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Ehlers-Danlos Syndrome Online Support Group

Crickets, silence around here. New members lets start talking!


#1

It seems a little quiet around here, so I thought it may be time to make a new topic. Is anyone new around here?

I just joined this week. I was diagnosed, clinically, with EDS in May 2017. I have a laundry list of other diagnoses as well, along with autonomic dysfunction being a key player also.

I don’t know what type of EDS I have. We got referred to pediatric genetics, but everyone in the entire state currently has a 1 1/2 to 2 year wait list. One of my other doctors was able to get in touch with the specific specialist that they want me to see and he said that in the interim we could try to get the first phase of genetic testing done. So right now we’re waiting on a prior authorization from insurance for the chromosomal microarray analysis. My neurologist for the autonomic issues is actually the one who diagnosed the EDS. He thinks that I also have a mitochondrial disease.

It’s all so complicated. It seems like we are peeling back layers and each one gives fewer answers and more questions. Frustrated for sure.

I’m 33 and have been unable to work since I was 29. On top of having to accept new medical problems, I’m also having to grieve the loss of my old life and figure out how to adapt to the ever evolving “new-normal”. It’s really hard.


#2

@trust_level_0

@trust_level_1


#3

Hello Firefly84!
I’m new to this group as well, I’ve been a member of BensFriends on the Sjogren’s board for awhile. I have yet to be officially diagnosed with EDS, it’s been very confusing for me. Small history: GP didn’t want to dx told me to ask my rheumatologist. Rheumy said that she wasn’t familiar enough though she’d known since my first visit that I definitely had Hypermobility all over. She doesn’t seem to think that a dx is all that important. Injured my shoulder and was sent to an orthopaedic specialist, I mentioned being Hypermobile and felt I had EDS, his response: “Ehlers-Danlos, yes I can already tell, let’s have a look at that shoulder”. Just saw my new Internist last week, of course I’m seeing her for the first time because I might have mastoiditis, I mentioned the EDS and she just wanted to focus on blood tests for inflammation and getting a CT scan set up. Grrrr… This is so frustrating- so glad you had a neurologist actually dx you, I can’t afford another dr right now or all kinds of expensive genetic testing. Was yours determined by history, or genetic testing?
As for dealing with your new normal… I’ll do what I can to help you, I’m continuously having to define mine and understand how time consuming, emotionally draining, and just flat out difficult it can be. There are happy moments too though, you are on a new adventurous journey- it will have some downs and some ups- you might need to get a bit creative, find reasons to smile and laugh… if it helps- you’re considered a Zebra by some a Unicorn by others, not just a horse. (Old medical ‘joke’ if you aren’t familiar with it I’ll send it to you).
Sorry if I rambled on and growled a bit, was so excited to see someone had posted on this board that I just let it all pour out. Good news- your turn.
Hope to hear from you in the future. Don’t be too stressed and tense in life, stay loose.


#4

@Rae71, thanks for the reply. You didn’t ramble on at all. It’s nice to hear somebody out here!

I’m sorry you are going through such a frustrating journey also. It seems to never end doesn’t it? My EDS was diagnosed by history, also scored 6/9 on the Beighton scale. I meet the major criteria for hypermobile EDS, but we are waiting to get in with pediatric genetics currently to determine further.

I actually had already been wondering if I had Ehlers-Danlos before my neurologist brought it up. My joints have always been an issue. I guess it is one more thing to add to the pile.

You are absolutely correct, humor is the way to get through. That is the reason that I’ve been able to survive being home for the last four years…being able to laugh at something gives a positive spin on the day. One day at a time.


