Discussion How many of you are here due to incurable health issues?

[Chockles]

I've already gone on way too long. Just waiting on my method & hopefully CTB by end of week. Can't do anything at all in excrutiating pain head to toe.

 

[stygal]

If I was physically healthy I'd be in a better state rn and definitely would try to make it work.
But not a single day goes by without me being reminded what a cripple fuckup I am. Even when the pain is at a minimum it's still not the same as having functional limbs.

 

[Thaneem]

Same here, minus the nerve pain. Exhausting all options but the PTSD from this is insane

Same surgery, same result—I read that carbamazepine or Lamictal can help decrease the spasms and help hyperacusis but I'm afraid of worsening tinnitus. It sucks.

Hold on - you had the surgery where they cut the tympanic and stapedial tendons and it didn't fix your symptoms either? Do you have flutterings and thumpings?
I never had hyperacusis fortunately and my true tinnitus is mild. I've heard the same about those meds and cymbalta but the idea of having to rely on a medication that a dr can cut me off of at any times just seems like postponing the inevitable.

 

[Thaneem]

Dude...they lasered mine too. This is crazy that two people with this extremely rare condition, who both had failed surgeries, are here.
How long ago did you have the surgery and did your dr give any explanation as to why you still have these symptoms?

 

[irememberinnocence]

Yes that's exactly why I am here. Thanks to MCAS, M.E., and connective tissue disease. Happy three decades to me! Aged before my time.

I'm incontinent, in pain from head to toe, daily allergy attacks, teeth ruined, losing my hearing, severe fatigue, memory loss, asthmatic, and can't eat properly anymore, so currently about 10 kg away from dead.

I don't want to CTB and will probably only attempt it if:

1. I come under too much pressure to accept life prolonging treatment. But hopefully that will not happen as I'm being outspoken about not wanting to pursue aggressive interventions and just being left to pass.

2. If there's no realistic way to make my dying process peaceful. I have to talk with the palliative care people about what would actually happen while I'm dying and whether I'd be in a lot of distress.

Overall I feel in a wierd sort of limbo. If my weight suddenly stabilises then I am not dying any time soon. But if it keeps going down then I'll be dead very soon. Pretty hard to navigate.

 

[Insomniac]

Severe anxiety. I can't eat more than 700calories/ day because of how tense I am all the time. Practically anorexic.

 

[Thaneem]

Not that long ago—I was told it could take 6 to 12 months for these muscles to settle but even the surgery isn't 100%. What meds did you try before or after?

If you're in the states and need a CTB friend, holler. We can talk "broken speaker effect" while deciding the best way to off ourselves. Sorry for the bleak humor.

Mine wasnt that along either, but its been over a month and I had a 10 hour long episode just the other day. I was also told it can take awhile to calm down, though its seeming less and less likely that will happen.
I never tried any meds. No doctor ever offered me any and I didnt really want to go down that road so I never pushed the issue. I have tried chiro and massage as Im pretty sure my MEM is neck and jaw related.
Yes, I'm in the states. I almost want to ask who your surgeon was because I know there's only a handful who do this surgery with a laser for our purposes, but I don't want to get too nosey into your business

 

[sanu189]

I'm so sorry, that's very difficult at such a young age. Is it ok if I drop you a PM to discuss EDS rather than clog up the thread?

I have EDS it's getting worse at age 26 I don't think I can go on anymore

 

[sanguineblade]

Count me in

whole right side burning/aching constantly due to rare condition
tinnitus, ear pain, hyperacusis, hearing loss, full feeling left ear, ear spasms (acoustic trauma)
snow vision
complete loss of penis sensation (accident)
back pain , severe pains in nails due to permanent acne pills side fx

 

[facel]

I have EDS it's getting worse at age 26 I don't think I can go on anymore

So sorry to hear that. What are your symptoms? When did they start?

 

[Shadowplay]

What are your criteria for distinguishing between these 2 categories? Also, what is the difference between "choose" & choose (to feel like shit)?

