EDS - Page 2

gloriajean · ‎03-10-2010

Noel - wow! You have it? Do you have severe back pains too? Seems like it's all in her back. She has hyper moblity disorder, which I guess led to this.

When the pain is really bad, she takes Vicodin. How do you manage with pain? and your daughter? It's good to know about others with this. It hurts her to sit in a regular chair so she avoids them. At a restaurant, needs a booth. She doesn't take the Vicodin when she teaches but waits when she gets home. She may lose her career over this needing disability. She is a professer at our State College here.

SXMGirl · ‎07-07-2010

@gloriajean, very sorry to hear of your daughter's diagnosis. I have never heard of it, but I am hoping for the best for her.

The next time that I hear salt and ice together, it better be in a margarita!

Noel7 · ‎03-09-2010

wrote:
Noel - wow! You have it? Do you have severe back pains too? Seems like it's all in her back. She has hyper moblity disorder, which I guess led to this.
When the pain is really bad, she takes Vicodin. How do you manage with pain? and your daughter? It's good to know about others with this. It hurts her to sit in a regular chair so she avoids them. At a restaurant, needs a booth. She doesn't take the Vicodin when she teaches but waits when she gets home. She may lose her career over this needing disability. She is a professer at our State College here.

Yes, @gloriajean I have it and so does my daughter. It sounds as if your girl and mine have the same hypermobile diagnosis.

The first thing that comes to mind is to reassure you, there are some things your daughter can do. For sure, sitting hurts, I get pain at the base of my spine. I think the way is works is that the spine tries to accommodate for the collagen problem and the older we get, it can shift a bit. I also have pain at the top of my spine for the same reason.

I don't know what state you or your daughter live in, but in CA your daughter would be able to ask for a special chair for herself, and under the Americans With Disabilities Act, the college would have to pay for it.

FULL DISCLOSURE: I am always so overwhelmed with Lupus, I know much more about that than EDS. When I was diagnosed with EDS, I thought to myself, "Great, one more thing to deal with." I have done research and reading, so I do know the basics There is a lot of information online about EDS.

For me, the pain and slipping out of joint is the hardest part of EDS. I only take Tylenol, sometimes I stagger it with ibuprofen.

I don't think your daughter can lose her job over this, I do hope she gets a special chair that really can help. If necessary, it can be made to order for her.

If there is anything else I can help you with, I will certainly try

ps I always also choose a booth.

Trinity11 · ‎11-16-2014

@Noel7...I am speechless. Like you don't have enough to deal with. Nothing, though, is worse than seeing our children suffer. I am so sorry that your daughter is dealing with this also.

@gloriajean, my prayers for healing. I am so sorry. I remember your posts about how difficult it has been for your daughter dealing with chronic pain. Prayers for your entire family.

gloriajean · ‎03-10-2010

Noel, thanks for your post. Really helpful. Sorry you also have Lupus.

She also has had IBS for many years, I wonder if that's related to EDS too.

We live in MN - I wonder about that chair here. She is told she shouldn't lift the twins, they are 24 1/2 pounds now and 34 inches in height. But when no one is there she has to and they love their Mommy to hold them. She got a lot more painful with the pregnancy with the twins. My other daughter is a massage therapist and one of her clients has EDS and she does have bones that slip out of joint. My daughter doesn't. Just severe back pain! She is on part time this semester and can teach two classes on line, and that helps, but the Dean hopes in the Fall she can go full time. How old is your daughter, mine is 45.

Noel7 · ‎03-09-2010

wrote:
@Noel7...I am speechless. Like you don't have enough to deal with. Nothing, though, is worse than seeing our children suffer. I am so sorry that your daughter is dealing with this also.

@gloriajean, my prayers for healing. I am so sorry. I remember your posts about how difficult it has been for your daughter dealing with chronic pain. Prayers for your entire family.

Hi @Trinity11 My dear friend.

I've never mentioned it here before. Like, "Really, girl, what DON'T you have?" But I wanted to help Gloria Jean, I know what it's like to worry about a daughter, so here I am

Get this: You know the old thing about being "Double jointed"? THAT is EDS. When I took dance class as a kid, I could arch my back like no one else. Not that it looks freaky, just able to do some things others couldn't.

I popped my knee out dancing at age 18 and it never went back into place so you can bet I am dang sure not to do wild dances or ski any more.

DD fell several times as a wild child, and she was finally diagnosed as hypermoble. We DO NOT have the stretchy skin some people have, but we do tear our skin easily. She has a team of geneticists following her and taking care of her. I was diagnosed by my RA on a Lupus visit and he watches over me. EDS is fairly rare.

Noel7 · ‎03-09-2010

wrote:
Noel, thanks for your post. Really helpful. Sorry you also have Lupus.
She also has had IBS for many years, I wonder if that's related to EDS too.
We live in MN - I wonder about that chair here. She is told she shouldn't lift the twins, they are 24 1/2 pounds now and 34 inches in height. But when no one is there she has to and they love their Mommy to hold them. She got a lot more painful with the pregnancy with the twins. My other daughter is a massage therapist and one of her clients has EDS and she does have bones that slip out of joint. My daughter doesn't. Just severe back pain! She is on part time this semester and can teach two classes on line, and that helps, but the Dean hopes in the Fall she can go full time. How old is your daughter, mine is 45.

@gloriajean

My daughter also has IBS, it's associated with EDS, that, and GERD, bad heartburn. I have read there can be pregnancy problems, also, but I don't know to what extent.

My daughter is in her 30s now. Looking back, she and I both showed symptoms as children.

I do some minor stretching exercises in the computer chair, it seems to help with the base of my spine.

Teddie · ‎03-10-2010

It always makes me sad when I know people are suffering. Just can’t imagine how you all go through what you do—and your loved ones, too.

I just prayed for you all—daughters, too. ❤️

Noel7 · ‎03-09-2010

wrote:
It always makes me sad when I know people are suffering. Just can’t imagine how you all go through what you do—and your loved ones, too.

I just prayed for you all—daughters, too. ❤️

Thank you @Teddie

That means a lot to me

cherry · ‎03-09-2010

You might like to have them try DGL licorice tablets for the heartburn and gerd. It is very soothing, and the substance starting with the letter* G* that raises blood pressure, has been 99% removed...There is a digestive clinic in Maryland ,and on their website the gastro Dr suggests using it. As far as I have been able to discern from taking it myself, it is free of side effects @gloriajean @Noel7