According to my geneticist, most patients with EDS don't need to be on full disability.... She said that even the more severe cases she sees they are able to work....at some level.

Now, this really upset me. I felt like she was minimizing my pain, and my inability to do every day things. I have a copy of her clinical notes and they aren't accurate. Sigh...

Of course, I still want to work... I just need to get things under control, find the best way to treat the pain, im going in to PT and OT with therapist that are familiar with EDS and hypermobility. And I've even considered getting certified as a medical transcriptionist so I can do most of my work at home.

On a good note, I got in contact with a woman at a senior citizen's center, who is looking for someone to teach knitting classes for the seniors a couple hours a week. I need to give her a call (going to do that tomorrow) and set up an interview/tour of the place.

That's very frustrating. I'm ineligible for benefits (SSDI:don't have enough work credits because I paid into SS before turning 21, and 21+ I mostly worked grant-based jobs at universities that didn't pay in/SSI:husband's income) but my geneticist said I might consider some kind of work on the phone if I could find a hands-free setup that didn't weigh too much (wants me off the computer so much)...I had to resign from my job at the library...leave my doctoral fellowship...had an independent contractor-type thing for an online research community that folded as of today...so now I bring in zero income.

I know how very frustrating it can be -- trying to parcel together little piecemeal side projects so as not to overwhelm yourself with a regular job, even a part-time one, things that you don't have to commit to long-term but don't want to burn bridges with, either. Fighting to keep your head above water and hurting your body in the meantime...

And to have the clinicians you trust saying otherwise...I'm really sorry to hear you have to go through this.

Good Luck and I am SO sorryt hat the geneticist passed on this FALSE information to your PCP...

Thanks for your support. I've been having a very emotional day today. Between this phone conversation, not having my psych meds until now, and dealing with everything. I've tried calling EDNF and have had no luck. I am going to try again. The geneticist wants to see my brother and me together. I am going to correct her information when I see her. The pain clinic stated that I have EDS with chronic, diffuse pain... which seems to be hinting at fibro as well. I'm not surprised. I have an appt with an OT/PT experienced with EDS and hypermobility next week.

I just felt aweful... like... on her report it said that I have not experienced any dislocations... SHE's the one that told ME that what I was experiencing was dislocating. She said that I do have hyperextensibility, but not in the hands (I do, I showed her) or the thumb to forearm (I do in one hand, I showed her). Not to mention other things in the file that were incorrect. I was pissed. She even said that it is a very painful and debilitating disease and that most people end up on narcotics... HOW do you work/drive while on narcotics??? It's just so frustrating.

Kerrilyn,

I don't have good answers but we're neighbors and if you want to PM me or be in touch, as I find resources here in the Boston area I'd be happy to share them. I'm going through a similar stage to you, I think, where everything is crappy but still "early in the game" and trying to be taken seriously and get access to care. I was dx. fibro years before HEDS...widespread, diffuse pain indeed...and no, you can't focus or drive or perform the same on narcotics. Or I can't. Just the pain alone has added a cognitive/mental handicap entirely separate from the depression or med side effects -- and I know I'm not crazy, because in my previous life I studied enough neuroscience and cognition to know what chronic, widespread pain does to a person.

And getting medical records corrected is a nightmare. My current primary somehow wrote that my husband has physically attacked me -- no one has ever done that, though I have a history of various sexual traumas/attacks at many points in my life -- and talk about not being taken seriously when I say "I don't know how this got injured" or "I didn't notice that bruise until now" or "I didn't do anything to get hurt, I just woke up this way". Nevermind when my "complaints"/problems are somehow scaled down from what I said to what the transcriber thought, or omitted entirely. I really feel for you.

Anyway. I hope tomorrow is a better day. Hugs if you want them.

So frustrating! I am so sorry that your doc is being so dismissive. I personally find the pain from EDS can make even the simplest tasks nearly impossible on some days. I have been disabled ever since I was 31, I have several medical issues...the main diagnosis that clinched my disability decision was asthma believe it or not (this was even before my CF diagnosis, I was in chronic and acute respiratory failure requiring round the clock oxygen at the time of my SSDI application). Of course my neuro and musculoskelatal problems also helped in their decision. I clearly could not function on so many levels...
Enough about me...I tend to ramble LOL. I pray that you get somewhere with your doctors. The whole disability process can be so daunting and frustrating. Don't give up whatever you do, if you are denied, appeal! Sending hugs, Sunny

WHAAAAAAAAAAAAAAAAAAAAAAT?

Send the doc to me. I'll handle it.

My docs have made it CLEAR that it is highly unlikely that I will be able to maintain full time employment.

Did he/she not even consider that you have other physical and psych problems to go along with this????