#5

Hi, this board is so quiet- guess it will be up to the two of us to get things moving. :slight_smile:

On the Beighton scale I’d score a 9, but my rheumy only asked me to do the thumb test- she really doesn’t understand the scoring obviously. I even showed her an extra one I can do that not many can- tongue to tip of nose, and I can do the palms flat together behind my back as well as rotate legs so one foot points backwards while the other remains forward. My ‘tricks’ go beyond that, but not quite Jim Carrey level. Of course as I’m getting older I’m getting stiffer, which I believe actually adds to my pain levels. I also have a shoulder that likes to subluxate, was born with hip dysplasia though to this day every now and then my left hip ‘pops’ out of where it’s supposed to be as well as my left knee has a mind of it’s own sometimes.
When I first heard of EDS I ruled it out, then I really researched it and thought- oh… my doctors should know about this and with my other health problems this should be added. I was basically ignored of course. I think I’ll try again at my next appointment as I was checking up on the debate: Hypermobility vs. EDS and I believe the debate may be over: HEDS although I worry that I might have a different type I just can’t really afford the genetic testing.
There is another debate out there- would love to hear your opinion. To stretch as our bodies want to or to limit ourselves to stretch like the ‘normal’ people so we aren’t overstretching our bodies. If you haven’t read about this I suggest you do… I think we should stay flexible, but that can lead to us being even more floppy as we age. What are your thoughts?
I actually suffered a back and knee injury around age 20, I basically haven’t ‘worked’ since and I’m now 46. For many years I ran my own business online (no paycheck, but it was something I enjoyed) until the Sjogren’s began kicking my butt.
I paint, crochet, knit (a ton of other hobbies), have many houseplants and pets that all keep me busy. I also play facebook games in between researching stuff online. What do you do to keep your mind and body a bit active?
You need to find things you enjoy and then it goes from surviving at home to thriving at home. I like to say: I enjoy my cage, it’s fairly spacious. I can nap if I’m tired, wear comfy clothes, and when I feel up to it I can hit the town. It is hard and people don’t understand, they think it’s really cool to be ‘retired’ so early… they don’t understand invisible illnesses- but all of us on these boards do. You’re part of a huge family of people that get it.


#6

Sorry for the wait. I saw the reply and just remembered that I hadn’t posted. :blush:

To keep busy, I’m a rare disease patient advocate and blogger. I’m involved with several patient advocacy organizations and that gives me a lot of satisfaction. It makes me feel useful. I also quilt when I feel up to it.

I’m with you, naps are precious and I truly love being able to live in comfy clothes all the time. I miss not being able to work. But I did finally get a disability hearing scheduled for next month, so fingers crossed!

Hope you have a Merry Christmas if we don’t catch up sooner. :christmas_tree::snowman_with_snow:


#7

Wow, you keep your mind busy… once upon a time I would probably be joining you- I do have a lot of good days, but my brain often gets fuzzy a lot so I haven’t gotten as involved as I’d like to sometimes. Heck, I’ve been meaning to start a blog about one of my birds and still haven’t managed that- let alone some other projects… but I do stay active and that’s more than some can say. Can you send me your blog address on here (not sure if it’s against the rules) so I can read it?

I’ve always meant to try quilting, my goal this year- learn to knit socks (can’t figure this one out so far), perhaps next year my goal will be a quilting project. :slight_smile:

I’ve got some news: either my new doctor goofed or she finally clarified something. I carry a list of my illnesses, meds and doctors with me (just in case) and at appointments it’s easier to hand over a list then to verbally go over one. On my list I had: Hypermobility or EDS (depends on doctor asked). I had this listing as one doctor has me listed as Hypermobile, other doctors would verbally says EDS but not written. Well, when reviewing my internists notes I saw: Ehlers-Danlos Syndrome (confirmed).

She didn’t test me at all, we didn’t even fully discuss it. I’ll take it though- it has been officially entered into a medical record. I guess I’m diagnosed.

I hope you have a Merry Christmas as well, thank you. :christmas_tree::snowman_with_snow:


#8

Yay for a diagnosis that is listed! That is always reaffirming. It’s amazing the small things that we consider victories. We wish we didn’t have it, but the acknowledgement is empowering in itself.

Oh! I forgot to throw my two cents in the last reply about stretching. There was an article that I read a couple months ago that discussed this exact topic. It said that the urges EDS patients have for stretching is actually harmful because we are pushing our joints too far and can be damaging them. It recommended gentle stretching. I’m going to have to look for the article and post it.

I think sharing blog sites is off limits…I think. Would enjoy sharing, but it also takes away our privacy to an extent, even though it is written under a pen name.

I’ve always wanted to learn to knit because I thought it would be relaxing. The quilting is very relaxing, except for my neck gets very sore at times.

