Chronic Illnesses of Millions of Women Left Untreated

Cosmopolitan magazine today published a stark and disturbing article about one woman’s fate in the hands of modern medical treatment-givers. Here’s the link to the distressing article: https://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/.

Brea was eventually diagnosed with myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS) in the United States. No longer able to read and write, she began an iPhone video diary to document her experience.

Her documentary, “Unrest,” which is out now in select theaters and will be on iTunes next month, features that footage, along with interviews with other severely ill ME/CFS patients, which Brea conducted from her bed via Skype. It provides a harrowing look at what it’s like to live with this one poorly understood, incurable disease that’s estimated to affect about 800,000 to 2.5 million Americans.

Many women also suffer from other invisible chronic diseases — from fibromyalgia to vulvodynia to interstitial cystitis to migraine — that have historically been seen as psychosomatic and remain poorly understood.

@horselover7216

Hi.
I have a mystery illness and I'm loosing more and more energy every day and I'm battling with the doctors on getting more expensive tests done.
I'm loosing hope and very suicidal and I think three? Days ago (memory is none existant and my brain is just blank and fuzzy) I tried strangling myself with my phone charger cord. Had too be restrained all day..
This morning, I even kicked off!
I'm refusing my NG tube and have just got a. Ng in anf fluids, after 3 days.. Having no feed though..
My ex support workers kept pissing me off and suggesting FND, it's not FND! I'm not making this up!

Okay so I failed too write all off this down and my mind is blank, plus my head feels all foggy!

Anyway. Will email you what I've written soo far!

Hi.
My name is Megan, I'm 24 years old and I live in the UK.
So after crying for what felt like hours, I've decided to contact you guys. However I keep forgetting that it's on a website and that if I minimise this, I will loose everything I've written. It's annoying because I got really far with this message! So now I'm writing it on a blank email, so that; if I forget and minimise this, I won't loose everything I've just written. 😑
I'm in The Royal Sussex County Hospital in Brighton, UK and I'm desperate for your help.
I've been in the acute admissions unit for over 3 months and I'm progressively just getting worse.
It's hard for me to type now as I don't have the strength and my fingers hurt, but I'm desperate. I have my phone rested on the bottom bar of my bed, very close to me. This is because I don't have the strength to even hold my phone.
So, until today, I was pretty sure that I had autoimmune encephalitis. However today, I found out that my mri scan came out normal.
However today (11th of January 2020) I've just realised that, Susanah (the writer and survivor, who wrote the true book brain on fire) had all normal test results too. So there is still a possibility that I have it.
They've sent off 4 test tubes of blood off to test for antibodies that'd indicate that I have encephalitis. However, I'm told that these blood tests won't come back for weeks. Also blood tests aren't always that reliable either. They've sent a urin sample off too.
A neorologist saw me on the 8th of January 2020.he did several reflex tests and during it. My right leg started shaking out of control. He thinks that my reflexes are over working and that the link between my brain and my legs aren't working properly. He also moved my toes up and down and asked if I knew which way my toe was pointing. It felt weird and I could tell but not fully. (if that makes sense)
Right now they are questioning if it's mitochondrial, however I'm not convinced. I already have a rare chromosome deletion called 2q37.3; why would I have another DNA problem..? 🤔 Plus it doesn't solve why I'm having auditory and visual hallucinations.
I'm also told they are due to do more scans.
Someone told me that I should request a ct scan (cat scan) would that show anything when mri doesn't..?
I feel so low and I feel like a freak, a freak that no one knows what's wrong with.. 😭

So right now my symptoms are:
Worsening headaches that spread too my neck

Joint pain

Back pain

Eye pain (can't open my eyes very well)
Weakness that suddenly came on (can't sit up or even hold my head up)

