• Our developer will be working on RCF over the next few weeks. Things may look wonky at times, normal functions may not work or dissappear completely. It's the nature of the beast but we'll try to make sure this is painless as possible.

The mental health thread

Sir'Dom Pointer

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A big part of what it takes is support from other people. Do you have that or can you get it?
My family help, but that's it. I'm alone.

If I can get that? Maybe in the future? Now my circle is really limited.
 

Hydroponic3385

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Any interest in a support group or support network for people with similar disorders? I don't have any experience in therapy with people who've had Ehlers-Danlos (although the newest winner of Rupaul's Drag Race has it - sorry I had to gay it up), but I've worked with many individuals with chronic illnesses over the years. A number of them found groups very helpful for many reasons. You could ask the hospital or any medical professionals you've worked with if they know of any, or if you let me know your location I can dig around and see what I find in your area.
 

Sir'Dom Pointer

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Any interest in a support group or support network for people with similar disorders? I don't have any experience in therapy with people who've had Ehlers-Danlos (although the newest winner of Rupaul's Drag Race has it - sorry I had to gay it up), but I've worked with many individuals with chronic illnesses over the years. A number of them found groups very helpful for many reasons. You could ask the hospital or any medical professionals you've worked with if they know of any, or if you let me know your location I can dig around and see what I find in your area.
Any interest in a support group or support network for people with similar disorders? I don't have any experience in therapy with people who've had Ehlers-Danlos (although the newest winner of Rupaul's Drag Race has it - sorry I had to gay it up), but I've worked with many individuals with chronic illnesses over the years. A number of them found groups very helpful for many reasons. You could ask the hospital or any medical professionals you've worked with if they know of any, or if you let me know your location I can dig around and see what I find in your area.
I'm looking for something.

I'm looking at disability too and occupational help. Thing is, I hired a lawyer and he told me that my illness/syndrome is so rare and misunderstood that they are going to make my life very hard trying to get benefits. I'm very weak, so he told me that it's not the right time because the diagnosis is too new. Thing is, he told me to focus on getting tax credit as it would be worth more.

Honestly, I think he is looking for a bigger payday for himself. I dunno. I need money now, although my parents help me now.

I'll be asking for support groups. That will certainly help.

Please next time tag me or something :(

And god damn, I have been to a physio and they fucking fucked my body today and charged me 120$! fucking crooks.
 

jking948

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Any interest in a support group or support network for people with similar disorders? I don't have any experience in therapy with people who've had Ehlers-Danlos (although the newest winner of Rupaul's Drag Race has it - sorry I had to gay it up), but I've worked with many individuals with chronic illnesses over the years. A number of them found groups very helpful for many reasons. You could ask the hospital or any medical professionals you've worked with if they know of any, or if you let me know your location I can dig around and see what I find in your area.
I've got a connective tissue disorder - Loeys-Dietz. Messaged Sir'dom, but I'd be down.

Also have charcot-marie-tooth. Disorders that impair you physically are not easy. It's been my entire life. I'd love to have more people to talk with.
 

sportscoach

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So a little update;

I have been diagnosed with a rare connective tissue disorder called "Ehlers Danlos Syndrome".

It affects your connective tissue as in tendons, ligaments, your skin, your internal organs. It is progressive some what(because your tendons/ligaments will continue to detonate and stretch over time) and it basically causes your tendons,ligaments to be too stretchy and not do their job of stabilising your joints, and so they tear and instead your muscles have to do all the work. It is in the hyper mobility spectrum disorder, but i'm no longer hyper mobile...i'm stiff as a rock. My fingers are bendy, my knee subluxates, my hip too and basically every joint...but I'm stiff because the muscles have to stabilise everything.

It is so confusing because it involved so many bodily functions. Not only that, but there is a big neurological component in it. Why? for a few reasons:

  • My vertebras are hyper mobile so it causes nerve compression through dynamic movement and bad posture.
  • Because of the lack of stability I have ridiculous amount of trigger points that compress on adjacent structures.
  • I don't fucking know.
Also there is never-ending tendonitis. Injuries apparently don't fucking heal.

It involves sleep...apparently I have sleep apnea because my airway spasms during the night.

It involved your stomach, so I don't absorb nutrients too well.

And you lose tons of muscle and strength through disuse because of repetitive injuries. And when you try to strengthen your body it feels impossible.

I bought nordic poles to help me walk better because my legs can not hold my weight anymore. I have to get stronger. My injuries affect both sides all the time. My new and 'annoying one is the achilles. It fucks up with my walking.

There is constant dizziness, vertigo, headache that surrounds me and friggin jaw dysfunction and constant facial muscle/nerve pain. There is a lot more, but it does not matter.

Anyways, I was hospitalised for a month in rehab and I decided to ask to be released. They didn't know how to deal with my problems and felt like they made my lower body worse. I kinda regret this decision because I have no idea what to do next as i'm alone and need to find healthcare professionals to help me.

I need 3-4 times a week physio and hydro. It is costly and I'm not mobile right now.

I'm looking for an alternative...tryign to find a different hospital to be hospitalised in perhaps, or maybe a day rehab where you come in the morning and go in the afternoon. The issue is that it is very hard for me to do.

Argh, I feel overwhelmed and I have no strength to handle it. Although the hospital may not be the best option for someone who can take care of himself?
I will give you a quick thing of advice, message me if you need more clarification. I have some ideas on how to help you. I have something similar, just not as severe as you, plus I got lucky I test abnormally high strength wise.