Will talk soon!


#9

I’ve read articles for and against stretching. I know that things like Yoga is considered by most a big no no (overstretch and long holding on positions). I do gentle stretches personally— gentle for me that is. For most people it would be an overstretch, it’s the concept of limiting my movements that I am a fence sitter. For instance- bend to touch toes… since childhood the palms on ground was natural (still is) thing for me, this would be an overstretch for most. I know that if I haven’t stretched for a few days that my joints become extra sore and my legs feel tight… bend down palms on floor once or twice and I feel wonderful. Do you stretch like ‘normals’ or like a stretchy person?

Hmmm… I don’t know if blog sites/personal info. is off limits or not. I know people on the other boards can post links to articles off site that pertain to the topic, such as I could post a link about an EDS article I recently read and it wouldn’t be a problem. If you’d like (as neither of us wants to be kicked off this board) I could write the admins and ask if we are allowed to post personal stuff. I think it is just a way to suggest safety.

Knitting is great, but it can cause my hands to cramp some times. My main problem is when the brain fog attacks- a bit difficult to focus on the number of stitches or type of stitch when everything goes all mental blur. What would you say is the most complicated thing to learn about quilting?


#10

Oh my gosh…the hardest thing to learn about quilting is cutting straight edges…that is still my biggest problem! :slight_smile:


#11

Hello there firefly84 and Rae71!

It is so nice that you’re carefully considering whether or not to post links. As you’ve noted, it’s all about site security and members’ privacy rather than trying to catch you out. We’re certainly not looking to kick you off! I’d like to give you a quick, definitive and yet comprehensive answer but I’m struggling with that! The site etiquette gives some guidance:

If you’re not sure about a link, please feel free to check it out with Moderator Support in a personal message. That way the 3 of us can put our heads together & get back to you ASAP.

All the best,

Christina from Moderator Support


#12

Straight edges… well… ummm… I could try? I know I can do pretty good free hand drawing a straight short line, but if I use a ruler it ends up with bumps and slightly slanted- LOL. I’ll still give quilting a try though.


#13

Thank you for attempting to describe the etiquette. Perhaps there could be a section where links could be listed for good articles or blogs to visit? They could be suggested to the moderators who could visit and if it’s not offensive and provides good information perhaps it would be listed in one easy to access location?

I know from being on the Sjogren’s section that members do provide some pretty useful links in discussion board postings- but if an individual didn’t get around to reading that particular post they wouldn’t find the link. I recall one started off as a topic about “I’m New” (or something) and as each of us wrote back and forth eventually someone posted “The Spoon Theory” link, and then more links showed up. How many people have missed out on this because the conversation happened more than a year ago?

Thanks for having an EDS section and all the others, we aren’t alone- these sites help us to know that.


#14

Great idea! We now have a place for that here

Some of our communities have a separate category for things like this. ModSupport will look into seeing if we can get one set up here.

Hope this helps, and thanks for bringing this up

Seenie, Christina and TJ of Moderator Support


#15

@modsupport thank you! @Rae71, great idea!


#16

Hi,
As a new member, I haven’t really shared my story, but I can add that you are absolutely correct about stretching! I was diagnosed clinically at 62 when a toe on each foot spontaneously dislocated. I have always had painful feet( I remember being sent to the school nurse in 3rd grade for it), so I wasn’t really surprised. I’m an RN so I have done lots of research as well. The more you stretch your body into positions that normals couldn’t do, i.e. show off your hypermobility “tricks”, the more likely you’ll have problems as you age. I can tell you that my body is proof of that! I’m now 65, and have had three rotator cuff surgeries, 6 amputated toes and more pain in my joints than ever. You do need to strengthen the muscles that control your joints(if possible) to keep them more stable; you also need to keep your core strong to help with your balance. My skin is extremely fragile now— it bruises and tears very easily. Last year I tripped and bumped the edge of a piece of furniture and tore a full thickness flap of skin—8 inches by five inches—from my lower leg that was laying on the floor next to my leg. Of course being a nurse who has never seen my own fascia, bone and muscle, I thought it was cool to see, until the pain registered! :smile: It developed cellulitis so I was in the hospital with a PICC line and strong antibiotics for 11 days—during which part of the flap died, requiring a full thickness graft.
Bottom line: take care of yourself now to help yourself in the future and never lose hope—we are strong people because we have to be! I have more to say but will end here. Just know you are not alone!