RAWR.

I don't know what she considered. I'm still battling an ED, dealing with crazy moods, most likely Borderline Personality, but I told my psych that I don't care about an official diagnosis, I just want to be better. My pcp is fully aware of my other issues... since she's the one threatening to put me back into a day program because I lost weight... I wasn't trying to, in fact I've been eating more! I guess its not the right stuff. She's aware of how distressed I am over the EDS and everything because I've been in TEARS in her office, describing the pain and fatigue.

I actually just got back from my psych appt and I was trying to explain something to her and she didn't understand what I was trying to say... I just wanted to scream, instead I burst into tears. Sigh... sometimes, I really hate being me... the physical me that is. My body doesn't work, and no one seems to understand me, when I try to explain it. When I try to explain my pain, they DON'T understand me. It's SO frustrating. I should make myself a PECS book (Picture Exchange Communication System) I think that's what it standss for.... I don't even remember any more.

Don't you wish dismissive docs could spend a day in your body? Yeah, EDS isn't disabling. Ha! I guess I mast have resigned so I could eat bon-bons all day while watching soaps.

My psych is actually really supportive and tries to understand. I have problems communicating. She doesn't down play my pain or my emotions or anything like that. It's so frustrating for me when I can't explain myself. After I had calmed down a bit, I told her what the pain is like. How I'm general fatigued and sore and achey. My best days are somewhere around a 4 on a scale of 1-10. My bad days are unbearable. Then there are specific joints, for example yesterday my fingers hurt so bad I wanted to rip them off and put them back together the way they are supposed to be. I told her what was hurting me at the moment and how bad. How the most comfortable I can get is in a somewhat lounging position on the couch with a pillow under my knees for support. We talked about some distraction stuff, so I am not just sitting there thinking about the pain. I've been doing more painting and drawing and a lot of reading to keep my mind occupied.

sometimes its so hard to deal with the emotions. I want someone to know, but at the same time I don't feel like talking about it, it takes too much effort to explain things...

Mhmm you've got PECS down right.

I've considered doing it myself...as I don't give any non-verbal pain/distress signals nor can I really describe what I'm feeling...esp. not in speech (sometimes I can in writing). A picture says a thousand words right?


We understand what it feels like. I wish no one had to though

Hugs

What is this about people thinking we can work when our bodies are in great pain, we're probably depressed, anxious or both and that's at the very least. What jobs out there give you time to do an hour or so of exercises in the morning before you get too tired to do them. Also, I haven't found an employer who gives you a good nap in the middle of the day.........and who can drive with all the meds? I'm in the SS process now, waiting for the first denial....its scary. Mary

Mary (and others)...

How can ANYONE including the Disability services of the Government or Doctors expect you to get a job and keep a job with all of these things against us (they would simply employ someone who they can rely on and not have to spend money manking concessions for etc)...

I'm with you Shaz... Seriously. I'm also still waiting on the first answer for SS. I just hope that my GP remembers how I actually am, an not what the geneticist is telling her. I have to wear braces EVERY DAY. Most times, I can't use my hands. They are simply too weak. I cant type with my finger braces on (they are ones my OT made for me and are kind of bulky), and I cant type with them for very long off. The joints in my legs are getting worse... and because of my arms/hand issues using crutches have become an issue.... I havent even TOUCHED upon the fatigue and pain... I'm just talking about mechanical issues and joints not staying together.... so, what am I supposed to do work wise?

Sigh... What's a disabled 20-something to do....

It is hard enough to get family members to understand the ramifications of this disorder much less the almighty government! TestyTiger, I hope that you don't get denied...I am keeping my fingers crossed for you. Whatever you do, don't give up and keep appealing their decision. I have read that a huge percent of applications are denied first time around, it gets better with each level of appeal. Unfortunately it is a very slow process and takes time...It just sucks that anyone has to go through all of this...I mean, who wants to be declared disabled? Surely not me, but I am...I could never hold gainful employment as a nurse ever again due to my conditions. Who would hire a nurse who relies on a vent for breathing, is wheelchair bound and on some serious pain killers? Would anyone? Like Shaz said, it would be a hassle to accommodate someone like me and costly (can you imagine what the health insurance would have to pay out on me alone?)

What kills me is that I know of people who take advantage of the system and get benefits even though they are clearly not disabled. I know of one man who got benefits due to severe back pain/ injury, his claim was that he could not stand /sitfor more than 10 minutes at a time etc...One day I caught him climbing trees, not a small tree, a HUGE tree...he scaled it to the top! I could not believe it, here he was supposed to be an inch away from being wheelchair bound (his words) and here he is climbing trees better than some monkeys!
Hang in there and hugs, Sunny