Chronic Illnesses and Physical Diseases Megathread

[PhDone]

ME/CFS here. 30 years.

Just joined, have ME too. Absolutely hideous disease. Cant imagine 30yrs of it.

 

[wanttodie12345]

I have multiple chronic physical and mental conditions that have been mostly ignored since childhood. Doctors tend to think it can't be that bad or I'm making it up. Neurological symptoms, joint pain, spine degeneration, cardiac issues. My careers are not accessible to me any longer and I've been hospitalized against my will while psychotic from lack of sleep, so have difficulty accessing ctb resources. Can't drive and even if I wanted to try, my car has fallen into disrepair while my health has been majorly declining. I want a peaceful way out, I'm so tired of watching my hydration and food and sleep trying to get back to a state of health I'll never achieve. It's terrible, but I find myself wishing my diagnoses were terminal so I could access palliative care and medical aid in dying. Though I fear people with those kinds of diagnoses are suffering in a way I can't imagine.

 

[TheFallen]

I have multiple chronic physical and mental conditions that have been mostly ignored since childhood. Doctors tend to think it can't be that bad or I'm making it up. Neurological symptoms, joint pain, spine degeneration, cardiac issues. My careers are not accessible to me any longer and I've been hospitalized against my will while psychotic from lack of sleep, so have difficulty accessing ctb resources. Can't drive and even if I wanted to try, my car has fallen into disrepair while my health has been majorly declining. I want a peaceful way out, I'm so tired of watching my hydration and food and sleep trying to get back to a state of health I'll never achieve. It's terrible, but I find myself wishing my diagnoses were terminal so I could access palliative care and medical aid in dying. Though I fear people with those kinds of diagnoses are suffering in a way I can't imagine.

I feel you my friend

 

[dr18]

Hi all, I would like to share my struggles with you all, about my lung troubles! I am a mid 20's woman, UK.

Late April this year my right lung collapsed spontaneously while I was at work (I work in drug development), searing shoulder and collar bone pain on my right side coupled with sweating, and an impending sense of doom appeared out of nowhere. I brushed it off at first as an anxiety attack but I felt a sudden urge to seek help. Paramedics arrived and assumed I was having a blood clot ,as I am on birth control, but an ECG/Blood Oxy/Pulse came back all normal. I was sent to hospital in an ambulance for further tests. A chest X-ray was peformed at hospital and I was discharged with 'muscle sprain' by the doctor. I returned home and went to work the next day with major breathlnessness and could hardly hold a conversation. Even coworkers noted it was odd. I felt pretty silly, I just went in an ambulance at my bloody work only to be discharged with a muscle spasm!? Well, I got a call later on in that day from the hospital apologising over and over again and that I do infact have a 'primary spontaneous pneumothorax' and I need to return immediately (they didnt check the xray results the day prior lololol). No chest drain was placed into my chest and treatment was to rest at home but I was cautioned to return once a week to monitor if the tear in my lung was healing. It was and I was seen by a lung specialist who told me this may reoccur and that it could be related to my period cycle (Catamenial Pneumothorax) as it happened on the first day of my menstruation.

Two months after, my second pneumothorax occured after I picked up my bath mat after showering. Same impending sense of doom, searing pain and the feeling of air bubbles rippling against my rib cage. I was kept in overnight at hospital with oxygen and scheduled for a pleurodesis surgery the week after. This surgery staples the troublesome right lung to the chest cavity wall via chemical means (talc) to prevent any more major pneumothorax. My period also started immediately after my second tear.

Surgery was fine but I am yet to even have my follow up appointment with a specialist to confirm that the surgery worked and to address my current issues. The woes of the NHS waiting list : (

Current issues being, I haven't felt the same since my collapses and surgery. Everyday my chest is in immense pain, on both sides, and when I am on my period these feelings are heightened. My anxiety is also extreme which is common place for pneumothorax sufferers. I haven't left my home in 8 weeks post surgery due to fear of it happening again. I'm on long term sick from my job that I absolutely adored as I cannot even commute to work without intense pain. If my lung collapses are related to my period (which I'm sure they are) that means I have endometrium tissue piercing into my chest cavity and threatening my heart and other major organs.

