future I dreamed of having, plus the person I was... so sitting with purposelessness and no identity .. I felt I had no value and could not find my way.
Today I phoned the doctor who prescribed the drug.. she ducked and dived telling me for a second time she has retired, and that I need to go back to the psych ward.
AGAIN I reiterate.. how do psych drugs help you accept that you LOST your home? That is was hugely traumatic practically. That you knew nothing about building and construction problems prior to that.. that you have been left too little money to survive anything near your expected lifespan? That there are no single men for women after the age of 50.. that when you try build businesses and they fail and you cannot find work.. it is horrendous.. you are terrified.. and when you let your children go and they don't even seem to know you or fight for you.. you just feel "what was it all for? and "what is it all for"?
I wake each day with the most horrific side effects I feel today. I cannot explain them except I know it is not my mind. I do not know where to go and I have nobody to be with. Everyone is building their lives.. and I am just alone.. trying to find my way... I have nobody who understands and nobody who has walked what I do.
At 55 now.. what do I do? People know what I tried.. so steer clear.. people do not know who I was and what I was capable of.. and how much I have endured... if they did, they would find a way to come alongside me and fight for me.. even to find a remedy for the drugs (that I should have never had).. and find a partner who is willing to share my life with me.. even though I walk through hell each day.
The prayers people send .. seem empty now and each day is a matter of just trying to survive.. but I can't seem to find why.. nobody wants to be with me and nobody really needs me.. and BIGGEST OF ALL.. nobody was there, so nobody has seen what I have endured and what I go through each day. I know I was never meant to go through this.. I am in a stalemate in every area of my life. It is a lifesentence living alone.. after what I had.. and the way men treat me - the lack of options and opportunities. South AFrica is a nightmare on its own for a single middle aged unemployed woman. Each day I ask God, "What do I do" .. a million times and each day I hear nothing.

Jump to this post

I am praying for you! NOTHING is too hard for our God!

REPLY

Please pray. I NEED work and THERE IS NOTHING.. I have APPLIED EACH DAY.. LOOKED EACH DAY.. TRIED MY OWN THING THREE TIMES.. IT IS TERRIBLE WHEN NOBODY NEEDS YOU AND NOBODY WILL PAY FOR YOUR SKILLS AND EXPERTISE.. PLUS I NEED THE MONEY, OF COURSE... BUT worst of all is the loneliness... I had no idea it could ever be this bad... and I simply cannot find any other single people to get to know. Where are they? Anybody aged 55 -70? There has to be a few.. .. and hopefully one for me, one day... the seconds drag each day... (and like I mentioned.. the impact of this drug I was given that had such bad side effects.. I am feeling it all again.. but the psychiatrist says it is all in my mind... ) IT GENUINELY ISNT.. it impacts me in so many ways each day, all day on top of this already complicated and hard life.. something has to change.. I do not know what more to try though. (I cannot go back to a psych clinic and sit there doing nothing like a caged convict... and then have pills shoved down my throat.. and I never needed them in my life before this all happened.. and honestly they have done more harm than any good... my problems were PRACTICAL - that led to emotional hurt... NO DRUGS FIX THE PROBLEMS I HAD! Sjoe... a South African expression!