Seeing/ hear in things (I can "hear" people talk about me, that sound very real; but they aren't. I have too wait for my parents too go to bed before I go to bed, because otherwise I will "hear" them talking about, causing me to cry. Even if I do though, it doesn't really help. I can't talk to someone and let them walk away without "hearing" them talk about me. I used too have to pretend to go to the toilet, so I could go past the living room; just to check they weren't talking about me. I thought that everyone was out to get me and that they were talking about me. And I didn't believe them when they say they don't; because I can hear it. Right now I'm hearing a high pitched noise that no one else can hear, tried recording the sound but even that didn't pick it up. It happens a lot at night.
I can't see properly, so when my dad got me to practice opening my eyes to look at a picture; every time I looked at it, the picture would change, I got it wrong every time. Plus apparently it was the same picture every time, but to me the picture kept changing. I looked at a picture, it was of my sisters on Christmas day one year; except I didn't recognise that it was of both of my sisters. Because to me, one had strands of blue hair. Later found that this was actually my sister wearing a blue Christmas cracker hat.
I'm in hospital right now, and I was convinced my room was a different shape and bigger than it actually is. This confused me so much. I could see windows that weren't there, doors that weren't there, a bookshelf that wasn't there. A purple settee and a brown arm chair that wasn't there. A clock and stairs? That weren't there.
I thought my bed was slanted or tilted, or thought I was high up. (my mum thought it was because I can't see)
I thought my bed was triangular and sometimes thought I had somehow got my body the opposite way round (so my head was where my feet was and my feet were where my head was.
Obviously this still confuses me, but yeah..

Lack off sleep (haven't slept properly in over a month and I take strong sleeping tablets)
The only time I can sleep is when I cry for hours, like last night (the 10th of January 2020) I think this is because crying makes me exhausted.

Dramatic mood swings/ outbursts (change in behavior)

Sudden impulsive outbursts. (had to be restrained by two/three people a few days ago. They said I was out of control)

Worsening mood and mental health (feel invisible!)

Increasing sickness (take two different types off anti sickness tablets. I used to take three but they thought that the third (metaclorfromide) caused my incontinence with number 2, back when I was in Southampton General Hospital. This wasn't the case!)

Dizziness

Mobility changes (went from walking too not even being able too sit up and its the third time! Every time it happens, it's always worse than the last!)

Short term memory thats just getting worse and worse (forgot my dad's phone number a few days ago and I've known that, even before I even memorised mine.
Last night (3.1.2020) I was talking too my friend online and I realised how much I couldn't remember. Its scary actually. So the last think I can remember talking too my friend; was actually two years ago. I don't remember any recent conversations, it's all blank. I know we had more conversations than that, because I looked at our conversation history. Also on the 9th of January 2020, my advocate from mind, was supposed too come and see me; but I forgot. I only remembered when he texted me to cancel due to car problems. On the 11th of January 2020, I completely forgot about the whole conversation with my friend online. I only remembered when I was scrolling through my phone and saw the messaging icon on my phone.)

Struggling too go for a wee and so I'm now having to force myself to go (not pleasant. And now I have a catheter, because I was retaining over 500)

I'm constipated and laxatives don't seem to work now.i think on the 7th of January 2020, I had to have an enema for the first time and it was so painful that I screamed. Starting from the 8th of January 2020 I became incontinent. This was just overflow and stopped after a few days, but then started again. Today, on the 11th of January 2020 I found out that I'm still being given a heavy lot of laxatives. I don't think this is the cause of my incontinence though, as; I think that I was given laxatives constantly, from before the 7th. I only had one day off them and that was on the 9th. This is strange because, normally one sachet of movicol turns me incontinent. Before I had the enema, I had been given: two sachets of movicol, docisate sodium and two lots of suppositories in one day. Nothing worked)

Antidepressants, antipsychotics and painkillers not working now.
I'm on paracetamol, oramorth (morphine sulthate) dihydrocodeine, ibuprofen, buscopan, amatriptaline, peppermint oil, deloxatine, quatiapine, omeprazole, cefalexine (my profalactic antibiotic), cyclazine, ondansatron, zopiclone, my anti histomeine, movicol, scenna, docisate sodium and suppositories.
And no, the strong painkillers are not the reason of why I was so constipated. I was on them for the whole of the time I've been here and I've been here for over three months now; throughout that time, I've been incontinent several times. I've never stopped taking the strong painkillers!)