I have a silly logic. I don't want to suffer or be in pain. So I'll prolly CTB after I talk to my specialist and question him on my concerns of it being catamenial. I've been brushed off by the NHS medical system, misdiagnosed and not believed. I have a feeling it's because I'm a young woman and they couldn't care less or just have no clue about this lung stuff. When I bring up my concern of it being related to my period I genuinely get a zombie like stare from the doctors and no response...I feel like I'm fucking crazy.
My GPs are at a loss on how to help, I ring them about once a week telling them the pain is increasing. I also feel my right lung spasm inside of my chest cavity every few minutes and my surgery scars, especially where the post surgical chest drain sat, burn at night. I haven't had a decent sleep since they put me under for the surgery lol ! If death could be like being put under for surgery I'd be a very happy lady. God knows when I will next see a specialist, I've been told I'm on a waiting list for the actual waiting list itself so it could be years. I expect my left lung will collapse by then as the pain on that side of my body is increasing every day. Knowing I will have another medical emergency (statisically it's a guarantee) that might snuff me out is agonising. I would rather have control over my own death and via lung collapse is...not pleasant ! With each collapse the chance of it becoming fatal is pretty high, my right lung should hold up due to surgery but smaller tears can still occur even post surgery lol.

 

[lizzywizzy09]

Hi all, I would like to share my struggles with you all, about my lung troubles! I am a mid 20's woman, UK.

Late April this year my right lung collapsed spontaneously while I was at work (I work in drug development), searing shoulder and collar bone pain on my right side coupled with sweating, and an impending sense of doom appeared out of nowhere. I brushed it off at first as an anxiety attack but I felt a sudden urge to seek help. Paramedics arrived and assumed I was having a blood clot ,as I am on birth control, but an ECG/Blood Oxy/Pulse came back all normal. I was sent to hospital in an ambulance for further tests. A chest X-ray was peformed at hospital and I was discharged with 'muscle sprain' by the doctor. I returned home and went to work the next day with major breathlnessness and could hardly hold a conversation. Even coworkers noted it was odd. I felt pretty silly, I just went in an ambulance at my bloody work only to be discharged with a muscle spasm!? Well, I got a call later on in that day from the hospital apologising over and over again and that I do infact have a 'primary spontaneous pneumothorax' and I need to return immediately (they didnt check the xray results the day prior lololol). No chest drain was placed into my chest and treatment was to rest at home but I was cautioned to return once a week to monitor if the tear in my lung was healing. It was and I was seen by a lung specialist who told me this may reoccur and that it could be related to my period cycle (Catamenial Pneumothorax) as it happened on the first day of my menstruation.

Two months after, my second pneumothorax occured after I picked up my bath mat after showering. Same impending sense of doom, searing pain and the feeling of air bubbles rippling against my rib cage. I was kept in overnight at hospital with oxygen and scheduled for a pleurodesis surgery the week after. This surgery staples the troublesome right lung to the chest cavity wall via chemical means (talc) to prevent any more major pneumothorax. My period also started immediately after my second tear.

Surgery was fine but I am yet to even have my follow up appointment with a specialist to confirm that the surgery worked and to address my current issues. The woes of the NHS waiting list : (

Current issues being, I haven't felt the same since my collapses and surgery. Everyday my chest is in immense pain, on both sides, and when I am on my period these feelings are heightened. My anxiety is also extreme which is common place for pneumothorax sufferers. I haven't left my home in 8 weeks post surgery due to fear of it happening again. I'm on long term sick from my job that I absolutely adored as I cannot even commute to work without intense pain. If my lung collapses are related to my period (which I'm sure they are) that means I have endometrium tissue piercing into my chest cavity and threatening my heart and other major organs.

