Returning User Devolution Update

[Devolution2]

Hi all,

It’s been a while since I’ve been on the forum, I hope everyone is as well as can be or at least better than me.
My previous name was Devolution but I lost access to my Gmail account a while back. I’ve no recovery options so I created Devolution2 to keep things simple.

I just wanted to give an update on were I’m at I suppose, it’s been a rough past few years and apologize in advance for this negative return post.

I just don’t know who else to talk to anymore and I suppose this is kind of an archive for myself too.
I highly advise you to not read this if you’re in a bad place yourself.

For anyone who has never seen my original member story

An Accutane Story [Isotretinoin] (Long post)

NEW MEMBERS, PLEASE FILL IN THE FOLLOWING TEMPLATE. This is so that we can more easily track symptoms and hopefully find patterns in our syndrome. This will also help others understand your background and situation. Where are you from (Ireland)? How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) General symthom searching What is your current age, height, weight? 20 years old, 5 foot 6", 168 pounds or 12 sto…

I’d like to clarify what symptoms I’ve been struggling with the most.

[Skin Elasticity, Healing Issues]
After being on accutane my skin became very elastic/lax in places, I can pull it away from my body quite far in spots such as my biceps and neck.
I have many stretch marks some like cigarette paper in thinness. My skin burns at times and it doesn’t feel nice to touch. No doctors have any idea why this is happening and I’ve been referred to a rheumatologist to see if it’s Ehlers Danlo’s Syndrome, I don’t believe it is but I’ll go just to rule things out and maybe it’ll lead to something else.

[Lumpy Fat]
The fat lumps under my skin have progressed a lot over the years, my thighs are quite large now outer and inner, I can grab a handful of fat on my outer thighs, the fat doesn’t look or feel right.
The composition of fat stored shouldn’t deposit the way it does, I’ve searched everywhere and the closest thing I could find online was a disease called Lipedema, but as far as I can tell it’s only prevelent in women.
The fat is lumpy and painful and is now visually the easiest thing to see, it’s body wide but most noticable under my biceps, chest, legs, hips and even tissue in my mouth, it’s like my fat cells have expanded, it feels like polystyrene, it’s not something I’ve seen mentioned on the forum and it’s definitely the one symptom I have that has progressively gotten worse.

[Visual snow syndrome]
The past 3 or 4 years I’ve been like a vampire, I tend to stay indoors as much as I can, preferably in the dark as I feel much worse in sunlight, everything feels drier and the light hurts my eyes. It’s like I’m looking at the world through a lens, everything is covered in static, is blurry and have persistent floaters and light sensitivity with ringing in my ears/headaches.
I visited a neurologist, got a few tests and my eyes were fine, so they officially gave me the visual snow syndrome diagnosis and said they don’t understand it as of now so there’s nothing they can really do.

The past couple of years I’ve been working in a warehouse hoping things would improve.
I thought if I kept working I’d be able to adjust to things.
I even got a promotion to move up to the office but unfortunately after two weeks I had to tell them I can’t do it anymore and asked to move back to the warehouse.
I feel like a failure in that respect but the brain fog and anxiety makes it near impossible to do daily tasks, all of this stuff is always on my mind.
It got so bad I went back on brintilex, which has worsened my visual snow and I have really bad headaches from it.
I took it for a year or so previously as it felt like I was between a rock and a hard place, either feel extremely bad and depressed, or feel extremely bad and a little more numb to emotions.

I’ve felt pretty low at times I will say, i’d definitely say I’ve become a very negative person, I don’t really see myself getting better anymore as there’s too much physical body chnages and damage done.
I don’t know who to turn to or how to escape.
I’d love to be positive but I just can’t think of anything enjoyable or any future were this ends up a good one for me.
Despite that it’s still hope that keeps me going, the thought that one day things might be ok, even if just some stuff was a little better.

With the brain fog and anxiety, I feel trapped in work and life as nobody understands what I see and feel, I had to explain the visual snow stuff to the boss, that’s how I managed to get out of the office.
I live at home so I’d still have a place to stay if I lost my job but I don’t want to do nothing.
I feel like it’s extremely hard to carry out a job but the way life is you can’t really not work, eveyone just says get on with it.
I’ve never really missed a day and have still went in even if I’ve felt horrible, but as time goes on I feel more and more drained and have less energy to carry on.