When I could walk; at night I found myself struggling too (thought this was my quatiapine, but now I'm not so sure)

Struggling too talk because I forget what I'm saying, so can't complete sentences. Sometimes I don't even make sense, forget what I've said and repeat myself; and come out with random stuff sometimes.

Taking longer than usual too read stuff because of my eyesight issues.

Troubles concentrating. (will read something and then forget what I'm reading. The same for listening too stuff.

Saying stuff then a few hours later, forgetting what I said

Also I can't stop swearing and I get angry at anything and everything

I've had a urin infection for over three months and it's reaccuring and the last one was an e coli infection.

(when I could walk) At night, when it's dark; I try too stand up but quickly loose my balance and fall into things

I climbed a mountain in the lake district once and I struggled. Once at the top, my legs could no longer hold my body weight. This caused me too repeatedly fall over. My dad had too help me down and it was so hard that I kept falling, getting up was also very hard.

I've fainted several times and I got a black eye by fainting once.

I don't really remember this but, before being admitted; apparently it looked like I passed out, my eyes were rolling too. All I can remember is feeling very low and just out off it.

I'm having massive identity crisis, where I'm questioning who I am now and even my own identity. (voices in my head told me that if I just woke up one day, I could just push everything about me away and sayim someone else. I was convinced this would help me. I was going too deny my identity and change how I look and who I was, change everything about me)

A horrible sore throat (some people thought it was oral thrush as I have a white tongue)

Increasing pain and sickness (my pain is just unbearable right now and it's just getting worse every hour and every day; as that gets worse, so does my sickness)

Freaking out about stuff (so on my first night in AAU; I had these horrible nightmare dreams, where I was just floating (very complicated) then suddenly I had a reality shock of where I was, but when I woke up, it felt like I had just come back too life. Gasping as I woke up. I didn't even realise I had gone to sleep, so I screamed. It honestly felt like i had just been resuscitated back from the dead. This obviously scared me.
However then I thought I heard myself scream over and over again, like they were watching a recording off me. I thought the room had like an upper office with like a huge glass window, so that they could see us. I thought I heard them say "the doctors gonna want to see this"
Then later "why would you test on her, it's just her first night"
I then thought they had put something down my tube and done a test on me, too make me have the nightmare dream and have that reaction and feeling of being resuscitated back too life.
Then later on I thought I heard "liar, liar, its all in your head"

The next evening/night, I thought they were having a secret meeting about me in the next room. My dad said no one was talking about me, but I could "hear" them. It's like I could hear it and my dad couldn't.
So I heard t

Also I don't know if this is relivent or not but I have got this internal itching down below that is a mystery too my doctors

So I've got various different diagnosises and my symptoms are a mystery too my doctors.
I have been diagnosed with severe depression, anxiety, anorexia, BPD (supposedly) autism, a rare chromosome deletion called 2Q37.3 and ehlers danlos syndrome.
However I think I have encephalitis and that is the cause off my mystery symptoms and illnesses.
I also have an ng tube due too NY anorexia and have been sectioned since the 12th of July 2018. I haven't eaten anything solid since September 2017 and I lost my hunger very very quickly! I also haven't drank anything for over a year and a half now and my first disappeared quickly too!

So my immune system has always been low and I catch infections really badly and they are always very hard too get rid off.

Around the age of 17 I overdosed and was told that if I had taken just one more tablet, I would have died. I was told that I was in the CCU for a while but i don't remember anything other than be in in a strange ward with a cardiac machine. Quite freaky really!

Growing up I remembered struggling too balance and walk, this caused bullying.

