Ehler-danlos Folks - Help!

[dianaD]

Hi guys,

I'm off to Mayo next week, and I'm going to ask them to check for Ehler-Danlos (I'm 95% sure that's what's going on, in addition to the POTS, of course).

My question for you is -- Can Ehler-Danlos cause loose ligaments to the diaphragm? My ability to inhale and exhale is very low, and it feels like my diaphragm muscle is cramping up. I've got loose ligaments every place else. Is it possible that my diaphragm is involved?

And, what kind of doctor can best diagnose and treat EDS?

Any info you have would be appreciated!

Thank you!

Diana

[calypso]

Hi Diana,

I do not have EDS. But I wanted to say that despite not having it, I do have the same exact breathing difficulties you have. So I guess what I am trying to suggest is that the breathing issue may not be due to EDS, or in your case it may. But for me, I don't have EDS but still can't breathe right. My doctor continues to think that it's either a microvascular circulatory issue (gas exchange in the capillaries that affects oxygen levels), or a neurotransmitter or vagus nerve receptor issue. He says he has seen two other people besides me in his 30-year medical career who can't breathe but have no physical, measurable reason for why.

Amy

[Guest Julia59]

Diana,

I wish I could help. The diagnosis for EDS is usually clinical, other then the blood test they do for the vascular type of EDS. I was diagnosed by The chiari Insittute, and The Cleveland Clinic. I'm on a waiting list for a study from NIH to get a more detailed evaluation of my EDS.

I have loose ligaments all over my body---------it's no fun on some days. I sometimes feel like my body can't handle any gravity at all, and I have more then the OI going on. I get a lot of joint pain now---much more then I used to. My hands are starting to bother me now----I never had that before. My whole back feels like the bones are set in pudding---I just feel like I have no support to hold myself together. Now i'm sure I do, but you know what I mean. Anyone with EDS knows what this feels like.

I do feel popping in the diaphram area, and if I drink anything with carbonation in it my chest nearly caves in, so I have been avoiding that. It only happens after I eat---and follow it with a few sips of sprite. I'm avoiding the sugar anyway. They are still doing studies on EDS. Unfortunately my EDS affects my spine a great deal, and it seems to have an impact on my shoulders---especially my shoulder blades in my back. The right side always goes out of the socket.

My jaw has a lot of trouble too. It's way out of alignment, but it's never popped out of joint fortunately. I'm starting to have trouble all over my body. About the only thing I don't have trouble with so far are my toes---LOL. Even the bones on top of my feet are unstable because the joints and ligaments holding them together are not stable.

I know this seems a bit dramatic---but this is the way it's been---it just seems to be progressing.

Julie :0)

[dianaD]

Oh, Julie,

I am so sorry that you are going through all of that!! It sounds so miserable...

Are you having trouble breathing, too?

If it helps, I have back and neck problems, and was told I have NO curvature left anywhere on my spine! My hip pops out, my shoulders (although that is painless), my fingers are starting to hurt, and ONE OF MY TOES pops out of joint. Boy, I bet you feel better NOW, knowing about my TOE! Actually, I hurt that toe a year or so ago, so that's probably a different deal.

Please hang in,

Diana

[stellakitty]

Hi

I use oxygen as I am hypoxic, and whenever I go to the pulmonologist and "blow in the thing" I flunk. My pulmonolgist felt this could be due to the EDS

[Lukkychrm42]

As for doctors, although I was earmarked for EDS by Dr. Abdallah, I was diagnosed by a rheumatologist- they deal with the musculoskeletal system/ connective tissues. He's sending me to a geneticist. There's currently not a gene known to identify Hypermobility type, but if your doctor suspects another type - or just to rule it out, then they'll probably perform a skin biopsy. (I meet with the geneticist in 8 days and they'll decide after meeting me/getting family history/ performing a physical exam if they're going to do the biopsy.) The rheumatologist did the hypermobility testing and stuff.

If you're going to a doctor regularly specifically for the EDS, it would probably depend on the types and severity of problems. For me, the person I see most regularly for it is my physical therapist.

[dianaD]

Thank you for your help!

I'll see if I can get in to see a rheumatologist when I get to Mayo!

Diana

As for doctors, although I was earmarked for EDS by Dr. Abdallah, I was diagnosed by a rheumatologist- they deal with the musculoskeletal system/ connective tissues. He's sending me to a geneticist. There's currently not a gene known to identify Hypermobility type, but if your doctor suspects another type - or just to rule it out, then they'll probably perform a skin biopsy. (I meet with the geneticist in 8 days and they'll decide after meeting me/getting family history/ performing a physical exam if they're going to do the biopsy.) The rheumatologist did the hypermobility testing and stuff.

If you're going to a doctor regularly specifically for the EDS, it would probably depend on the types and severity of problems. For me, the person I see most regularly for it is my physical therapist.

[persephone]

Yes I get this, and have been told it's EDS. If you do a search here you'll see it's been discussed before. No one knows whether it's 'just' my joints however, so I have angina spray too because the pain comes up my throat, into my jaw, down my arms etc, and I also can go quite pale with it. It stops me functioning- it is the worst pain I've ever suffered in my life. It turns me into a crying quivering wreck.

I hope you get some answers and relief.

[Guest Julia59]

Diana,

I do have trouble breathing sometimes, but it feels more like an asthma type feeling, or I get some chest pain, but it usually radiates from my back. Just typing right now I can feel my left shoulder blade trying to pop out----so weird. My left wrist hurts really bad for some reason.

I just want to get into that EDS study so I can find out what I need to do to get some relief of some of this. I know keeping the muscles toned is a good thing, but lately, I have used up all my strength just keeping up my home----trying to take some of the work of my husband. So I guess in a way, just the work I do around home helps, but I really need to strengthen my leg muscles more.

I also think my back and neck are affected a lot from the EDS.

Julie :0)

[MightyMouse]

I have HEDS aka EDS III, and I don't have the breathing issues you speak of. My only respiratory issues are related to allergies which then provoke asthma; and also, recurrent issues with pleurisy, where the lining around the lung sticks to itself, probably because my lungs are moving around more than a normal person's.

Nina