Thanks to anyone who read this, I’m very sorry again for such a downer of a post but this is my reality, I didn’t want to sugar coat it. I’m just lost on what to do and am wondering if anyone’s in a similar boat. If so how do you continue go on?

[baitongWu]

I’m in the same situation as you. I got a high paid position before PFS. Although PFS fucked me hard and gave me a huge brain fog and anxiety, I’m still not willing to give it up. My work needs to pay my cognition, emotion and energy. I feel more and more exhausted.but I don’t want to waste my
life because of a few damn pills.

[M_C]

Thank you for coming back and providing a detailed update, even though it’s a huge downer. If nothing else, your report helps everyone understand how serious and long lasting these symptoms can be.

The hope that this is not forever is the most precious thing. Keep holding on to it!

[Devolution2]

Hi BaitongWu, thanks for the reply.
That’s exactly how I feel, I don’t want to waste my life either but the days just seem to blend together. It almost feels like I can’t access part of my brain, like it’s in power saving mode.

I just go to work and go home, I don’t really do anything else or have the desire to do anything. Learning new things is extremely difficult essentially.

[Devolution2]

Hi M_C,
I think it’s good to come back, sometimes you hear horror stories and then complete silence from people, you don’t know if they’re alive, better or feeling the same.

I remember reading old posts about similar issues to mine and then there’d be no trace of that person. Even if the news is bad it’s still nice to know how people are doing.
It keeps a record of everything and as you said and shows the severity of this disease over the long term.

The most frightening and isolating thing about it is medical professionals, so called specialists have no idea what to do or where to look, at least in my experience.

Many health conditions are almost laughed at initially if they can’t prove it in their medical book. The likes of fibromyalgia, lipedema, chronic fatigue, and visual snow etc. They’re all just psychosomatic until one day, they’re finally taken seriously.

[mstone]

@Devolution2

Many health conditions are almost laughed at initially if they can’t prove it in their medical book. The likes of fibromyalgia, lipedema, chronic fatigue, and visual snow etc. They’re all just psychosomatic until one day, they’re finally taken seriously.

…long covid, chronic lyme. Unfortunately they’re not fatal and all boil down to not feeling well. And not feeling well will never be taken seriously, not even when it drives us to suicide.

My endo recently referred my case back to my GP for depression and anxiety. Until the day comes where we can catch these conditions literally happening on video we’re on our own.

[Devolution]

Hi All,

I finally found my old password for my main account, I lost access to my old google account so I’ve linked a new one now

I just wanted to give a 2023 update about myself, this time I want to be forward and say it’s a lot more positive than my last post.

I’m not sure how helpful this will be and I want to state I’m nowhere near cured but I’d like to record what I’ve done to make myself feel a little better overall.

I want to state all my symptoms are still here, the stretchy skin, penile numbness, swolen lumpy fat/scar tissue body wide (more on that later) & the visual snow syndrome too.

The past 2 months or so I’ve been using a rowing machine that I bought from lidl of all places, it’s a basic machine nothing special.

I’ve always found with excersise my heart rate goes extremely high very fast.
My vision used to almost black out, so I said screw it I’ll just aim for 5-10 mins a day of excersise, that’s it nothing more and I’ll see how I get on.

For the first couple of weeks I had little to no energy to even use the machine but kept at it, I watched a few videos on how to use it so I wouldn’t mess up my back and although I’m not perfect now, I’m much better than I was.

I now aim for about 20-25 mins on it a day, I use a smart watch to monitor my heart rate so once it goes into the red zone of 190bpm or so I stop, take a break and once I feel ok I go back at it again for another 5 minutes or so.
I repeat until I hit my 20-25 min mark.

I learned to adjust excersise to what suits my body, this was the thing that really got me able to do something.
It gives me something to achieve each day and I feel good when I finish it, I do a light walk-moderate power walk on an incline treadmill after using the rower too, it’s just a basic machine I got on a second hand website and do that for about 10-20 minutes depending on how I feel.

If I feel sore or have very little energy I’ll take a day off and go back once i’m ready again.

My diet also went from having a few takeouts to eating whatever the parents cooked to moving towards ready meals initially, I don’t really cook so simple ready meals following the traffic light food system worked for me to get a little healthier.