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@horselover7216 I read through your post and you are on a lot of drugs including morphine. I'm not a medical professional, but I had some experience with my mom in the hospital after she broke her pelvis, and they were giving her morphine and she was getting overdosed. When the next nursing shift came in they dosed her again without checking when the last dose was. I got a supervisor to come to the room to see her. She was like a rag doll and had trouble staying awake and couldn't hold up her head or keep her eyes open. The drugs suppressed her breathing, so she would have long pauses between breaths. She also halucinated similar to what you describe. She thought her bed was vertical up on a ledge and panicked because she thought could fall out of it, and she thought I was somehow standing on a wall looking at her and she didn't know how I could do that. She also was hearing cats meowing and thought they were in her stomach. That was all from too much morphine and tylenol pain killers together, and after cutting back on the morphine she got better. Some people don't do well on morphine. It would be worth asking your doctor if the combination of drugs could be causing a problem for you and if they are necessary. They should explain why you need them, and if someone else is advocating for your care, such as your parents, they should discuss this with your doctors.

I know I have been wrong before, thinking the worst, but since I'm not a doctor, I don't have the qualifications to diagnose myself and it's very easy to believe something is serious if you don't understand the entire picture. If I understand your post correctly, do you have a feeding tube? My dad had that, and I had to feed him with it when he could no longer swallow due to old age. It is important to get nutrition and fluids that your body needs. I know this may be frightening for you and might not make sense, but sometimes we have to trust our care to someone else. I have had to do that too after I had spine surgery, and I had to be patient and embrace the little bit of recovery that I had every day. It was a long recovery for me, 3 months in a neck brace, and then rehab after that. I thought it would be terribly painful, but it wasn't because I relaxed and just accepted that I needed to rest. The pain pills nauseated me, and I found I could manage without them. That was a surprise to me, and I got better each day.

I think from your name, you must like horses. I do too, and I have an older horse who helped me a lot while I was recovering from my surgery. It was 7 months before I could ride him, but trail riding just at a walk was the best therapy I could have to regain my strength. Also thinking about my horse gave me something good to think about instead of worrying. We can get trapped worrying too much because it is a survival instinct to look for danger. That can trap us in frustration and the stress of all of that is awful. The good news is that when we recognize that this happens so easily, we can choose our thoughts and think about positive healing things. Horses are very healing, and my horse always watches me where ever I go, and when I turn my back, he'll steal a carrot out of my pocket. Find something that you can think about as a "safe place" where you can go in your mind with your thoughts anytime you feel a need to escape. I have used that during painful testing and it helped me stay in control and calm myself. I had lots of fears about medical tests that caused pain, and this worked for me. I have even used photos of places I love to look at for a mental escape. I hope this gives you some things to think about and that it helps. I send you my good wishes.

REPLY
@lisalucier

@horselover7216 – if you are not feeding through the tube, are you now eating regular solids, etc.?

I thought this thread on starting with a new specialist might be of interest to you and give you some ideas for interacting with your advocate/medical team https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/.

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No. I wasn't eating normally. On the 5th day (yesterday) they threatened too sedate me too feed me.
Eventually my dad convinced me too willingly have it instead. I feel so low though and was personally fine being sedated 😑

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@jenniferhunter

@horselover7216 I read through your post and you are on a lot of drugs including morphine. I'm not a medical professional, but I had some experience with my mom in the hospital after she broke her pelvis, and they were giving her morphine and she was getting overdosed. When the next nursing shift came in they dosed her again without checking when the last dose was. I got a supervisor to come to the room to see her. She was like a rag doll and had trouble staying awake and couldn't hold up her head or keep her eyes open. The drugs suppressed her breathing, so she would have long pauses between breaths. She also halucinated similar to what you describe. She thought her bed was vertical up on a ledge and panicked because she thought could fall out of it, and she thought I was somehow standing on a wall looking at her and she didn't know how I could do that. She also was hearing cats meowing and thought they were in her stomach. That was all from too much morphine and tylenol pain killers together, and after cutting back on the morphine she got better. Some people don't do well on morphine. It would be worth asking your doctor if the combination of drugs could be causing a problem for you and if they are necessary. They should explain why you need them, and if someone else is advocating for your care, such as your parents, they should discuss this with your doctors.

