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I feel soo depressed... IDGAF ❤ 1 child; San Diego, CA, United States 30523 posts
9th Mar '13

when I think of the fact that I will forever have to live with pain...I am already sick of it....I wish I could be pain free for just a week, I wish I could feel normal. :(



end vent.

_______Nope_________ 23772 posts
9th Mar '13
Quoting IDGAF ❤:" when I think of the fact that I will forever have to live with pain...I am already sick of it....I wish I could be pain free for just a week, I wish I could feel normal. :( end vent."



*hugs* I'm sorry. What is the pain for, if you don't mind my asking?



It's hard to deal with, I know, but there are a lot of ways you can learn to cope and appreciate things, even when in pain. It just takes time.

♥MOBAS♥ 2 kids; 1 angel baby; California 7198 posts
9th Mar '13

I'm sorry.



Generally what gets me through the pain is knowing that eventually it will get better. Why do you have to live with pain?

IDGAF ❤ 1 child; San Diego, CA, United States 30523 posts
9th Mar '13
Quoting she nan igans:" *hugs* I'm sorry. What is the pain for, if you don't mind my asking? It's hard to deal with, I know, ... [snip!] ... with, I know, but there are a lot of ways you can learn to cope and appreciate things, even when in pain. It just takes time."


I have Ehlers-Danlos Syndrome. Pretty much all of my connective tissue is fucked up & it will only get worse. It has been getting worse recently. My IBS is worse, my stomach cramps are soo bad I throw up, the medicine they give me doesn't work. I have had a headache every day for the past 6 months, and now my joints kill me constantly. :( I also have a bleeding disorder that comes along with the Ehlers-Danlos.

♥MOBAS♥ 2 kids; 1 angel baby; California 7198 posts
9th Mar '13
Quoting IDGAF ❤:" I have Ehlers-Danlos Syndrome. Pretty much all of my connective tissue is fucked up & it will only ... [snip!] ... 6 months, and now my joints kill me constantly. :( I also have a bleeding disorder that comes along with the Ehlers-Danlos."


When did you find out you had EDS?

IDGAF ❤ 1 child; San Diego, CA, United States 30523 posts
9th Mar '13
Quoting Sonia[MOBAS]:" I'm sorry. Generally what gets me through the pain is knowing that eventually it will get better. Why do you have to live with pain?"


I know it will never get better, only worse though which is why it is depressing.



http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome



I have Type 3.

IDGAF ❤ 1 child; San Diego, CA, United States 30523 posts
9th Mar '13
Quoting Sonia[MOBAS]:" When did you find out you had EDS?"


When I was a baby. My grandfather has it, my mom has it, her sisters have it, my sister has it.

_______Nope_________ 23772 posts
9th Mar '13
Quoting IDGAF ❤:" I have Ehlers-Danlos Syndrome. Pretty much all of my connective tissue is fucked up & it will only ... [snip!] ... 6 months, and now my joints kill me constantly. :( I also have a bleeding disorder that comes along with the Ehlers-Danlos."


I'm really sorry. I don't have much experience with that, but it sounds rough. I have been diagnosed with fibromyalgia, and I also have a gluten intolerance that can give me really bad digestive symptoms as well. It's really hard, especially trying to be a parent and deal with all of that.



Are there any treatments that can help? I find making sure I don't overdo it is REALLY important, as much as I want to. I need to take time for myself, and even though that's hard, it's important for the entire family.

♥MOBAS♥ 2 kids; 1 angel baby; California 7198 posts
9th Mar '13
Quoting IDGAF ❤:" When I was a baby. My grandfather has it, my mom has it, her sisters have it, my sister has it."


Oh wow. Have you been able to find anything that makes it easier to handle?

IDGAF ❤ 1 child; San Diego, CA, United States 30523 posts
9th Mar '13
Quoting she nan igans:" I'm really sorry. I don't have much experience with that, but it sounds rough. I have been diagnosed ... [snip!] ... as much as I want to. I need to take time for myself, and even though that's hard, it's important for the entire family. "


It is, ahh at least you can understand my pain. It feels like I have broken bones or something, it just hurts...my fingers hurt, my wrist hurts, my elbows hurt, my knees hurt, my ankles & toes hurt. I recently have been having such bad joint pain I will actually dream that I have broken a bone because my body is still hurting in my sleep & it is like the pain goes into my dream, it is weird as hell. What do you take for your Fibromyalgia? It sucks because I really am not supposed to take NSAIDS with my bleeding disorder but recently I have been taking Motrin with Tylenol which doesn't really help but cuts the pain some....the only down side of that is, it is making my IBS worse. Which is why I am pretty sure I had a bad episode today. I woke up with horrible cramping in my stomach, I took Nexium right away & it did nothing....the cramps got so bad I was throwing up (well I actually didn't throw much up because my stomach was empty so it was bile)...and I am just back & forth to the bathroom & after I just feel exhausted. Before I had my daughter I would just sleep after I had an episode but there is no resting with her lol...she is always on the go.



I wish I could get a break but I am a single mother so I really get no breaks ever. :\ I am seeing a Rheumatologist soon, so I HOPE she can help me more so.

IDGAF ❤ 1 child; San Diego, CA, United States 30523 posts
9th Mar '13
Quoting Sonia[MOBAS]:" Oh wow. Have you been able to find anything that makes it easier to handle?"


Not really, the medicine that use to some what help is no longer helping because everything has just progressively gotten worse.

♥MOBAS♥ 2 kids; 1 angel baby; California 7198 posts
9th Mar '13
Quoting IDGAF ❤:" Not really, the medicine that use to some what help is no longer helping because everything has just progressively gotten worse."


That really sucks, I am sorry. :(



I know what you mean about the IBS pain, I have had it before to the point of throwing up while on the toilet.

IDGAF ❤ 1 child; San Diego, CA, United States 30523 posts
9th Mar '13
Quoting Sonia[MOBAS]:" That really sucks, I am sorry. :( I know what you mean about the IBS pain, I have had it before to the point of throwing up while on the toilet."


Do you take any medicine for IBS that helps? I mean EVERY time I get an episode lately I am throwing up. :(

♥MOBAS♥ 2 kids; 1 angel baby; California 7198 posts
9th Mar '13
Quoting IDGAF ❤:" Do you take any medicine for IBS that helps? I mean EVERY time I get an episode lately I am throwing up. :("


I have never taken any meds for IBS. I was told it was from the foods I eat, not that that has stopped me.

_______Nope_________ 23772 posts
9th Mar '13
Quoting IDGAF ❤:" It is, ahh at least you can understand my pain. It feels like I have broken bones or something, it ... [snip!] ... I am a single mother so I really get no breaks ever. :\ I am seeing a Rheumatologist soon, so I HOPE she can help me more so."


I am actually on Prozac. I also take muscle relaxers (flexeril) at night when I need them for sleeping. It's helped a lot, but it isn't perfect by any means. I'll still have bad days. If I'm having a bad day I try to set up wtih the kids to have a very easy day in the house, and try not to overdo it when I'm having good days or else i'll end up having bad days later, you know?