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Dealing with Chronic PainContains "mature" content, but not necessarily adult.[email protected] 
  
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  Dealing With Chronic Pain  
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MEMBERS BIO : About me.
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 Message 1 of 5 in Discussion 
From: raeofsunshine  (Original Message)Sent: 4/24/2007 6:10 PM
I suppose it's time to tell everyone about me, i waited a bit because i just don't want to sound like I'm whining or complaining. as it normally sounds when i tell people fact about how i feel maybe it has more to do with their perception because they aren't accustomed to what i feel, or think I'm just exaggerating. whatever the case it shouldn't hold me back from gaining some support and I'm taking the leap. =)

First off my name is Tam I'm 27. i live in Canada with my wonderful fiance and in 6 months my first child barring any unforeseen circumstances that is.

I am hyper flexible due to a lack of connective tissue, possibly elhors danlos syndrome wanted to get that checked but the test is expensive and it's not as though they will be able to do anything for it other than the things i'm doing now. like exorcise and eating well. both my mom and brother both have symptoms of this as well. but i have the worst of it. most my joints spontaneously can go out but i have learned to put most of them back myself but the constant movement is starting to cause arthritis.

I broke my jaw when i was two and had surgery when i was 15 to lengthen the bone, it hit a nerve and its mostly numb but in the joints i have arthritis in my jaw. between that and the lack of cartalige in my ears has made me lose some of my hearing. i have a hearing aid for my right ear but it doesnt hold in place well due to the lack of cartalige so i just skip it and lip read alot.

I also have interstitial cytitis it has similar symptoms to overactive bladder but can be quite painful because if i have the wrong ph in my bladder the lining actually sheds.

I also have IBS-C (now that im pregnant it has calmed a lot.)

I have poly-cystic ovarian disease as well. it caused abnormal weight gain and added stress on my already weak joints. as well as insulin resistance due to the weight. I am on metformin to address all of the symptoms from it at once, i lost 50lbs and it normalized my blood sugars and my hormones to where i was able to get pregnant after years of trying. =)

my blood pressure also is slightly elevated but what worries me is without my bp med my heart rate is about 120 resting. (and i cant take it during my pregnancy =/ ) i also retain alot of water.

Also i have been diagnosed as bipolar and i'm coming off those meds as well but the pregnancy has leveled me out a bit anyhow. the problem is those meds also are crossovers for my bladder condition and my ibs as well as any nerve pain from my hyper flexible joints.

as my guy says I'm just broken teehee. but I'm working on fixing that through diet and exorcise mostly. will be swimming alot this summer. if physio wasn't so expensive i would go there once a week to strength train my muscles so they can do the job my joints are supposed to.

anyhow thats what i have to contend with everyday it's not as intense as a lot of your guy's pain though its a lot of different pain. I really commend you all for how well you cope. I envy you all i just about lost my mind going back and forth between the doctors before i was finally diagnosed properly.

Thanks for the ear and the shoulder in advance

Tam

Take care all.








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Reply
 Message 2 of 5 in Discussion 
From: raeofsunshineSent: 4/24/2007 6:13 PM
oops its IBS - D not C

my bad

Reply
 Message 3 of 5 in Discussion 
From: MSN Nicknametomcat5162Sent: 4/25/2007 9:12 PM
 
Greeting Tam.  I'm tomcat, I'm one of the assistants around here.  And I'm also one of those that suffer chronic pain.  I'm glad you decided to post your bio and join our group.  From reading your bio, you have alot of things going on in your life.  First off, congratulations on your impending birth.  Do you know yet if it is a boy or a girl?  Or do you want to be surprised?  I was surprized when my son was born, and boy was I ever!  I was so sure he was going to be a she!  I know that you just want a healthy, happy baby, that's all. 
 
You have so many different physical things going on with you and at such a young age.  Sweetie, I so hate it for you.  You have a lot on your plate.  I wasn't familiar with Elhers Danlos Syndrome, so I looked it up.  I see that it's a connective tissue disease that makes your joints move out of place.  Am I correct?   I worked in the medical field previously and was familiar with most of the other medical conditions from which you suffer from.  Do you take pain medications?  Do you have chronic pain to need constant pain meds?  I know that the pregnancy has modified your medication routine at least temporarily.  
 
You are not whining or complaining one bit in this group EVER when you post anything.  That is exactly what this group is for.  Know that.  That is exactly what we are here for.  We are like a family.  Many of the members have been around several years and we have really gotten to know alot about each other and become friends.  We'd like to get to know you as well.  We even have some resident Canadians too!   Our regular message board is over on the "general messages" so come on over there and join us and start posting.  The bios section is a "get to know you" sort of thing and our regular messaging is the "general" board.  Not everyone checks the bios section regularly.
 
Be sure to check out the left light blue panel.  We have tons of great info there.  Anytime you need anything from one of the managers just click on our links in the blue.  I'm glad you found us and I look forward to getting to know you better.
tomcat
asst mgr 

Reply
 Message 4 of 5 in Discussion 
From: raeofsunshineSent: 4/26/2007 7:43 PM
ya if this was one hundred years earlier id be making a living being a contortionist or on a side show stretching my skin out. so i am pretty sure that it is ehlors even without the test. i think that the bladder condition may have something to do with it as well. as for meds for pain, i sorta lucked out and meds i was taking for mood also worked for the nerve pain. Effexor xr (also helps with my ibs and bipolar also had the added benefit of curbing my apatite) nurontin for mood helped a lot with bladder pain and a lot of my general pain from the joint movement. I'm currently on prevacid to balance the ph in my stomach so i don't get heartburn or inflame my bladder. im comming off effexor and off the nurontin.

as i said in the med section im on monocor for blood pressure elevated heart rate (well trying to go off but im getting jumpy due to my heart rate so i snuck 1/4 my regular dose today and feel alot better i just dont want to harm the baby so i try to cope without it) and novohydrazide for water retention (aprox 120 resting without 60- 90 with the meds)

im also on metformin for insulin resistance, and the poly cystic ovarian disease (will be tapering off now that im in my second trimester and the chance of miscarriage is alot lower)

i also have b12 deficiency so i also take a shot once a week for 3 or 6 months then to every three weeks. along with other supplements. vitamin n minerals.

Reply
 Message 5 of 5 in Discussion 
From: MSN NicknameBetween_Lines_And_VersesSent: 4/23/2008 11:27 PM
Hi Rae:
 
You sure have taken on a lot of pain in your life and I see you have IBS on top of everything! I am glad it is under control.
 
I hope that you can stabilize your pain part of your life so you can be happier esp. during your pregnancy.
 
Raymond.

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