topic Re: EDS in Wellness

EDS

gloriajean — Fri, 02 Feb 2018 06:21:37 GMT

My daughter today was diagnosed as having EDS. There is no cure, lots of pain. So far she needs to have an EKG because sometimes that affects the heart. Then counseling. And is referred to another pain management doctor. The Specialist, is the only one in town who deals with this, and she is very good, and is booked so far in advance, so her next appt. is in 2:1/2 months.

She's the mother of the twins who are now a year and a half.

Re: EDS

Kachina624 — Fri, 02 Feb 2018 07:26:40 GMT

@gloriajean. I'm so very sorry to hear of your daughter's diagnosis. I'd never heard of this condition so looked it up.

https://www.ehlers-danlos.com/what-is-eds/

It sounds as though it's similar in some ways to Fibromyalgia in that it affects individuals differently and to different degrees. It must be considerably more serious than fibro.

I hope your daughter has an excellent specialist and can receive great treatment so she can continue her life with her family. She's lucky to have you and a great support system. I'm sure there will be many people here praying for your family and wishing you the best. Please keep us up-to-date on how she's doing.

Thinking of you.

Re: EDS

qualitygal — Fri, 02 Feb 2018 09:55:04 GMT

@gloriajean,

Gloriajean I agree with Kachina and will be praying for your daughter and the family. I'm sorry this is going on for all of you. Best wishes to all.

Re: EDS

Carol Diane — Fri, 02 Feb 2018 11:52:23 GMT

gloriajean, my daughter's husband's family is diagnosed with v-EDS so I am much too familiar with all the forms. I am praying that gene editing will eventually be able to cure this disease. I pray for relief from the pain and issues your daughter has to deal with. Do the twins have to be tested yet? My grandchildren did and they are 3 and 5.

Re: EDS

meallen616 — Fri, 02 Feb 2018 14:48:08 GMT

@gloriajean,So sorry to read about your daughters diagnosis. She is lucky to have a great support system. Miss seeing pics of the twins!

Re: EDS

cherry — Fri, 02 Feb 2018 16:16:13 GMT

Gloria my dear friend ,I am so sorry to read of this sad news. Be assured she will be in my prayers

Re: EDS

happycat — Fri, 02 Feb 2018 18:16:59 GMT

I'm so sorry, @gloriajean. Your daughter will be in my prayers as well.

Re: EDS

gloriajean — Fri, 02 Feb 2018 18:31:04 GMT

Thank you all for your prayers which are greatly appreciated!! I'm feeling a bit down right now, but it all will be okay. God's Will be done.

Re: EDS

Noel7 — Fri, 02 Feb 2018 19:46:40 GMT

@gloriajean

EDS is like a spectrum disease imo, It's not always awful for everyone, it can be managed. At the other end of the spectrum, there are people who need braces to walk.

It's a collagen problem, bones can slip out of place, you have to learn to be careful about movement. It can also affect the skin which tears easily. Your daughter needs it on her medical record, in BOLD. Her doctors need to know of her diagnosis.

I was diagnosed with EDS several years ago. My daughter also has it.

Re: EDS

Noel7 — Fri, 02 Feb 2018 19:55:23 GMT

Background

"Ehlers-Danlos syndromes (EDS), the name given to a group of more than 10 different inherited, clinically and genetically heterogeneous group of connective-tissue disorders, involves a genetic defect in collagen and connective-tissue synthesis and structure. In 2017, a new international classification was proposed with 13 different variants. [41]

Ehlers-Danlos syndrome can affect the skin, joints, and blood vessels. This syndrome is clinically heterogeneous and has been classically divided into six types (classical, hypermobile, vascular, kyphoscoliotic, arthrochalasis, and dermatosparaxis), with the underlying collagen abnormality being different for each type."

My daughter was diagnosed as hypermobile, I have the larger diagnosis of EDS.

Re: EDS

gloriajean — Fri, 02 Feb 2018 19:55:35 GMT

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.

Re: EDS

SXMGirl — Fri, 02 Feb 2018 19:57:35 GMT

@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.

Re: EDS

Noel7 — Fri, 02 Feb 2018 20:10:57 GMT

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.

Re: EDS

Trinity11 — Fri, 02 Feb 2018 20:16:05 GMT

@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.

Re: EDS

gloriajean — Fri, 02 Feb 2018 20:22:24 GMT

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.

Re: EDS

Noel7 — Fri, 02 Feb 2018 20:26:31 GMT

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.

Re: EDS

Noel7 — Fri, 02 Feb 2018 20:34:00 GMT

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.

Re: EDS

Teddie — Fri, 02 Feb 2018 20:34:44 GMT

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. ❤️

Re: EDS

Noel7 — Fri, 02 Feb 2018 20:39:00 GMT

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

Re: EDS

cherry — Fri, 02 Feb 2018 20:44:19 GMT

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