I know I have been wrong before, thinking the worst, but since I'm not a doctor, I don't have the qualifications to diagnose myself and it's very easy to believe something is serious if you don't understand the entire picture. If I understand your post correctly, do you have a feeding tube? My dad had that, and I had to feed him with it when he could no longer swallow due to old age. It is important to get nutrition and fluids that your body needs. I know this may be frightening for you and might not make sense, but sometimes we have to trust our care to someone else. I have had to do that too after I had spine surgery, and I had to be patient and embrace the little bit of recovery that I had every day. It was a long recovery for me, 3 months in a neck brace, and then rehab after that. I thought it would be terribly painful, but it wasn't because I relaxed and just accepted that I needed to rest. The pain pills nauseated me, and I found I could manage without them. That was a surprise to me, and I got better each day.

I think from your name, you must like horses. I do too, and I have an older horse who helped me a lot while I was recovering from my surgery. It was 7 months before I could ride him, but trail riding just at a walk was the best therapy I could have to regain my strength. Also thinking about my horse gave me something good to think about instead of worrying. We can get trapped worrying too much because it is a survival instinct to look for danger. That can trap us in frustration and the stress of all of that is awful. The good news is that when we recognize that this happens so easily, we can choose our thoughts and think about positive healing things. Horses are very healing, and my horse always watches me where ever I go, and when I turn my back, he'll steal a carrot out of my pocket. Find something that you can think about as a "safe place" where you can go in your mind with your thoughts anytime you feel a need to escape. I have used that during painful testing and it helped me stay in control and calm myself. I had lots of fears about medical tests that caused pain, and this worked for me. I have even used photos of places I love to look at for a mental escape. I hope this gives you some things to think about and that it helps. I send you my good wishes.

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I missed four? Days off dyhidrocode and oramorph so my psychiatrist decided too stop them. Not relieved my symptoms though 😑

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@horselover7216 Why did you get so bad you wanted to die? By not getting the nutrition your body needs that is what you would do. COnsider all those in your life ,parents,husband,kids Loved one I had to give nutrition by tube to alot of people who couldnt eat from diseases or surgerys gone wrong. If your healthy why would you refuse food ?

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No. Omg this is hard too type and too even write about myself; because I'm in hospital and theres something wrong with me and no one knows why..
Just can't fight for tests anymore.. 😭

I'm literally alone!

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@lioness

@horselover7216 Why did you get so bad you wanted to die? By not getting the nutrition your body needs that is what you would do. COnsider all those in your life ,parents,husband,kids Loved one I had to give nutrition by tube to alot of people who couldnt eat from diseases or surgerys gone wrong. If your healthy why would you refuse food ?

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I didn't because off anorexia. I want too die too but not why.
Getting (yeah… Forgot what I was saying😐)
Getting no help 😭
Think it's encephalitis causing this… 😩

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@horselover7216

I didn't because off anorexia. I want too die too but not why.
Getting (yeah… Forgot what I was saying😐)
Getting no help 😭
Think it's encephalitis causing this… 😩

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@horselover7216 I feel so bad for you I wish I could wave my hand and your problems would disappear . You said you anorexia? Have you told your psychiatrist this? Somewhere someone has to have done research into this and found a solution .

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@horselover7216

I didn't because off anorexia. I want too die too but not why.
Getting (yeah… Forgot what I was saying😐)
Getting no help 😭
Think it's encephalitis causing this… 😩

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@horselover7216 Can we talk about bullies? You mentioned this. The thing about bullies is that they want to make you believe something about yourself that makes you feel bad. I know when you are young, it's hard to understand what they are doing and you start believing what the bully says about you. A bully is a person who feels bad about themselves, and they only feel better if they can be powerful and make someone feel worse than they do.

