Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
Hi, I am brand new here. I am almost 58 and was diagnosed with EDS Type II (I think) when I was in my twenties, at a research and teaching hospital in Memphis, TN. My mother found out she had EDS at the same time.
I suffer pretty badly from all kinds of stomach and intestinal complaints, just as my mother did. I also have a form of tendonitis in both Achilles tendons, making it painful to walk outside of a support boot or brace. I have never suffered from dislocated joints. I would really like to know whether anyone else has chronic stomach and abdominal problems, including bad constipation, bloating, and poor digestion. I am on meds and am trying an OTC probiotic, too. But I am exhausted and wondering just how long I can keep my job with these difficulties. My mother had to quit work at my age, but she was married and I am single, and have no other source of income. This causes me serious anxiety, as I can't seem to learn anything from the people I've consulted about any forms of help for people like me, possibility of getting on disability if I must, etc.
I don't want to be "disabled", I don't want to risk losing all I've worked so hard for all these years. All I can find out about disability is, a person must be unemployed for at least a year before they can submit an application, with no visible means of support, which I don't understand. It seems cruel to tell people they have to be destitute before they can receive help. What about food, medicines, shelter in the meantime? But I don't want to dwell on this topic right now. I would appreciate hearing from anyone with EDS and severe stomach, digestive, bowel problems, and maybe also tendonitis or similar inflamed joints, and what they did about it, how they coped, etc. Thank you!
artsygal
I suffer pretty badly from all kinds of stomach and intestinal complaints, just as my mother did. I also have a form of tendonitis in both Achilles tendons, making it painful to walk outside of a support boot or brace. I have never suffered from dislocated joints. I would really like to know whether anyone else has chronic stomach and abdominal problems, including bad constipation, bloating, and poor digestion. I am on meds and am trying an OTC probiotic, too. But I am exhausted and wondering just how long I can keep my job with these difficulties. My mother had to quit work at my age, but she was married and I am single, and have no other source of income. This causes me serious anxiety, as I can't seem to learn anything from the people I've consulted about any forms of help for people like me, possibility of getting on disability if I must, etc.
I don't want to be "disabled", I don't want to risk losing all I've worked so hard for all these years. All I can find out about disability is, a person must be unemployed for at least a year before they can submit an application, with no visible means of support, which I don't understand. It seems cruel to tell people they have to be destitute before they can receive help. What about food, medicines, shelter in the meantime? But I don't want to dwell on this topic right now. I would appreciate hearing from anyone with EDS and severe stomach, digestive, bowel problems, and maybe also tendonitis or similar inflamed joints, and what they did about it, how they coped, etc. Thank you!
artsygal
Anyway, I have had tendonitis of other joints in the past, but can't say I know why it went away. Stomach problems can be from EDS, but I'm not sure anyone understands the connection. I expect that diet affects whatever the condition is, though maybe you've done as much as you can about that.
And I know the thought of becoming disabled is incredibly scary, but there's always a way to survive. Once I became disabled, it hit pretty quickly, and because my doctors knew that EDS is degenerative and I would not heal from this (as opposed to say, a car accident), they encouraged me to apply for social security disability right away. So there are definite loopholes, but it still takes a minimum of 6 months to get a decision on whether you're approved or not. Most people are not approved the 1st time they apply. I'm not trying to discourage you, I just want you to have the information you may need. I'd be happy to discuss all of this in more depth with you, if you're interested. Just send me a message and I'll do whatever I can to help you and share any information I've come across. Best of luck with everything!
I also am about your age and have classical EDS. Yes to stomach issues! I actually go to a gastric doctor and he has helped me with medications. He also gave me an over the counter probiotic called Aligin. It helps me a lot. Maybe it would help you too. Also eating smaller more fequent meals has also helped me. Might want to get to the doctor who can see what's going on there. I also have a hiatal hernia, also common for EDSers. Email me if I can help further.
artsygal
As far as disability, I was forced to leave my job over 2 years ago, applied for disabilty and was immediately approved. Its not the nightmare you always hear it is. It has a lot to do with how much you provide them with, details on what you can't do anymore, and knowing how to properly complete paperwork. I had the added benefit of having worked at an agency related to them so was familiar with the process. I am single too, so can relate to the added fear of what to do with no income. I managed to make it through. you don't have to be unemployed for a year- I applied in one month and my checks started 3 months later the first time I applied. No one I don't think can understand the added stress of being single fiancially but its also scary to have to deal with illness of this sort alone. There are a lot of benefits you may be entitled to. It was my job to know how to help others with disabilities so I was able to help myself, though I never expected it to be me. Where are you in regard to all of this?