| Register  | FAQ  | Search | Login 
It is currently Fri Feb 12, 2016 12:54 am

All times are UTC - 6 hours [ DST ]




Post new topic Reply to topic  [ 87 posts ]  Go to page Previous  1, 2, 3, 4
Author Message
 Post subject: Re: Rare diseases support
PostPosted: Thu Apr 18, 2013 10:59 pm 
Offline
Drunk Dialed Ian MacKaye
User avatar

Joined: Thu Oct 21, 2010 1:03 pm
Posts: 1868
Location: Central PA
LittleChicken wrote:
Larisa wrote:
Ehlers Danlos Syndrome. Symptoms haven't been too bad lately, but I'm kind of expecting a flare-up when the new semester starts.

Me too! Having a rough time at the moment due to related conditions (do you also have Chiari/Syringomyelia/Cervical Instability).


No. I've got mitral valve prolapse, but that seems to be the only non-joint thing.


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Mon Mar 23, 2015 11:42 am 
Offline
Vegan Vegan Vegan Vegan Vegan
User avatar

Joined: Wed Oct 20, 2010 3:10 pm
Posts: 4364
Location: St. Louis
I am resurrecting this thread because I just got diagnosed with Mixed Connective Tissue Disease (with high likelihood of developing in to lupus) and Joint Hypermobility Syndrome ~ I'm on a bunch of new meds for the first time in my entire life. Like, I literally have only taken vitamins for YEARS and now I have to take 3 pills a day that make me nauseous and dizzy? gross.
All of this is very new and kinda scary to me. How is everyone doing?

mostly I'm disappointed because my rheumy told me I couldn't do yoga anymore since my joints were all too loose.

_________________
Space has stared into the tiny syrup holes of our shame and it does not judge us. - Amandabear

I have a blog: http://upthefolks.tumblr.com/
art: http://emmelinesolomon.tumblr.com


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Sat Mar 28, 2015 8:09 pm 
Offline
Drunk Dialed Ian MacKaye
User avatar

Joined: Thu Oct 21, 2010 1:03 pm
Posts: 1868
Location: Central PA
If the meds are making you nauseous and dizzy, talk to your doctor. Also, I've got a lot of experience with joint hypermobility -- feel free to talk to me if you've got questions about that part of it.


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Sun Mar 29, 2015 8:04 pm 
Offline
Smuggling Raisins

Joined: Wed Oct 20, 2010 1:53 pm
Posts: 333
booberthefraggle wrote:
mostly I'm disappointed because my rheumy told me I couldn't do yoga anymore since my joints were all too loose.


i still do yoga. i just had to stop doing certain things. i don't do anything that feels like a stretch, anything that puts joints in certain positions, or anything that puts weight on my wrists. which does actually still leave me with enough to do because i'm more focused on breath and trying to be aware of where my body is.

i'm not saying that you should do anything against your doctor's recommendation. i just mention it because my experience has been that lots of doctors assume that the only thing in yoga is extreme stretching and arm balances and so they issue blanket prohibitions even though one of those yoga classes where you lie on cushions and meditate might be totally okay and an awesome idea.

i'm sorry things are rough with meds and such right now. you can pm me too if you ever want to talk or are looking for resources.

i hope you can get some relief from the nausea and dizziness. take care.


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Tue Mar 31, 2015 12:32 pm 
Offline
Vegan Vegan Vegan Vegan Vegan
User avatar

Joined: Wed Oct 20, 2010 3:10 pm
Posts: 4364
Location: St. Louis
so it turns out that the nausea and dizziness was just my body getting used to the meds! I'm doing good now (also: I am learning that "take with food" is not just like, a casual suggestion)

thanks for the tips! unfortunately the yoga I was doing was all hardcore stretching, balancing, and wrist-heavy stuff which is what I'm in it for. I don't really like the more chill/slow pillow stuff so I just have to find other things to do.

larisa Imma hit you up for joint questions soon.

_________________
Space has stared into the tiny syrup holes of our shame and it does not judge us. - Amandabear

I have a blog: http://upthefolks.tumblr.com/
art: http://emmelinesolomon.tumblr.com


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Sat May 23, 2015 11:06 am 
Offline
Vegan Vegan Vegan Vegan Vegan
User avatar

Joined: Wed Oct 20, 2010 3:10 pm
Posts: 4364
Location: St. Louis
heya! anyone have any tips/tricks for support groups when there aren't enough people who have your disease to HAVE support groups? I do better with in-person, and unfortunately don't get much from online support (leftover from NA and AA meetings probs)

I have MCTD but my symptoms are leaning heavily on Lupus right now so I e-mailed a lupus support group and asked if I would be allowed to attend meetings even though I technically have a different soft tissue disease.