I have a silly logic. I don't want to suffer or be in pain. So I'll prolly CTB after I talk to my specialist and question him on my concerns of it being catamenial. I've been brushed off by the NHS medical system, misdiagnosed and not believed. I have a feeling it's because I'm a young woman and they couldn't care less or just have no clue about this lung stuff. When I bring up my concern of it being related to my period I genuinely get a zombie like stare from the doctors and no response...I feel like I'm fucking crazy.
My GPs are at a loss on how to help, I ring them about once a week telling them the pain is increasing. I also feel my right lung spasm inside of my chest cavity every few minutes and my surgery scars, especially where the post surgical chest drain sat, burn at night. I haven't had a decent sleep since they put me under for the surgery lol ! If death could be like being put under for surgery I'd be a very happy lady. God knows when I will next see a specialist, I've been told I'm on a waiting list for the actual waiting list itself so it could be years. I expect my left lung will collapse by then as the pain on that side of my body is increasing every day. Knowing I will have another medical emergency (statisically it's a guarantee) that might snuff me out is agonising. I would rather have control over my own death and via lung collapse is...not pleasant ! With each collapse the chance of it becoming fatal is pretty high, my right lung should hold up due to surgery but smaller tears can still occur even post surgery lol.

I felt this deep inside. Doctors don't give a shit about women. I swear their eyes all glaze over and they're half falling asleep if you even bring up periods. If we're not actively trying to concieve they don't wanna hear about you or know about you, even if your quality of life is severely impacted, even if the health repercussions are dire. It is neglect and if there was any justice in the world they'd lose their license or get sued to kingdom come for medical malpractice. I like to imagine there's at least a special place in Hell for them if it exists.

I am so sorry. My Dm's are always open if you want to talk.

 

[dr18]

I felt this deep inside. Doctors don't give a shit about women. I swear their eyes all glaze over and they're half falling asleep if you even bring up periods. If we're not actively trying to concieve they don't wanna hear about you or know about you, even if your quality of life is severely impacted, even if the health repercussions are dire.

I am so sorry. My Dm's are always open if you want to talk.

Exactly!! I got lucky my first lung collapse as the lung specialist who helped me, was a woman! Thank god because she was ever so caring and lovely and prompted me to get on other doctors butts if another collapse happens, due to her suspecting its relation to my periods. As it is a matter of emergency, if there is tissue threatening my chest cavity I will need literal sections of lung removed alongside other parts of my chest cavity (diaphragm).

This condition is rare and my heart sunk when I read it's relation to periods...Because I knew from that day on I would never be taken seriously ever again. Compared to other health issues I've had (Eczema, ptsd) this is going to be tough to be 'believed'. I try to push it from my mind til I speak again with a specialist to address my fears of this. For now, all I know is my lung might of just collapsed randomly...! Ugh I just remember I went A&E two weeks ago due to intense pain again and my GP wanting an X-Ray to confirm no new collapse and the A&E doctor's face just ... glazed over and he looked 'through' me as soon as I said "I'm on my period and these chest pains reoccur stronger on the first day of my period". He said nothing at all. Just offered morphine...Wonderful.

Thank you love, same to you if you'd like to chat.

 

[yellowjester]

@dr18
I'm sorry you're not being taken serious snough. Medicine has a history of... not being exactly kind to women. I know how doctors talk about their female patients behind their backs and it f--ing disgusts me.

The best advice I can give you is to bring someone with you to the appointment. It would make things a lot easier for you. It doesn't have to be a man, just another pair of eyes and ears to make sure they're not dismissing your pain.

 

[NikolaiK]

I have social anxiety and feel depressed whenever i am around people but feel happy when im on my own, i think i am possibly autistic. Despite my mental health problems my serious suicidal thoughts didn't occur until my chronic health problems started, i could've lived with my mental health problems as i had many goals and hobbies but my chronic health problems are making life not worth living.

I have arthritis, gut problems, chronic knee pain from an old inury that won't heal, vision problems (keratoconus, lots of floaters, light sensitivity), and worst of all my teeth keep rotting despite always brushing twice day, eating no sugar, and not smoking. I spend so much time looking after my teeth cleaning them with dental appliances, taking loads of supplements, mouth wash etc but the tartar and decay keeps coming back no matter what i do, i won't be able to keep up my health routines for ever because its so tiring. I am 26 and having degenerative health problems at this age means i have a long life of pain to look forward to. Also exercise is one of the things that keeps me motivated and mentally healthy so having joint problems is a big problem for me.