Oh wow apparently someone else on here is concerned with the proper use of inverted commas.

 

[Bleak]

This is the main reason I want to die. Ears, eyes and mouth are all fucked up. Starting to get disoriented and headaches if moving around or especially in a vehicle. Can't enjoy eating or listening to music. I can't even talk about it to anyone because it's hard to describe and they won't believe me. I don't have any diagnosis that can give credibility to my words. So I just suffer in silence and feel extreme inner desperation pretty much every day.

 

[Shadowplay]

I'm here cos I'm an incurable @$$hole. AMA.

 

[Siegfrida]

Chronic insomnia (has been going on for some 16 years by now), chronic neck pain. Right now I am still able to "fake wellness" (as someone mentioned above in this thread), but I am afraid it's only going to get worse.

 

[Silenos]

I'm here cos I'm an incurable @$$hole. AMA.

What's your favourite colour?

 

[Shadowplay]

What's your favourite colour?

Y'know I'm genuinely not sure; I have pondered this. I'm red-green colourblind by the way.

 

[Silenos]

I'm red-green colourblind by the way.

Ah, this explains everything!

jk xx

 

[Shadowplay]

Ah, this explains everything!

jk xx

I think being an incurable @$$hole explains a lot more...

 

[Briona55]

I don't want to disclose what physical health problems I have but neither are cared about by the medical community and never will be and neither have any treatments that really work for 90% of people. Certainly none of it has worked for me. Along with diagnoses of depression, PTSD, borderline personality disorder / eupd whatever dumb label they're giving it now (only advice I have for anyone don't ever get diagnosed w this you'll be vilified and turned away from every service that's meant to help u at least that's my experience with the stellar health service here anyway ha) , generalised and social anxiety, it's way too much for me to deal w..I'm in so much physical and mental pain every day, I have no energy, I'm a bit under 30 now (my final age) but I feel like I'm trapped in the body of a 80 year old and I'm only on this earth to be tortured but whatever woe is me ahahah my now ex therapist told me to stop quit acting like a victim so I guess I should maybe listen to that instead of just getting offended

 

[freelifexit]

schizophrenia, started this year. before that I lived a normal life. I can't do anything, I can't concentrate, it's hard even to just walk. I lie in bed most of the day.

 

[Fractal]

Horribly treated Type 1 diabetes that was neglected by my parents since I was 4 years old and I continued to abuse myself when I started to do my own injections. No one taught me how.to count carbs/get on top of me about it, I ate whatever I wanted everyday, no nurses checking up on me from K-12, except for one time when I was 15 and the school nurse told me i needed to take my diabetes seriously, but by then I was so deluded that I was doing okay because I had daily lows that made my horrible numbers look normal so I had a good A1C. My limbs and toes and fingers are going numb and they'll likely be amputated in the future. So a combination of addiction, abuse, neglect, stupidity, ignorance, and undiagnosed mental illnesses like depression, social anxiety, Asperger's, and learning disabilities led me to being the world's worst diabetic. I basically lied to my Dr my entire life. Now I have Alzheimer's like symptoms because of daily lows, highs, and my blood sugar basically looking like a roller coaster almost everyday of my entire life. I think eating whatever I wanted as a child and no one really caring had a massive impact on my developing brain, but I also continued this as an adult, so it's my fault as well. I'm just really stupid, but I wasn't outwardly "disabled" looking, so everyone thought I had it under control I guess. I'm CTB, but we all know a lot of us were murdered in a way. Whether it's direct or indirect. Our CTB was a team effort lol.

 

[wait.what]

Autoimmune shitstorm + effects from a miserably abusive childhood. The two tend to go together. There's a book about the subject called "The Body Keeps The Score," if you're interested.

 

[GuylumBardot]

Post Finasteride Syndrome. I died when I took the pills. Just here toying with the idea of finishing the job. :/