Dysautonomia (Autonomic Dysfunction) Community
Looking for others with a EDS Dx-
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Looking for others with a EDS Dx-

Hi....I am looking for others that may share the Dx of EDS- Ehlers Danlos Syndrome.

I was Dx with this last week and was wondering what type of issues u have as a result and the treatments u may hve had.

I also have chiari malformation, cervical spinal stinosis,DDD,tethered cord,cranial instability, mild scoliosis and EDS.
And not sure if it's related to ne of the above, but I also have Hashimoto's thyroisitis and a hiatal hernia with acid reflux.
I believe I got them all....oh yeah fibromyalgia.
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29 Comments Post a Comment
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492869_tn?1285022533
I have hypermobile joints with an unofficial diagnosis of EDS III.  It's the most common form, and the least severe I believe.  Do you know which type you have?  What symptoms are you dealing with right now?
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620923_tn?1405964489
HI...I was told I had hypermobile joints...my thumb can extend back and touch the underside of my forearm...skin easily bruises...slow to heal....I thought I had raynauds bcuz my hands and feet always hurt and r cold...I was told it is the EDS.

I also have IBS issues.

What are ur symptoms and what are u doing for them?

"selma"
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492869_tn?1285022533
It seems we have the same type.  I'd recommend starting with a Physical Therapist.  He/She will be able to help you strengthen the muscles around your hypermobile joints, and learn simple exercises that you can perform at home.

Make sure your Physical Therapist is aware of any physical limitations you have first though.  For example if you cannot stand for too long because of Dysautonomia, or if your head is sensitive to pressure because of Chiari, etc.
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620923_tn?1405964489
Yeah...I can't do nething like that right now...PT is out. I also have tethered cord and my chiari I also have restricted CSF flow so it is diff to do nething like that right now.

I wasn't sure what the treatment for this could be, since I was told last week I had it.

IS it possible to do something sitting...what benefit could that be?

Has the PT helped u?
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620923_tn?1405964489
IS there ne one else with EDS here???
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492869_tn?1285022533
I'm not sure, but I know there were in the past.  Also too, joint hypermobility is relatively common in Dysautonomia.
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881165_tn?1265988188
Yes, I too have EDS, but I just joined.  Hey, your IBS and cold hands/feet along with the dysautonomia makes me think you should look up small fiber neuropathy (sometimes mislabeled autonomic neuropathy).  It can be a complication of the hypermobility type.  This is my "bible" on EDS.  They update it faster than I get new symptoms.  http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3.  If the link doesn't work, go to www.genetests.org, click on GeneReviews, and search for Ehlers-Danlos.  It's a lot of info, but well worth the read.  This is where I learned about the small fiber neuropathy, the day before my biopsy came back showing that I had it.  Here's a quick and dirty on autonomic neuropathy, because I can't remember any of the in-depth websites.  http://www.mayoclinic.com/health/autonomic-neuropathy/DS00544
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620923_tn?1405964489
HI, thanks for sharing the info.
I also have othe dx's that affect my IBS or bowel issues and am being scheduled for surgery.

I never heard of small fiber neuropathy......I will look into it to see if that is more the reason than the one I am considering surgery for.

Thanks again
"selma"
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881165_tn?1265988188
Found a slightly better website for the neuropathy.  Don't you hate it when you find a great website and then forget to bookmark it?  
http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm
Now, off to your poll...
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620923_tn?1405964489
Thanks for the info and participating in my poll!! : )

"selma"
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186737_tn?1269888260
I'm nudging in to this conversation because I saw you have problems with dysautonomia along with eds. My sister and I do too, but she has it super bad. I don't have enough of a problem with circulation to need to see someone about it. I just drink a ton of caffiene and all is good. However, there is a specialist in toledo (I noticed you are in PA) who specializes in folks with EDS with dysautonomia. His schedule is pretty booked, but if you haven't already seen someone who specializes in EDS with dysautonomia (i'm not sure there are a lot of folks who have that specialty), you might want to consider seeing somone. there are a few medications that can really help with the problems with standing up n such.
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620923_tn?1405964489
Hi...I am not really sure if my issues r dysautonomia...I do have chiari, tethered cord, DDD, cervical spinal stinosis, cranial instability and EDS...I was told I had raynauds but when I was dx with EDS the dr said it was most likely the EDS causing the raynauds like symptoms.

May I ask r the drs that treat this rheumatoid drs??

Thanks
"selma"
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881165_tn?1265988188
Rheumatologists are the ones who most often treat EDS, although not all of them have familiarity with it.  Geneticists also deal with diagnosing it, but don't get into the joint issues as much.
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620923_tn?1405964489
Thank you...I wondered bcuz it was a rheumitoid dr that dx my chiari and then dropped me from his patient list bcuz chiari is a neuro problem.

I wonder how he missed it.

"selma"
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881165_tn?1265988188
I can't do PT for EDS either at this point because I pass out so easily and have terrible pain with repetitive joint movement.  I'm seeing rheumatologist in June at Cleveland Clinic afor the first time and I'll let you know if she has any good suggestions for therapy, joint bracing, etc.  Do you think you can spend any time in a pool?  That's a good way to exercise without pressure on the joints.
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620923_tn?1405964489
Hi...as a matter of fact my sister has a pool and I can't get in it bcuz of the ladder...she asked my DH to build steps so it would be easier for me and she said it would be good for me  especially since I am going for surgery.....