#17

Ouch! You’ve certainly been put through the ringer. I’m having more instability with certain joints, though due to my other health issues and medications I just really don’t get up and do much. I know over the past few years I’ve have more strains and tendon problems, basically whenever I try to ‘exercise’, like short walks- did something to my plantar fascia on my right foot (doctor and I disagree on severity)- I actually don’t go in to the doctor with most my issues as 1) they are typically ignored, 2) costs too much and , 3) they want to access based on pain scale (I’m on pain meds) and range of motion tests (which don’t really apply to us stretchy people). My skin is getting a bit more fragile, worse so far for me is that I heal really slowly and scar easily… I can’t even imagine what it must have been like for you to sustain such an injury. As for strengthening my core, well several years ago I was doing pretty good with this with dancing for my birdies (can’t move too quickly around them), sit ups are out, holding poses for long is out, I do work on kegels and pulling my tummy in with slow release other than that I just do simple stretches.
I’m starting to take vitamins, trying to research at the moment the proper amount of B12 I should be taking. I began today with 500mg, though with autoimmune issues and the medications I’m on I wondered if I should be taking more than the standard dose for the healthy. This research is going a bit slowly. Good thing I like research.
No more tripping for you and do your best (as will I) to avoid those nasty surgeries.

If you celebrate- have a happy holiday season!


#18

I am 16 years old. I also have a plethora of diagnoses and have the same issue. I was diagnosed with EDS Type 3 with Hypermobility in April of 2016. I had done karate for 4 years and have always been an extremely active person despite the chronic pain, mostly due to stubbornness. The rheumatologist had been convinced it was JRA, so he had thrown medication after medication at me, despite the fact that there was little to no inflammation in any of my joints. I mentioned the stretch marks and he just looked at me and said “Grace, you will never be able to do karate again. Or any other impact sports for that matter.” That meant no rugby, or soccer, or trying out for track. Teenagers will pick at anything, whether it be something that can be controlled or not. So when you are seen with a cane or a wheelchair, you have to find something to make them stop, or at least to partially understand. The hardest part for me was ,losing everything I was and having to rebuild myself from literally nothing. I went from incredibly strong and active to not being able to move or get out of bed. I understand the struggle as it took us 6 years to get this diagnosis. Not that it does much for me. Due to the fact that I am a minor with so many medical issues, including mental health and neurological problems, very few doctors are willing to touch my case. Laws around certain medications have made it so that I can no longer have access to the one pain medication that does anything for me. They instead gave me Tramadol which is basically expensive Ibuprofen that makes you tired and gives you vivid nightmares and causes sleepwalking. As a result, I don’t really take that either.

Long story short…EDS sucks and I’m really sorry that you have to deal with it. I understand what you are going through, although I am worried about how college and jobs will go if I have a flare up while I am doing those, which I feel is inevitable.

I am here for you. Let’s rebuild ourselves.


#19

Wow, you were diagnosed early compared to so many of us who don’t get a diagnosis until we hit adulthood and then have issues start rearing their heads. Once I was told that I had EDS, I was able to look back and recognize a lot of the traits that had been staring me in the face for so long.

I actually just saw a genetic counselor last week and will see the geneticist in October. At that point we will determine what testing needs done. There are so many moving parts with my multiple conditions, that it makes it difficult. My neurologist thinks that there is also a mitochondrial disease that is playing into everything.

Knowledge is empowering, but at the same time is something else that you have to accept. Sometimes ignorance is bliss. We’ll see how it goes. I’m just afraid that we’re going to find more things that we can’t do anything about, aside from watching them progress.

In the meantime, we live our lives one day at a time. We can’t be afraid of what hasn’t happened. Thanks for reaching out! Looking forward to chatting more!


#20

I am thankful that my mother is who she is. She fought for my diagnosis for 6 years and had it figured out before any of my doctors did. without her, I would still be suffering without any knowledge of a cause or any type of relief.