Discussion Anyone here terminal or with disease including chronic/immunological symtoms?

[ClaireBear31]

Yes!! I have lupus which causes a great deal of pain and has attacked everything, including the myelin sheathing around my nerves so I now also suffer from neuropathy. The only medicine that helped the pain had such horrible side effects that I couldn't stay on it. Then two years ago I was diagnosed with Sjogren's AND Rheumatoid Arthritis as well. My joints on x-rays are clearly eroded and deformed. I'm going to be severely disabled, and the pain is ridiculous, yet doctors don't seem to care. People don't seem to realize that just getting through the workday is a huge achievement. I'm so tired and tired of hurting.

 

[Deleted member 1465]

I have no idea what's wrong with me and neither do the docs.
My bowel doesn't work without excessive medication (which ain't pretty). I have to pee every half hour day and night so I'm almost housebound and barely sleep.
And ofc I have the depression and anxiety that goes along with chronic illness and lack of sleep.
They say I'm not diabetic and that it might be diabetes insupidus but the test for that is eight hours without fluids. Unfortunately the bowel medication is in water and if I don't take it for a day (and there's a lot to drink) then I'm in obstructed bowel territory. Means I'm contraindicated for the fluid deprivation test.
Sometimes I'd love to have something that I knew what it was so people would treat me with a little more respect.

 

[Backwood_tilt]

@Underscore

that is really rough. I spent the first five years of my twenties without a diagnosis for a crippling chronic disease. I didn't even talk about it to others cause I was so used to being dismissed.

Many symptoms I have I still don't know the root cause of, and have no treatment for.

 

[¡!¡!¡!]

I have hypertrophic cardiomyopathy (genetic) and polyclonal b lymphocytosis (diagnosed in 2019, a VERY rare haematological disease, this is a long story, getting diagnosed was very complicated and rough).

 

[yetme]

It's all started with Crohn 2 years back, then neurological disorder, and then lungs, heart, joints, brain.. I finally was diagnosed with Chlamydia infection and it's untreatable. If they tell you that you have immunological disorder or Crohn disease then there's more likely a pathogen behind this. Lyme, Chlamydia, Mycoplasma, Babesia you name it. If I could go a few years back I would start antibiotics right away before thosebugs went through my guts leaving a mess behind. Now I can't take any meds due to my intestines are an open wound... People like to think that they are on top of the food chain.. but no.
I hate God. Who the fuck creates a world like this? With diseases, pain and suffering.. I want to kick that fucker in the balls when I see him. not sure I'm going to heaven tho. but if someone asks me what is hell? well this is it. we are living it right now

PS: if you have Crohn or other weird shit that asshole doctores call immunological disorder, just try antibiotics for a month and see if you get any improvements. Just buy a pile of antibiotics online azithromycin and doxycycline and take them for a couple of moths. don't worry they won't kill you. I spent last 6 month on 4 antibiotics protocol and I felt decent, but then resistance built up and everything stopped working.. what a shitty universe.

 

[Backwood_tilt]

I hate God. Who the fuck creates a world like this? With diseases, pain and suffering.. I want to kick that fucker in the balls when I see him.

I'm not religious, but if that guy takes a human form i'm tearing his ass up on sight.

 

[MsMaudlin]

Not terminal, but I have fibromyalgia, osteoarthritis and lymphedema, they are slowly killing me.

 

[Margimet]

Diabetes (with retinopathy, neuropathy and nephropathy), celiac disease, hypothyroidism, hashimoto and adrenal fatigue. I can't stand it anymore!

 

[yetme]

Diabetes (with retinopathy, neuropathy and nephropathy), celiac disease, hypothyroidism, hashimoto and adrenal fatigue. I can't stand it anymore!

Oh man, I feel ya! how bad is neuropathy? I'm in constant neurological pain . Sometimes my whole body just flares up..

 

[MachinaArcana]

It's peanuts compared to what many of you are going through, but I have moderate to severe COPD. I'm 48, my mom had it as well, and died at 57. The final years of her life were hell, on oxygen 24/7. Continuously feeling like she was suffocating.
I quit smoking for many years, which kind of halted the process of deterioration, but started smoking again last year.
It often makes me feel guilty towards those who really do try to improve their health and take care of themselves.
But I simply don't give a shit anymore. Planning my exit very soon.

 

[OneBigBlur]

Yeah, the terminal disease called life.

I have Fibromyalgia though and some other stuff.

