I feel like giving up on life

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If you're 30 there's a lot of reasons for hope. A bit of symptom reduction over the next few years could get you through to a time when there is a cure.

Stay strong through the bad times. The bad times are bad. really bad. very dark and very deep. In those times there is not much to hang onto. So hang onto this: We are here for you. Not many people are on your side, but we are. Suicide is not a good option at all. A friend of mine took his life almost a year ago. It ruined so many other lives in the process. Parents, friends etc. It's awful for others. If you want to talk, please get in touch.

Also, theres a lot about our disease doctors don't know and won't engage with. But dark thoughts like that is something they can act on. I'd really recommend a doctor's visit where you talk mental health. good luck!
 

drob31

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It really sounds like an autoimmune condition that's attacking the joints. If you do all the major autoimmune tests, there are other ways of shining light on the culptit, such as cytokine tests:

https://www.truehealthlabs.com/TH1-TH2-Balance-Panel-Basic-p/lc_815250.htm

Also, cyrexlabs has a ton of other autoimmune tests.

There are supplements and drugs that suppress cytokines which are some of the chemical messengers responsible for the attack, as well as nuking B-cells with things like rituximab. I'm not suggesting you do those things, just that some people consider those options once they have a better picture.
 

Shoshana

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@Murph and @Hilary

and others who have responded on this post,

I want to thank you, for your posts. I am suffering a lot lately too,
and took some strength from reading your posts, too.

Murph, I am very sorry about your friend.

And thank you for those insights.

And Hilary, and others, please hold onto hope for /with me, as well. Thank you.
I rarely will admit I need any.
 

Konflict

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I don't think there will be any symptom reduction for me.....who else develops osteoarthritis in 10 weeks? I'm pretty much couch and bed bound 24/7. My joints all crack and are hypermobile, I have spinal degeneration, my teeth are loose, and no doctor can diagnose me....I truly think I'll be in a wheelchair that I can only move with one of those joystick things within a year. And who knows how much longer I'll live with my body deteriorating at such a rapid rate? Doctors don't care....even if there was a cure for any disease big pharma won't let it spread.
 

Tunguska

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I don't know the odds of this being autoimmune like drob31 writes, but regardless a referral to a competent rheumatologist afterward is worth it to rule out causes alone. Meanwhile all you can do is support your body and mind as best possible. It may very well be enough to recover from that, with some time.
 
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Hugo

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But you did get a referral to UCSF genetics department in San Francisco. So they are doing something and something may come out of that.

When I got lyme on top of my ME my body deteriorate fast from relative mild ME to severe ME.. I experienced flashes in my sight, electrical shock in my body, pain in my joints and muscles, constant headaches, stronger POTS symptoms and the list go on and on. This went very fast and in three weeks I had all symptoms and I also feared I would die or end up like a vegetable. That feeling of deteriorating completly is a terrible feeling.

I have no clue of what will happen with you but generally thats the kind of feeling of horror that will happen to a person getting much worse fast. Its the way our mind works. Generally its a tad to much since we see the cykle and feel it in our body. We have a strong memory over how it was before and feel that the symptoms attack us. At this moment you are kidnapped of your symptoms in your mind aswell you will see it more rational over time. You need someone to help you and guide you. Both to calm you down somewhat and see practical solutions and hope.
 
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Konflict

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I just feel this isn't autoimmune. Idk if anyone here remembers a user named Douglasmitch.....he also took saw palmetto and finasteride, and after he took arimidex and aromasin and clomid (I took vitamin E and K2 which affects hormones in the same way, albeit not a drug) and a year after he took the AI's he died. There's a PFS (post finasteride syndrome) website and he quickly deteriorated. Lost all strength in comnective tissues, couldn't move his eyes, couldn't pass a stool without enemas, had to wear a neck and back brace, lost 80 pounds in a year, and his stomach stopped working this past July. He had a hair metals and minerals test done and he was below the 2.5% percentile on many of the essential minerals.

He committed suicide in September 1 full year after his crash. I'm the only other member in the PFS site that has anywhere close to his symtoms, many of them the exact same and the same timeframe which brought them on. Now I know everyone Is gonna say I'm not him, there's many things it could be, that I'm crazy, but I feel it's the same thing which he has because we both used Aromatase inhibitors. I have looked everywhere online and the only thing close to mine and his cases are cipro users who suffered permanent side effects. No doctors even beleive finasteride can cause this because they are told to protect Merck made pharmaceuticals. I feel I have some sort of total endocrine shutdown. Unless you think taking methylated B vitamins that causes self induced overmethylating can alter collagen DNA ?
 