So I am planning on trying that and my NL suggested the Feldenkrais Method.....I got the book, but not comprehending it right now....but it is also highly recommended by my DD!!...lol.....

Thank you for sharing

"selma"
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186737_tn?1269888260
My sister sees a cardiologist for the orthostatic hypotension and tachycardia. The doctor in Toledo is a cardiologist. Funny thing as per rheumatologists. My local one just gave me the boot unless something comes up that he can treat. I guess he figured that I have enough other doctors helping me that h is not needed. He said there is no treatment for EDS, so there is nothing for him to do.
As for the folks discussing the pool. I go to the pool a lot these days which is funny because I really don't like swimming or pools. However, the pool at the physical rehab place is only 4 feet deep and is kept at 95 degrees. It really feels good to move around in there. I can move in there much better than I can on land. It's ll good until I have to get out of the pool and then gravity hits hard. I'm not overweight at all, but it sure feels like I am when I try to walk around after having been weightless in the pool.
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612876_tn?1355518095
Just wanted to post a quick note on swimming for those who have heat intolerance and/or problems vasoconstricting appropriately (i.e., blood pooling).  Swimming or soaking in water that is heated to higher temperatures is not advisable for these conditions, for obvious reasons with heat intolerance, and because heat causes vasodilation (expansion of the blood vessels).  Ideally, water is warm enough to be comfortable, but nowhere near as warm as a hot bath or a jacuzzi.  (That's right, my hot tub days are over.  Sigh.)

I personally have fainted in a hot bath before and nearly drowned, so I know firsthand just how dangerous this can be.  On the other hand, I do quite well with swimming as a form of exercise if the water temperature isn't too high.  Just be cautious and please please please always swim where there is a lifeguard or you at least have someone with you!
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881165_tn?1265988188
Good point.  I forgot to mention that.  My PT won't let me near a pool because the increased pressure feels great while I'm in, but when I get out, the rapid decrease in pressure makes me faint every time.  And I love to swim!  I too have passed out from hot water, thankfully a shower.
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492869_tn?1285022533
Excellent point Heiferly!  I'm really happy you didn't drown.

This too isn't exactly on-topic with the EDS thread, but I wanted to suggest supplemental oxygen as a possible option for showers.  I've found it to be somewhat helpful in keeping conscious.  You maybe somewhat less likely to drown in the shower, but I've gotten a concussion in the shower before.  Please be careful with shower fainting episodes as well AireScottie.
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866792_tn?1244219760
Is there a specific test for EDS?
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881165_tn?1265988188
Some forms of EDS can be confirmed with biopsy or gene testing, but not all forms.  The standard for diagnosis is usually the Beighton Scale, where your doctor looks at how overflexible certain joints are in your body.  There are nine points they look at.  The easiest to describe without pictures are: if you can lean forward and touch your palms to the floor while keeping your legs straight (1), if your elbows bend backward (2&3), if your knees bend backward (4&5), if you let your hand flop forward and you can use your other hand to push your thumb all the way down to the inside of your arm (6&7).  Okay, that last one is hard to describe.  8 & 9 have to do with your pinky, but I don't remember what you have to do.  There are some good links in the health pages in the upper right of this forum
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620923_tn?1405964489
HI...may I ask r those of u with the fainting issues bcuz u have POTS or some other condition....it isn't just EDS ??? I am confused as to the issues u r talking about here.

I have chiari, tethered cord and EDS.....I have had drop attacks....diff from fainting...but u fall regardless.

I am confused I hope someone can explain

"selma"
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492869_tn?1285022533
Not everyone with Dysautonomia faints, but many of us do.  The fainting is related to our Dysautonomia, not the EDS.  Though EDS is common is Dysautonomia.  I hope that helps.
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620923_tn?1405964489
I guess so...so u can have one without the other.

I am trying to learn as much as I can about EDS...so I am not well informed on Dysautonomia....

Thanks
"selma"
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881165_tn?1265988188
Yes, you can have EDS without dysautonomia.  I think some people assumed you had dysautonomia because this is the forum for it, and then we got off track a little.
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612876_tn?1355518095
Sorry selma,

I didn't mean to toss confusion into the mix.  EDS without dysautonomia would presumably not cause fainting.  My concern was that because this conversation was occuring in the dysautonomia forum, a person with dysautonomia might read the thread and not be aware of the potential hazards that swimming in hot water can present for dysautonomia.  Not everyone who gets diagnosed is warned about this, so I think it's important to get the word out at every opportunity.

To be clear, just as not everyone with EDS has dysautonomia, many people with dysautonomia do not have EDS.  Let me know if I can do anything else to clear up the confusion.  Again, I'm really sorry about that!
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492869_tn?1285022533
Oops, I think I had a typo in previous response.  Heiferly explained it much more clearly though.  Thank you Heiferly!
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620923_tn?1405964489
That is ok...I am just learning about EDS and do not know enuff about it, and it seems there r some in this forum with it as to other forums within this site.

I am sure I will learn as much about EDS as I feel I know on chiari......
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