I’ve now subscribed to a food app called hello fresh, this is not a sponsor I’ve no idea if they’re good as my first order isn’t till a few days from now but they essentially deliver only the ingredients you need, pre proportioned so I only really have to cook the raw ingredients and the rest is already done, the shopping, the decision on what to cook etc.

Another thing I like to make is a basic stir fry, they’ve been very helpful, I go to Aldi and get those pre cut vegetable mixes, throw in some protein and add noodles or rice to the pan with a low ish calorie sachet of sauce you can pre buy and it’s ready in a few minutes.

Previously my anxiety and brain fog had made basic tasks that many people do without thinking extremely difficult, it was about 5 years or so of this but I’ve decided to just simplify things to my needs.

I’ve also been drinking Huel for lunch in work, it’s a complete meal but any alternative brand I’d say will do the same job, it’s 400 calories a drink and I know exactly what I’m eating and once again, no prep, no anxiety and it’s healthy.

Overall, eating only when my body needs it and excersising has made me fit into old clothes that are medium in size, I was a large to almost XL and it’s really made me feel a lot better about myself.

Initially when everything hit the fan with accutane, I gave up.
For about 5 years I thought there’s nothing I can do now, my bodys ruined and I couldn’t have been more wrong.

I understand I can’t do much about numbness or all the fat I have, but I’ve reduced my size a lot and feel much better in myself, I still have tons of lumpy fat and it does still feel like glass under my skin and swells on bad days, I still get depressed and have low days.

But overall I’ve changed how I view myself and am trying as hard as I can to be the best version of myself, so if we do get a cure or AI medicine takes off in a massive way and we can fix the core issues, I’ll be in a much better place already.

This was me just throwing a lot of random things I’ve done together, I know this won’t be helpful to all but anyone who’s just given up and thinks they can’t change anything? Take it from someone who’s been to rock bottom, you can definitely do something even if it’s extremely small to help a little.

Excersise isn’t a cure and it isn’t for eveyone, but even yoga or light walking would be helpful.
Try use apps like meetup(dot)org to make friends who will also walk with you.
There’s tons of free apps for no equipment excersise at home that are also great to teach anyone how to get in better shape, I’m a noob so I just used the Home Workout app for some stuff to strengthen my core.

All the above and making some new friends has made living with all the other crap a lot more manageable, I wish I wasn’t in this situation but I have to do the best I can with what I’ve got.

[Dubya_B]

Thanks for checking in! Like you say, it’s good to hear a status update every so often, even if it’s simply to share that you are doing the same as a year ago.

It’s the typical response I hear when speaking to those with a post-drug syndrome who don’t participate in the forums or related social media any longer. A person could easily get the impression that it’s more common for us to either get much better, or much worse, in the long run because improvements and crashes often motivate members to share their current situation.

Sounds like you are managing/coping much better.

[Exsexgod]

Congratulations I think about bying a stepper and to try to loose my gained fat too. Hope to feel better than like you.

[ruinedyoungman]

i feel you, ive been in this boat… i have the same skin problem and my fat look like a armor inside my skin

[Devolution]

Hi Dubya,

I 100% agree positive or negative, it’s good to leave a thread you can follow over the years for symptom documentation.

I’ve been trying to do the best I can with the situation since I’m in it for the long haul.
Some days as we all are aware it’s hard to motivate ourselves to keep going as everything can just feel terrible mentally and physically, but the days we have a little more energy are the days we have to try capitalize on and try put our best for forward.

Eventually when there’s a treatment I’m hopeful if we can maintain our sanity in this limbo period, we’ll be much better for it when our bodies are in a better place.

[Devolution]

Go for it, I started doing excersise at home due to the bad anxiety I also suffer from.
The days I have no energy there’s nobody watching me, I can sit on the rower, take my time and just do what I can and still feel like I’ve achieved something.

If you really don’t want to do it, say to yourself just 10 minutes, that’s it, 10 minutes and after completing that, you’ll still feel like you’ve accomplished something.

The main thing is don’t compare yourself to anyone else, each of us are different so be mindful of your experience.

[Devolution]

It can be very tough mentally, not understanding what’s happening to your body. The first few years I went to a very dark place in my mind, everything happening was too much to process and it felt like I was viewing this world through a fake body.

My issues persist but I’ve met some great friends and have been a lot more social the past year.
The best advice I could give would be to stay connected and don’t isolate yourself, that was the worst mistake I made and was very difficult to get out of.