First thing is first, you have to understand you are back at lvl 1, you will have to retrain/strengthen your everyday muscles. So as funny as it sounds, Wax on-wax off! You will have to just essentially work on doing stretching/senior citizen style of yoga. Do light exercises a few times a day. Weights are not a bad thing, but you need to plan on doing very light and increase reps, rather than trying to put on heavier weights. Look up physical therapy stuff for every joint and try to incorporate all the major joints everyday. For me I am supposed to be doing the knees, shoulders, hips etc everyday. This is also something, plan on doing 3-4 hours a day just doing light exercises.

Also find a local pool. For now just get in the shallow end and walk around. Try to get in very often to be honest. Start out like 5 minutes/getting the heart rate up, but not making you super tired. Do that for a week, then add a minute or something like that the next week. Work on different motions as well, like walking backwards, high knees etc. If the pool has the old people water aerobics, then join it, even if its only have the time, or you don't go fast then thats fine. You can never improve if you do not get moving. Don't push yourself to hard right now, just keep moving and gradually add more time/more reps. Also if you know how to swim, do some laps every day. Don't push, but getting into deep water can help decompress the spine, also there is deep water exercises that I could possibly teach you on how to do that can help and strengthen your lower body.

Also for your condition, I was told a geneticist may be someone to talk to since it is normally linked that way and they are usually more informed about that type of condition. I would research who in your area understands the disease. I would go online and see if there is some type of forums somewhere for it. There is a lot of information via the interwebs and I am sure if you research enough you will be able to find some type of support group.

Also another factor, you will have to watch your diet constantly. I am not sure whats near you, but get your resting calorie rate since that is kind of the minimum calories you have to take it. Also I would say, your diet will have to completely change. You will likely need to cut out gluten, Dairy and nightshade (Tomatoes) at least for a while, to make sure you don't have issues with any of those. I am not sure of your diet now, but also I would recommend, cutting out any added sugars or sweeteners. I am not saying cut out carbs, but I am saying do not have any added sugars. I would also recommend going organic when and where you can (if you are outside the US won't be an issue). It does make a difference at the end of the day. Also if you were a heavy junk eater/ate a lot of sugary foods, you will need to repair your gut, which will help you absorb nutrients better. Also you will have to get powered vitamins, proteins etc, that don't have any sugars/sweeteners added. You will have to make vitamin infused drinks/smoothies to help you get nutrients in you. You also may have to detox your system for a weekish/two weeks, to clear your system. Powered vitamins are easier to absorb, but don't do all at once. You would do better taking the vitamin amount split between 3-4 drinks a day since that will help your body absorb more overall.

Truth be told, it will be a long journey to make your life better and it sounds like it is up to you, but you aren't as alone as you may believe. In this era of knowledge at the finger tips and places that specialize in certain things, you have the resources that you need to get through this. Also you have this sports community. Some people on here may come off as a holes, but most people on here, are good people. Talk, ask questions and someone on here should have an answer, if not can point you to the right direction. Though with your condition, just a forewarning, you just have to start somewhere and just keep going with it. Stopping means regressing so if you want to live a good life, you have to keep going. As you get stronger I would recommend enjoying the world. Having something to go towards will always help you get stronger!
 

DirtyDan

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I don't want to be that guy who self-diagnoses, but here is what I got going on:

My Mom was diagnosed with schizoaffective disorder.

I have been diagnosed with GAD and panic disorder. No longer have the attacks, but get the anxiety on a daily basis and it ranges in intensity from barely noticable to messing with my actions and thought process.

I have noticed that I'll go through stretches with racing thoughts and high energy, then basically crash and lose my motivation to do anything. Most of the time it's a mix between those two and it's getting harder and harder to keep these intense feelings at bay. I feel unstable.

For the longest time, I thought these feelings were as intense for me as anybody else, but I'm starting to think that's not true. Normal people don't have a stretch of being depressed from late elementary school to sophomore year in HS. During that time I missed a ridiculous amount of school, had no friends, and had regular panic attacks. Then I came out of it just like that, developed really strong social skills, coping mechanisms, and found a good group of friends. Then I go from that to becoming a vegetable my first semester or two in community college. Go back to normal, productive self, then it starts all over again at CSU last spring.

I wake up on any given day and I'm just not sure which Dan I'm going to get. It's stupid and I want to be able to live my life
 

David.

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I don't want to be that guy who self-diagnoses, but here is what I got going on:

My Mom was diagnosed with schizoaffective disorder.

I have been diagnosed with GAD and panic disorder. No longer have the attacks, but get the anxiety on a daily basis and it ranges in intensity from barely noticable to messing with my actions and thought process.

I have noticed that I'll go through stretches with racing thoughts and high energy, then basically crash and lose my motivation to do anything. Most of the time it's a mix between those two and it's getting harder and harder to keep these intense feelings at bay. I feel unstable.

For the longest time, I thought these feelings were as intense for me as anybody else, but I'm starting to think that's not true. Normal people don't have a stretch of being depressed from late elementary school to sophomore year in HS. During that time I missed a ridiculous amount of school, had no friends, and had regular panic attacks. Then I came out of it just like that, developed really strong social skills, coping mechanisms, and found a good group of friends. Then I go from that to becoming a vegetable my first semester or two in community college. Go back to normal, productive self, then it starts all over again at CSU last spring.

I wake up on any given day and I'm just not sure which Dan I'm going to get. It's stupid and I want to be able to live my life
Find some Lamictal and do the basic stuff like diet exercise sleep relationship work

Meditation and mindfulness only do so much for bipolar
 

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