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Konflict

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Here's some screen shots of Douglasmitch (his name wa QuantumFaith on solvepsf.com) and his experiences.....no doubt I have the same thing. I literally have nothing to be hopeful for.
 

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Konflict

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Here's a video he made last year. I think me and him induced blockages to hormonal pathways. Hormones may be the strongest substances in the body with the most influence on our physiological system. Every time I move a tendon or joint pops or makes a Gritty grinding noise. Chest bone pops and that's held together by collagen. Joint hypermobility is only caused by EDS or estrogen issues. I just don't want to suffer....this will not get better. This isn't Lyme, Adrenal fatigue, lupus.....connective tissue disease do not have cures, and I've im suffering this bad where I had to quit my caretaking job and am regulated to my bed and couch all day, what do I honestly have to look forward to? Doctors are trained NOT to treat you if a big pharma drug makes you ill.....that's why they have settlements. They profit so much off these drugs that they set aside around $30 million or so for kicks when the sick people start popping up.
 

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Hilary

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@Shoshana I'm so sorry to hear you are also having a tough time. I think we all need hope but of course it's hardest to find when we need it the most. For all the reasons mentioned in earlier posts, there is probably more hope now than there ever has been before.

@Konflict - I don't have anything medical to contribute though there are lots of knowledgeable people on here as you'll know. At least the doctor you have just seen took you seriously enough to give you a referral - rather than telling you it's all in your head which is so insulting. I hope it doesn't take too long for you to see someone. I didn't know much about Douglasmitch but I remember the name and am very sad to hear about him.

Thinking of you both x
 

Konflict

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Idk what to do at this point.....I don't want to be alive if I have to become a vegetable. I can barely even bend over, the osteoarthritis in my spine is so bad. I'm really on edge tonight I feel helpless and useless
 

AdamS

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Idk what to do at this point.....I don't want to be alive if I have to become a vegetable. I can barely even bend over, the osteoarthritis in my spine is so bad. I'm really on edge tonight I feel helpless and useless
Hi, i've been in a similar headspace to you over the past few months, debating whether to carry on every day, sometimes 30-40 times per day. It's logical to want to take control when you feel like there is no way out and you have something seemingly terminal. The fact is that there is no easy way, even if you tried, many people fail and failed attempts can be catastrophic leading to long term complications. I've found that shifting my expectations about life has helped me to find happiness in a dark, limited place and get me through each day. Much of the pain we suffer comes when reality doesn't match up with expectation, changing your expectation in the short term may reduce your suffering enough to keep fighting. You're being incredibly brave, you're not useless...in the context of your condition you're a bloody hero so don't let the mind put you down. Thoughts are with you, lets get through this together!
 
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I hear you @Konflict. You are suffering a lot. It is crazy hard. But we want you to keep going.

The future is hard to see from here - but it is still out there and it can be better. Book ten doctors appointments and go to them all. Nine may be no good but one will have a test that shows something or a trick up their sleeve to make things better.
 

Konflict

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Thanks @AdamS i feel like I'll be regulated to a wheelchair and bed very soon....as I've seen it happen to Douglasmitch. The worst part is no Dr beloved or treated him despite proof of osteoarthritis and clinical loss of connective tissue strength. This Estrogen receptor theory we had is very real and seems so obvious to me as we have normal levels of hormones but symptoms of low estrogen, most obviously the collagen deficiency symptoms. I know no doctor believes this theory, especially when estrogen deficiency has only been clinically diagnosed 2 times in the history of medicine....mine was induced from finasteride use and then high dose vitamin E which inhibits Estrogen receptor gen expression.....but I have some long term adverse hypersensitive side effects.

@Shoshana thank you, I'm glad at least you can have some hope for me. I feel worst for my mom.....I can't caretake for her anymore and we're all each other have. I don't want her to see me suffering, and feel bad enough she'll eventually be losing me from this disease.

@Murph I really need an MRI to prove this connective tissue deterioration, but no doctors beleive it can happen this acutely. I've had some autoimmunity tests that showed negative. the dr who gave me the geneticist referral (I think) thinks I have EDS, but no one in my family has this, it's 100% not that. And when that test comes up negative also, I doubt I'll be loooked into anymore. Hospitals are ok with letting patients die they don't care at all.
 
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I used to respond well to anything before I crashed in January.
Sorry I don't have anything more useful to contribute with.
I just keep telling myself this is the closest we have ever been to getting any answers about what ME is. And there are some fantastic people working their tails off to help us. Please don't give up now!
 

Konflict

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I don't think I have ME or CFS....I know I had some adverse reactions to some vitamins and have some similar symptoms to it, but I think I different root cause. All I know is my body is deteriorating from the inside and have zero hope or faith of a recovery.