Thinking about suicide is so comforting for me, already secured my SN.

 

[HD72]

I have social anxiety and feel depressed whenever i am around people but feel happy when im on my own, i think i am possibly autistic. Despite my mental health problems my serious suicidal thoughts didn't occur until my chronic health problems started, i could've lived with my mental health problems as i had many goals and hobbies but my chronic health problems are making life not worth living
I have arthritis, gut problems, chronic knee pain from an old inury that won't heal, vision problems (keratoconus, lots of floaters, light sensitivity), and worst of all my teeth keep rotting despite always brushing twice day, eating no sugar, and not smoking. I spend so much time looking after my teeth cleaning them with dental appliances, taking loads of supplements, mouth wash etc but the tartar and decay keeps coming back no matter what i do, i won't be able to keep up my health routines for ever because its so tiring. I am 26 and having degenerative health problems at this age means i have a long life of pain to look forward to. Also exercise is one of the things that keeps me motivated and mentally healthy so having joint problems is a big problem for me.

Thinking about suicide is so comforting for me, already secured my SN.

U r blessed to find a way out. I can't use SN. I wish a u peaceful departcher. I'm sorry this life was not good to you.

 

[WholeHereafter]

Most debilitating and unbearable physical dxs are mitochondrial dysfunction and severe CFS/ME. Other known dx is small fiber neuropathy, potential autoimmune. There are others, but mitochondrial dysfunction and CFS/ME are what brought me to feel as though life isn't worth living.

 

[Catch-22]

Most debilitating and unbearable physical dxs are mitochondrial dysfunction and severe CFS/ME. Other known dx is small fiber neuropathy, potential autoimmune. There are others, but mitochondrial dysfunction and CFS/ME are what brought me to feel as though life isn't worth living.

I was diagnosed with the same chronic fatigue syndrome and fibromyalgia And then they sent me to a terrible neurologist that said I had peripheral neuropathy but never did a biopsy to see if it was small fiber. And because other issues I was having I went to a private doctor and she thought she would test me for Lyme disease and co-infections and I was positive for several things. Western medicine is clueless on these things so it's something to look into. Lyme disease is a lot of time the root cause for chronic fatigue fibromyalgia MS and several autoimmune diseases. I've had it for around 5 decades so it's taken over every part of my body. I don't know what country you live in but if you can find a functional doctor they can do the proper testing. A lot of people are exposed to Lyme disease bacteria but the reason why some people get really sick from it is because of different factors including genetics exposure to mold and other things that suppress your immune system. It gets complicated but if you're young hopefully you can turn things around for me it's too late.

 

[PhDone]

Most debilitating and unbearable physical dxs are mitochondrial dysfunction and severe CFS/ME. Other known dx is small fiber neuropathy, potential autoimmune. There are others, but mitochondrial dysfunction and CFS/ME are what brought me to feel as though life isn't worth living.

I goddam hate ME/CFS. So sorry you have this shit. Its utterly disgusting. I have a few other co-morbidities too. Theres actually no life in this illness.

 

[WholeHereafter]

I goddam hate ME/CFS. So sorry you have this shit. Its utterly disgusting. I have a few other co-morbidities too. Theres actually no life in this illness.

Truly. I'm sorry this is also your reality. So many people have no idea. It is literally a living death.

 

[PhDone]

Truly. I'm sorry this is also your reality. So many people have no idea. It is literally a living death.

It absolutely is. I sit in constant state of disbelief that this is what I am in. That there is no way out. How can you walk into this trap? Once you're in the trap, you look around and there is no way back. Its like a door slammed shut behind me and I'm locked in here with nothing. Wtaf. Ive scoured around the darkness for something, anything, to help me sit here. But I am tormented and tortured by this realisation. Somewhere deep into the trap there is a small, almost imperceptible, door. Will be painful to find and worse to get through. But looking for it is all I have now. I spend my days looking for it in the dark. Fortunately there are other darkened souls on this hunt too. They are actually some of the most wise and compassionate people Ive ever met.

Interestingly of course the trap and the hunt are something my family dont have any understanding of. Its like Ive fallen into an alternative Universe, where I'm living alongside them but not of their world anymore.