anyone have any suggestions etc?
<3
boober

_________________
Space has stared into the tiny syrup holes of our shame and it does not judge us. - Amandabear

I have a blog: http://upthefolks.tumblr.com/
art: http://emmelinesolomon.tumblr.com


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Sun Dec 20, 2015 5:39 pm 
Offline
Invented Vegan Meringue
User avatar

Joined: Mon Jul 04, 2011 1:50 pm
Posts: 3650
Location: The Bene
I've been super super fatigued lately. I mean, work has been ridiculously stressful too, but it's more than that. I've been on vacation for a week and a half and I'm still exhausted. I find I have very little energy to do normal things and if I do normal things (like meeting a friend yesterday), it takes it out of me for days. I've always been lower energy than my peers (even after things like anemia and thyroid issues are corrected), but lately it's really getting to me. I know that one of the symptoms of PKD is fatigue, but I always thought my kidney function was not far gone enough to account for that. (The worse your kidney function, the more prone you'll be to fatigue.) I have an appointment with my nephrologist in a month and I suspect my kidney function will have dropped some.

I've recently joined a PKD group on FB and it's interesting reading about other people who are at the same stage of the disease (stage 1 and 2, which I suspect I'm somewhere in between) and a lot of them also talk about fatigue. So on the one hand, it's nice to know it's not just me. On the other hand, it's a bit discouraging knowing that it's pretty much only going to get worse from here.

(Of course, my anxiety issues are acting up a bit too, which doesn't make me less exhausted either.)

_________________
I ate the shiitake out of inappropriateness. - Hollie

Vegan Stuff in Belgium

VSiB FB page


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Fri Jan 15, 2016 12:45 am 
Offline
Vegan Vegan Vegan Vegan Vegan
User avatar

Joined: Wed Oct 20, 2010 3:10 pm
Posts: 4364
Location: St. Louis
ugh lepelaar I'm sorry. It's so frustrating when your energy is just nonexistant :( I hope the fatigue eases up a little <3

_________________
Space has stared into the tiny syrup holes of our shame and it does not judge us. - Amandabear

I have a blog: http://upthefolks.tumblr.com/
art: http://emmelinesolomon.tumblr.com


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Fri Jan 15, 2016 12:49 am 
Offline
Vegan Vegan Vegan Vegan Vegan
User avatar

Joined: Wed Oct 20, 2010 3:10 pm
Posts: 4364
Location: St. Louis
I'm a cranky bisque-y crasshole right now because the chemo i'm on isn't working. this is my third in a series of steadily-more-intense treatments and it's been 3 months with no improvement, instead I just continue to get worse. what it HAS succeeded in doing is making my hair thin, my skin dry, and my eyebrows patchy.

_________________
Space has stared into the tiny syrup holes of our shame and it does not judge us. - Amandabear

I have a blog: http://upthefolks.tumblr.com/
art: http://emmelinesolomon.tumblr.com


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Wed Jan 20, 2016 12:57 pm 
Offline
Tofu Pup

Joined: Wed Jan 20, 2016 12:51 pm
Posts: 1
Hi guys I am new to this forum. I have diagnosed with Crohn's disease few days ago. Any tips or advises ? Thanks !


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Thu Feb 11, 2016 1:00 am 
Offline
Vegan Vegan Vegan Vegan Vegan
User avatar

Joined: Wed Oct 20, 2010 3:10 pm
Posts: 4364
Location: St. Louis
welp, the mid-dose chemo treatments officially didn't work!
on to experimental treatment #1: mycophenolate (an anti-rejection drug for people with organ transplants) !!
!!!!!!
!!
!!!!
everything is great and wonderful and i am not freaked out about anything.

HAVING A RARE-ASS DISEASE IS SO MUCH FUN

_________________
Space has stared into the tiny syrup holes of our shame and it does not judge us. - Amandabear

I have a blog: http://upthefolks.tumblr.com/
art: http://emmelinesolomon.tumblr.com


Top
 Profile  
 
 Post subject: Re: Rare diseases support
PostPosted: Thu Feb 11, 2016 5:29 am 
Offline
Invented Vegan Meringue
User avatar

Joined: Thu Apr 14, 2011 6:10 pm
Posts: 3828
Location: in the middle
Aw crepe! Hugest good luck with the experimental treatment.

_________________
"I go to the people with dirty onions and scrawny broccoli." - allularpunk

https://dropscone.wordpress.com/ - frugal recipes & finds in the UK


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 87 posts ]  Go to page Previous  1, 2, 3, 4

All times are UTC - 6 hours [ DST ]


Who is online

Users browsing this forum: No registered users and 1 guest


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group
Template made by DEVPPL/ThatBigForum and fancied up by What Cheer