When you get into a crisis, you might still be thinking and believing bad things about yourself. Most people won't see you that way, they will want to see the good in you. Bullying was a hard thing for me in my life too. I grew up very shy and picked on. I couldn't separate in my very young mind the pain of teasing and physical bullying, and when I had to go to the doctor or dentist for something that was going to hurt, I developed a fear of medical people. To me it was just more bullying and my mom's explanations just minimized my feelings and she teased me for being scared. This fear controlled my life and stole my confidence in everything. I didn't feel safe. When I was 5, it almost cost me my life when I was trying to get away from my brother who was going to hit me. I rode my little bike as fast as I could to get home, and stopped across the street from my house, looked both ways, and then rode my bike across the street. There was a car coming that I didn't see, and it screeched to a stop within a foot of hitting me. I got no sympathy for my fear and I was punished and my brother was not. My parents believed it was my fault and they didn't talk to me about that. As a 5 year old, I didn't know how to process that fear and I carried this burden for many years. It was years later as an adult that I realized I did not have glasses when I was 5, and it wasn't my fault. I was nearsighted and couldn't see the car in the bright sunshine and because of the stress of running from fear. I don't know who saved my life that day, but I am grateful, and I probably gave them a horrible scare. So I grew up in survival mode and trying to be invisible to my siblings. I worked hard in school and my siblings thought I was making them look bad by being good at school and well behaved, so this pattern of jealousy just continued until I was able to get away from home and out on my own.

I still carried these fears inside, and 3 years ago, I had to face my biggest fears because I needed spine surgery. I had been hurt in a traffic accident 20 years earlier, but I told myself I would be OK. The disc in my neck deteriorated and I had bone spurs growing into my spinal cord. When I realized that I really was hurt in the car accident and it caused this problem 20 years later, it brought back the subconscious fears of the day I almost lost my life at 5 years of age. I didn't know that was feeding my anxiety and panic attacks. I worked through those feelings and it stopped the extreme anxiety that I had been having about spine surgery. I got myself through all of it by using my creativity and music to calm my fears and I let myself feel everything. I had to stop thinking like a 5 year old. I was grown up now, and that thinking about fear and pain avoidance wasn't serving me well. I overcame all of it, and that is why I am here to teach others how to address their fears. The first thing you do is make friends with your fear and figure out where it came from. No one is born afraid. This is all learned behavior, and you can chose to unlearn it. It is an awful burden to carry. Let go of other's opinions about yourself and reach out to people who do care about you and who have your best interest in mind. For me, my best support came from friends, and from loosing myself in creativity that healed my soul. For everything that I accomplished in my art work and paintings, I believed more and more in myself and my abilities. It was work to develop talent, and no one could take the credit for that from me.

I believe that you want to get better. Anorexia seems to be the way that you are punishing yourself. I want you to know that the people who are here on Connect are helping others out of their own love and compassion. Fear and love are opposite emotions. I have heard it said that love is letting go of fear. I know that it is true. You have to love yourself enough to let go of the bad stuff, and it is hard to do that, but it is worth it to live with love and self forgiveness. We all carry those burdens until we figure out how to let them go. This is what happens as you get older if you question the things that you believe in that are holding you back.

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@jenniferhunter That was nice of you to tell this story from your past You where brave then and now ,not to let other people define you

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@lioness

@jenniferhunter That was nice of you to tell this story from your past You where brave then and now ,not to let other people define you

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@lioness Thank you. I think we can lead by example and there are lessons everywhere in life if we are willing to receive them.

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Hi,
I'm sorry, I want too reply but my brain is just empty.. Cloudy.. Can't think of anything anymore.. Can't even type..
Feels like my body is just shutting down and can barely feel anything anymore… Not even emotions.
I went from out off control anger, too nothing…
I can just shut my eyes and just kind off drift off…

How do you go from, severe pain too just a dull ache? It's like it's there, but not there; if you know what I mean..

How do go from pure anger, too barely anything..

REPLY
@lisalucier

@horselover7216 – if you are not feeding through the tube, are you now eating regular solids, etc.?

I thought this thread on starting with a new specialist might be of interest to you and give you some ideas for interacting with your advocate/medical team https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/.

Jump to this post

I'm sorry, I want too reply but my brain is just empty.. Cloudy.. Can't think of anything anymore.. Can't even type..
Feels like my body is just shutting down and can barely feel anything anymore… Not even emotions.
I went from out off control anger, too nothing…I can just shut my eyes and just kind off drift off…
How do you go from, severe pain too just a dull ache? It's like it's there, but not there; if you know what I mean..

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