REPLY
@foxysoxy21

I lost my marriage when I least expected it. I never thought he would leave.. we had been together 24 yrs.. my children went abroad.. he told them I was psychiatrically ill. I just thought we did not understand each other. He left me the house and a little bit of money. He had loads. I had to fix the house that was breaking.. it was old and had major problems - no matter what I tried, there was another issue to deal with alone. Eventually whilst trying to fix a few breakages in a copper pipe in the floor, I fell in the hole and was sent to a psychiatric clinic by my youngest daughter - hoping they would help. What could they do? I was unemployed, had fallen and had to try fix the house and sell all my belongings.. the harder I tried.. the less I could see. The clinic was an utter waste of time. What did any of the specialists understand about losses of this kind, house problems, lack of employment and loneliness? NOTHING.... eventually a year later, after having bent over backwards looking for work and finding nothing. .and living alone in my little old place with more problems construction wise around me... still always alone... I reached a point of hopelessness. I ended up a the local government hospital - it was a waste.. there the doctor sent me to the same psych clinic I had wasted my time at a year previously. There the psychiatrist said she would treat me.. and gave me rispiridone - an anti-psychotic, anti-schitzophrenic drug, also used for bipolar. I was never indicated for this.. and went through the most atrocious side effect. I could not walk.. amongst other things.. shaking and lost partial vision. The doctor then left to go on study leave.. and I was left in the hands of a string of doctors who gave me a few minutes of their time. Then I was sent to a physician who did nothing but said "life was valuable." I had lost all of mine.. and had been trying but did not know what more to do. Eventually I ended up at the local hospital where they injected me with something when I felt all my muscles were going into spasm. It was horrific.. they never told me what it was...
The psychiatrist phoned and then said I should go back to the local hospital - psych ward where I sat for a few days.. eventually leaving and coming back to the little flat. Here I tried to find things to do.. and things to fix.. I started.. during that time the guy who came to help stole my camera! I was angry.. but also I started with side effects again from that drug.. and had to go back to the hospital psych ward.. there they tried to give me more rispiridone which I refused and they gave me a few other drugs - no idea what. It was traumatic.. eventually they sent me to a longterm psych place.. where I sat doing nothing for a few months.. eventually finding a lawyer to get me out.
I came back to my flat .. feeling desperate to find a way to build a future.. all alone. It was scary.. but the last thing I could think of was to open a gift shop. I found some foreigners who I hoped would support me if I supported them... and tried to find things to sell. I opened the shop - reticently... knowing it was a longshot, but I had to try. I had very little support and the foreigners, who I wanted to present workshops slowly disappeared even though I had paid them. I was feeling too stretched and so alone. Eventually I closed.. and that was two yrs ago. I was unable to sell many of the goods and although I tried online teaching again.. I could not find many students.. It hardly made a trickle of a difference financially and emotionally.
Six months ago I started to feel side effects of the drug again.. it started slowly and got increasingly worse... I tried to contact every person I could think of, knowing that because of my actions almost three years ago, I would be sent back the psych clinic.. which is not the answer. The manufacturer says there is no remedy for a drug prescribed for a problem they never had!!! So I am snookered.

My problem is - immense grief. huge loneliness, not feeling understood, drugs given at a psych clinic, doctors and counsellors saying "they understand" when they cannot understand if they have never walked it, unemployment, dwindling funds, having to do everything myself, not finding a companion, people not understand what I had to endure giving away most of my belongings and losing my children and partner (as well as friends) and losing the future I dreamed of having, plus the person I was... so sitting with purposelessness and no identity .. I felt I had no value and could not find my way.
Today I phoned the doctor who prescribed the drug.. she ducked and dived telling me for a second time she has retired, and that I need to go back to the psych ward.
AGAIN I reiterate.. how do psych drugs help you accept that you LOST your home? That is was hugely traumatic practically. That you knew nothing about building and construction problems prior to that.. that you have been left too little money to survive anything near your expected lifespan? That there are no single men for women after the age of 50.. that when you try build businesses and they fail and you cannot find work.. it is horrendous.. you are terrified.. and when you let your children go and they don't even seem to know you or fight for you.. you just feel "what was it all for? and "what is it all for"?
I wake each day with the most horrific side effects I feel today. I cannot explain them except I know it is not my mind. I do not know where to go and I have nobody to be with. Everyone is building their lives.. and I am just alone.. trying to find my way... I have nobody who understands and nobody who has walked what I do.
At 55 now.. what do I do? People know what I tried.. so steer clear.. people do not know who I was and what I was capable of.. and how much I have endured... if they did, they would find a way to come alongside me and fight for me.. even to find a remedy for the drugs (that I should have never had).. and find a partner who is willing to share my life with me.. even though I walk through hell each day.
The prayers people send .. seem empty now and each day is a matter of just trying to survive.. but I can't seem to find why.. nobody wants to be with me and nobody really needs me.. and BIGGEST OF ALL.. nobody was there, so nobody has seen what I have endured and what I go through each day. I know I was never meant to go through this.. I am in a stalemate in every area of my life. It is a lifesentence living alone.. after what I had.. and the way men treat me - the lack of options and opportunities. South AFrica is a nightmare on its own for a single middle aged unemployed woman. Each day I ask God, "What do I do" .. a million times and each day I hear nothing.

Jump to this post

@foxysoxy21, I hear your despair and your loneliness. Your words have been read an ocean away. It may be only text on a screen, but these words are what I and others here on this forum can offer as you search for and find hope, healing and a path forward.

They say, when you've hit rock bottom, the only direction is up. I hope that can be true for you. When our support system of family and friends turns its back, we have to build a new network of support. You started by reaching out here - a good first step.

Might you be able to find a social worker who could help to find services to help you back on your feet? Additionally, you might be surprised that by giving, it will be you who receives. Are there opportunities where you could volunteer locally?

REPLY
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