Re: EDS

Noel7 · ‎03-09-2010

wrote:
You might like to have them try DGL licorice tablets for the heartburn and gerd. It is very soothing, and the substance starting with the letter* G* that raises blood pressure, has been 99% removed...There is a digestive clinic in Maryland ,and on their website the gastro Dr suggests using it. As far as I have been able to discern from taking it myself, it is free of side effects @gloriajean @Noel7

Thank you @cherry I have a prescription medication for it, I can't think of the name at the moment. One a day in the morning. I will pass on your information to DD.

cherry · ‎03-09-2010

@Noel7 I am on Zantac and Nexium and I take this in between to ward off symptoms...it works as well as Zantac

Noel7 · ‎03-09-2010

wrote:
@Noel7 I am on Zantac and Nexium and I take this in between to ward off symptoms...it works as well as Zantac

That's good to know @cherry As I understand it, the pill I have is geared for helping with the heart meds, some of which can be hard on the stomach.

I do the lifestyle thing, too, you know, don't lay down until 3 hours after you've eaten, avoid spicy food and go easy on the alcohol if at all. No citrus at all, not much vinegar, etc.

cherry · ‎03-09-2010

@Noel7 beware of mint ,and cinnamon that is too strong...along with caffeine and chocolate

Teddie · ‎03-10-2010

@cherry wrote:
@Noel7 beware of mint ,and cinnamon that is too strong...along with caffeine and chocolate

Oh @cherry, you’re taking all the fun out! 😉

cherry · ‎03-09-2010

@Teddie if you suffered like I have, you would only be too glad to stop eating things ,that made it worse

Noel7 · ‎03-09-2010

wrote:
@Noel7 beware of mint ,and cinnamon that is too strong...along with caffeine and chocolate

Oh, yes, @cherry Definitely NOT mint! And caffeine and chocolate. Now that I have the new tummy pill, I can manage a cup of coffee a day, and the doctor said that would be alright. I don't know what it is, but I can handle chocolate. I love chocolate, I don't keep it in the house because I would eat it, but DH asked if I would like some for Valentine's Day and I said yes, I would get back to him with a list of my favorites, small box of See's, please

Moonchilde · ‎05-23-2010

There are definitely, as has been said, different aspects of this disease and different degrees of severity and symptoms.

I have a friend who was at one time a young, vibrant, very active business law/corporate attorney in a large law firm. From the time she was diagnosed with EDS, things just fell apart for her. Her employer knew what they had to do for her and what they didn’t have to do. She went out on what she fervently hoped was temporary disability, and at some point she was fired, let go, etc. They did the minimal and refused to do more than the law forced them to do. This was in CA, in Silicon Valley, at a law firm, with the nation’s most liberal workers’ rights.

She fought for years to get disability, with the full and aggressive support of every one of her doctors and a mountain of paperwork. She lost the ability to walk any more except around the house and sometimes not even that. Her version of the disease was anything that can happen, will happen. She had every symptom. Her hypermobility/joint issues were very bad indeed, and her GI issues made her utterly miserable. She was always totally exhausted. Yet apparently she could still work, according to the govt. WT*?? She can’t cook a meal. She can hardly stand. She’s skin and bones because she can’t eat. The whole thing was out of control, and no one seemed to care (except her husband and doctors).

She eventually did get disability. I believe she lives pretty housebound. At one time she was unable to travel by plane, which she used to do quite a bit. This was enough years ago that there weren’t as many ADA mandates as far as the airlines and airports. She has to be driven. Cutting her meat wrong can dislocate something.

Thank heaven for the internet as it keeps her mind alive.

Life without Mexican food is no life at all

Teddie · ‎03-10-2010

@cherry wrote:
@Teddie if you suffered like I have, you would only be too glad to stop eating things ,that made it worse

Oh @cherry, I know.... In fact, I’m dealing with some things of my own. It’s not fun having to watch everything we eat. I hope you know I was teasing ya! I put the little winking face so no one would think I was seriously scolding. : )

Noel7 · ‎03-09-2010

wrote:
@cherry wrote:
@Teddie if you suffered like I have, you would only be too glad to stop eating things ,that made it worse
Oh @cherry, I know.... In fact, I’m dealing with some things of my own. It’s not fun having to watch everything we eat. I hope you know I was teasing ya! I put the little winking face so no one would think I was seriously scolding. : )

HI @Teddie

I think you get used to it, not ordering certain things when you eat out, don't eat at night, that kind of thing. I'm used to it by now, although I never did eat at night. Once in awhile something I'm not familiar with bothers me.