 

[Heady_Cerebrum]

At the age of 15 I was diagnosed with sero-negative juvenile rheumatoid arthritis. I've had it ever since, until I moved and now the rheumatologist doesn't think that's what it is, but does think it's an inflammatory condition of my muscles and perhaps some other things going on as well. My whole body experiences pain in one form or another each day. My hands are typically bad, always feel inflamed, resistance in moving and pain all over, even in the joints. I have recently started to have muscle contractions/spasms in my upper back/neck/shoulders, at times it can be quite violent and the pain does at times literally take my breath away. I find walking difficult, especially if it's more than just a little. I also have difficulty driving because of my hands and feet, I don't leave my little city because I just can't drive that far. My foot gets so badly cramped and my hands get extremely sore. I used to get horrible churning sensation in my feet, they would literally feel like they were being burned, and I have some experience in that area. Thankfully I seem to have that under control.

My rheumatologist is sending me to a neurologist to have my muscles tested, and whatever else is on the req. I'm quite fearful of the potential diagnoses or the lack of diagnosis. Lupus wouldn't surprise me, I don't think I've ever been tested for Lyme disease. Part of me really wants a diagnosis so I know what I'm up against, but I'm fearful it's going to be something that has a horrible ending. I don't want a horrible ending to my life. Even suicide is just the lesser evil of the options.

I have been dealing with chronic pain since I was around 10yo when I had to quit piano lessons because my hands hurt too much. I'm 35 now.

 

[JustVisiting]

At the age of 15 I was diagnosed with sero-negative juvenile rheumatoid arthritis. I've had it ever since, until I moved and now the rheumatologist doesn't think that's what it is, but does think it's an inflammatory condition of my muscles and perhaps some other things going on as well. My whole body experiences pain in one form or another each day. My hands are typically bad, always feel inflamed, resistance in moving and pain all over, even in the joints. I have recently started to have muscle contractions/spasms in my upper back/neck/shoulders, at times it can be quite violent and the pain does at times literally take my breath away. I find walking difficult, especially if it's more than just a little. I also have difficulty driving because of my hands and feet, I don't leave my little city because I just can't drive that far. My foot gets so badly cramped and my hands get extremely sore. I used to get horrible churning sensation in my feet, they would literally feel like they were being burned, and I have some experience in that area. Thankfully I seem to have that under control.

My rheumatologist is sending me to a neurologist to have my muscles tested, and whatever else is on the req. I'm quite fearful of the potential diagnoses or the lack of diagnosis. Lupus wouldn't surprise me, I don't think I've ever been tested for Lyme disease. Part of me really wants a diagnosis so I know what I'm up against, but I'm fearful it's going to be something that has a horrible ending. I don't want a horrible ending to my life. Even suicide is just the lesser evil of the options.

I have been dealing with chronic pain since I was around 10yo when I had to quit piano lessons because my hands hurt too much. I'm 35 now.

I'm so sorry. I know the frustration. I'm here if you'd like chat.

 

[Shero]

vEDS+POTS
Hadn't major complication yet.

 

[JustVisiting]

Thank you. The sad thing is is that I'd rather have a physical disease than a mental one any day of the week

I get what your saying, but trust me, you don't want a physical disease.

Hi, I just read your story and I really feel for you. I got diagnosed with cancer a year ago and I am just really depressed now. I don't do things I used to love and I hate my life right now. I'm stage 4 and it will only be a matter of time before its terminal. No symptoms from the cancer right now, been going to chemotherapy each month to keep it at bay. Lost all my hair, self esteem is gone, no enjoyment in anything really. Been to a psychiatrist who specializes in cancer but it's really no help. Told them I'm suicidal and they just want to put me in the hospital, whats the point.. Anti-depressants just make me sleepy and hungry. I'm only 26 and I just want it all to end.

Please PM me. I know what you are going through.

 

[somuchpain1]

Yes not terminal but just as bad if not worse

 

[Kristicide]

I have chronic migraine which for me equals daily (for 20 years). I'd rather be terminal knowing there'd be an end point. I've taken billions of drugs, treatments, lots of doctors, hospitals. Sometimes I get a drug that gives some relief (temporarily) a very small few had longer relief periods but my body eventually reverts back. Living with such severe pain isn't living. It's then when I really feel I need to ctb. Just to be in peace. I hate my brain. I also have ulcerative colitis but it's in remission and luckily it only flares up 2-3x year so it's not a big problem.