New (Oct '21) pfs member please help

@Headpressure how are you doing my friend your situation is just horrific has anything at all ebbed. Anything?? I can relate to almost if not all of your symptoms the difference being your decline has been extremely rapid and so severe… Are you taking any medication to try to stem the symptoms as anything and almost everything could be blowing u apart

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Thank you for reaching out, I have multiple dents and indentations on the left side of my skull and face. I’m at my wits end, everyday is pure hell with no sign of relief.

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I’m really struggling with life.

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Everyday my condition mentally and physically worsens, I’m losing my will to fight. God I was so optimistic at the beginning, this keeps tearing at me, I lose a part of myself every day.

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I relate my skull is full of holes under the skin, additionally old wounds that had refilled across my body have become evident again the collagen has dropped away. I’ve also woken to new crevices in my face wtf

The last few months has seen a further decline In my skeletal system and connective tissues i came out of the gym in tears I can’t do anything even light weights are impossible. Another part of my life that’s gone. I can’t lift a kettle or wash my car the pain is horrendous my strength has dropped away even further. The hospital gaslighted me again at an urgent appointment when I was seeking an auto immune drug. I have inflammation on the bone heads which seems to erupt after eating. It’s becoming beyond belief.

I have some good news though.

Firstly u need to stop taking benzos and anything else. 3.5 years ago the doctors were giving me stuff like this I was desperate to hang on to my career etc but they blew me apart I stopped them after almost immediately developing new permanent sides my decline was accelerating. Some of us are so damaged that anything like this has dire consequences.

Now the good news and the hope.

I’ve been on omad for 40 days now, the last roll of the dice. Its been difficult but ive started to see some minor improvements recently. These take a while to show, the healing is gradual. I’ve had a fungal big toe nail and it’s gradually rotted away over the last 6 years, it’s no longer painful and is starting to re attach to the bed. My gums aren’t as unflammed, my vision isn’t as blurry as often, my teeth don’t feel as hollow, folliculitis has disappeared, I had a mole removed and it healed quickly, an old wound that’s been there for months disappeared within a few days the tinnitus has lowered, it had only been getting louder these last few years. I’ve had a few nice dreams instead of constant nightmares, woke to wood for a few seconds I was alone yesterday and I wasn’t terrified and worried or crushed, I had a touch of clarity. These are all signs that something positive is happening mechanisms are starting to show a degree of normal function .

I’ve tried water fasts in the past but this one is different. U basically eat for up to 90 minutes in one sitting and your body gets a rest for the other 22.5 hours.

I havent lost any more weight which shows how fucked the digestive system is/ absorption issues.

Collagen loss is linked to this. Some of us are suffering from lipodystrophy which has multiple facets. Omad can reset this after time…

A pfs sufferers from the early days who was housebound for 3 years put me onto this. I was ready to wrap it in a few times but have perservered in the absence of anything else.

Fasting is in the bible and I truly believe this is the answer to a better life.

I expect the big hitters will take more time to abate like the bone pain, loss of muscle, collagen loss as they’re global and not site specific.

Give it a go mate you have nothing to lose and everything to gain. This brings hope and is risk free.

NB I thought I had the devil inside me as things were that bad/horrific but I now see it as a complex disease that can be treated

Feel free to PM me anytime.

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I’ve also developed fungal toenails on 4 toes since PFS, but had missed the connection. Something new to add to my list of symptoms. Jim

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I am suffering so much guys it’s insane. I don’t know how much longer I can take this pain. I can’t do anything and my entire body is disintegrating.

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I can’t do this

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I’m absolutely freaking out, this is pure torture, I keep getting worse and worse everyday and nothing absolutely nothing fucking nothing helps. My pain is unimaginable l. Every second is agony…

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I know how bad this is mate it’s fucking horrible I’m down the pan too, no toilet for 4 weeks, connective tissue dropping to bits, bone pain everywhere unable to get dressed, everything I eat is like poison. People around me still think I’m a delusional knob head. Come into my world for a day u ignorant excuses!!! I’m only sharing this so you know I’m in the same boat.

Moving from extreme suffering to suicide takes some kind of special strength. I know I haven’t got it, I don’t know if the survival instinct is too strong or what.

I’ve literally been at the point of breaking a few times these past few years and thought there’s no way I can take anymore but I’ve hung on for what, more suffering!!! No fuck that, in the hope ill get my life back one day

No matter how deep we’re in there remains hope.

Against all expectations I’m going to start an immune drug on Thursday, what that brings, who knows but it’s a chance . If I wasn’t here I’d have missed the opportunity. If it works it will bring hope to you too.

The last few years have flew by despite every single day being extremely painful. In another 2 we may have some answers.

Hit the diet changes and omad give them a go.

Look into SIBO

These may help.

There’s always another door to push. I’m of the opinion that time is our best friend but when things are progressive standing still feels wrong Their are some protocols that are relatively safe.

Today was a horror for me, extreme pain, suicidal, anhedonia the works. I feel like a dead 90 year old sad fuck. But fuck pfs I’ve got through it. Another victory for me.

PM me anytime hang in there no more deaths via our own hand.

Think of your life without pfs would you throw the deck in. Not in a million!!!

Fuck Merck they’ve taken enough lives.

One final thing youre still relatively early in to this and may yet experience a recovery. Ive seen many mostly prior to two years.

Sorry for being repetative but its hard to find words.

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Fucking heartbreaking.

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Never forget: Your life will become much worse if you survive a suicide attempt, so do not do anything rash. Even if the attempt works, you’ll be thinking about how you can’t breathe and who will find you, not relief from side effects, so do not act hastily. We can talk by phone if you want. I’m here, bro.

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Ty guys for your messages :heart: I’m back in the hospital

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Keep recrashing from everything I touch. Food, supplements, light exercise it doesn’t matter. I need to escape from this derealizatio. I feel like a human lab rat in a black mirror episode. This is fucking hell. I can’t get oyt. God I need out I need relief​:pray:t3::sob::sob:

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Did the hospital staff have anything to say about all this?

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Nope, the woman in the er told me “meditate” “I meditate for 4 hours a day it fixes all my problems” .I’m getting more bloodwork and have a 4 hr nuerophthalmologist appt tom.

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Did the hospital staff drug you with anything?

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Nope

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“Meditate…”

Oh, that’s cynical. A livestyle procedure for someone who fears for his health and existence. In your state you need someone with an open ear and calmfull treatment to a young man in a traumatic state from that you experienced the last time.

When I stayed in the psychiatric ward this February I just need someone to talk about my suffering with this fundamental life-changing and horrific situation.

I know Meditation from Oshos place and Krishna temple. It may help you after the crisis, if you have the strength. But in a ward, in this state, for me it’s only cynical.

I wish you very much time with a therapist you can talk to who really helps you to cope the situation. Yes I saw the deep depressed ones sitting in the dining room the ward kitchen talking and laughing making plans for a new job or a new project and we sit there near by just fighting to stand up and to survive the next days. I know and I hope you find a friend who understands your problem.

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If you’re crashing from everything try fasting for a while, I know it doesn’t seem like it helps but stick it out for a bit longer, it may help with the current chaos.I’ll pray for you tonight my friend I hope the hospital at least acknowledge your symptoms

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