tag:blogger.com,1999:blog-8658305222332655387.post5266457880819543124..comments2023-10-10T05:10:03.977-07:00Comments on From Huskies to Husbands: Preliminary Diagnosis - Ehlers-Danlos Syndrome & FIbromyalgiaStephaniehttp://www.blogger.com/profile/15096840533718475842noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-8658305222332655387.post-86195439356745707982012-11-27T15:46:19.862-08:002012-11-27T15:46:19.862-08:00I really don't have much advice to give. Over...I really don't have much advice to give. Over 3 years later and I still don't really have any answers or help from the medical community. I am wait listed with a number of specialists and hoping that once I finally am seen by them I can get some help.Stephaniehttps://www.blogger.com/profile/15096840533718475842noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-33801024251667003242012-10-08T16:31:29.779-07:002012-10-08T16:31:29.779-07:00I have just come back from the dr w/the suggestion...I have just come back from the dr w/the suggestion that I may in fact have this as well. I am 32 and was diagnosed w/fibro a few years ago. It was a tough pill to swallow. I feel like I am just now coming to terms w/it & have yet to feel like it was truly under control. I am sure of one thing at this point & that is that I also will never feel totally well again. I am not sure what my next step actually is and would appreciate any advice you could give. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-38005121669085167962009-05-08T15:19:00.000-07:002009-05-08T15:19:00.000-07:00I'm glad to read that you've got a diagnosis, and ...I'm glad to read that you've got a diagnosis, and can make plans for how to deal with it. It wouldn't surprise me if most of us are not getting enough good, healthy sleep (ridiculous modern schedules). Slowly down and letting yourself get all the sleep you need can only do good. Here's hoping the sleep and the medications have some great effects for you.Phylhttp://bookishgal.shinyideas.canoreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-64864184379381820532009-05-07T18:01:00.000-07:002009-05-07T18:01:00.000-07:00At least you finally have an answer, even if it wa...At least you finally have an answer, even if it wasn't what you wanted to hear. Now you have the opportunity to treat it. I think it is a good idea to introduce medications slowly. If you have a reaction, it will be easier to pinpoint the cause. Good luck and rest up on your vacation.Annehttp://www.smalltownmommy.comnoreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-71003583513478769292009-05-07T08:48:00.000-07:002009-05-07T08:48:00.000-07:00I never even heard of that one! My godmother has ...I never even heard of that one! My godmother has fibro, so I know that is very painful, but the other I never heard of. I can see why you are having a hard time with the diagnosis. <br /><br />I hope you have some improvement...And a good mattress..that makes so much difference in a good night's sleep.<br /><br />Keep us posted!<br /><br />KellyBourbon Girlhttps://www.blogger.com/profile/01379570239516157246noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-45958660239318890572009-05-07T07:38:00.000-07:002009-05-07T07:38:00.000-07:00Sorry to hear about your diagnosis, but at least n...Sorry to hear about your diagnosis, but at least now you know what's going on exactly. Several auto-immune disorders run in my family, and if I were to offer any advice, not that you asked :), but I would really look hard at all of the alternative treaments as well. My family has had huge successes with some of these. Good luck and best wishes!Kellyologyhttps://www.blogger.com/profile/16431369740339820876noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-74280580817044610662009-05-07T07:34:00.000-07:002009-05-07T07:34:00.000-07:00Sorry to hear the tough diagnosis. One positive i...Sorry to hear the tough diagnosis. One positive is that you know more of what is going on with you so that you can work on getting better one day at a time. I hope you are able to get the rest you need so you feel better soon. Take care!BeadedTailhttps://www.blogger.com/profile/14662802836032167316noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-19137840952624989072009-05-06T17:23:00.000-07:002009-05-06T17:23:00.000-07:00Wow, that is a lot to deal with. At least getting...Wow, that is a lot to deal with. At least getting more rest is something you can control and with your husband's help can make happen. I'm sure that over time you and your doctor will figure out the best treatment. I'll keep you in my thoughts and prayers.Stacihttps://www.blogger.com/profile/11150245667082223150noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-6762913133990030112009-05-06T12:08:00.000-07:002009-05-06T12:08:00.000-07:00Answers are the start. How you deal with them are ...Answers are the start. How you deal with them are the continuation.<br />I have been sick since 1997. If you want to "chat" email me kaiminani@gmail.combrokenteepeehttps://www.blogger.com/profile/06907414560986208401noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-24946345533448825932009-05-06T10:00:00.000-07:002009-05-06T10:00:00.000-07:00Like the others, I am glad that you finally have a...Like the others, I am glad that you finally have a diagnosis, as rough as it may be. I'm sorry the news couldn't have been better, but it sounds like you've finally found some health care professionals who actually *care*.Laurahttps://www.blogger.com/profile/02936177233943118063noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-2748567034791828032009-05-06T09:32:00.000-07:002009-05-06T09:32:00.000-07:00I'm glad you're getting some answers. As you said,...I'm glad you're getting some answers. As you said, things won't get better overnight... but you're on your way.Quadmamahttp://gotquads.today.comnoreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-62151600989486428432009-05-06T06:48:00.000-07:002009-05-06T06:48:00.000-07:00I'm glad you have some answers and the doc see...I'm glad you have some answers and the doc seems very reasonable. We just had sleep disorders in school and that is the beginning and end of it all. You need to get to a deep sleep every night so your body can regenarate & release the right hormones. I hope your hubby will understand when he sees that you are more rested in the mornings...Ivanhoehttps://www.blogger.com/profile/14568486975589895670noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-58110113752288009222009-05-06T06:37:00.000-07:002009-05-06T06:37:00.000-07:00I am sorry for the diagnosis, but it is always bet...I am sorry for the diagnosis, but it is always better to know and be aware of what your body is doing,forewarned is forearmed!<br />My daughter has fibromyalgia also, and she is trying to get through the police academy right now. It has been very difficult for her.<br />Best wishes for you, hug the puppies a lot, it helps!the magic sleighhttps://www.blogger.com/profile/09757293678354960424noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-45948613360243260982009-05-06T06:21:00.000-07:002009-05-06T06:21:00.000-07:00I'm sorry for the rough diagnosis. It sounds like ...I'm sorry for the rough diagnosis. It sounds like its going to be pretty tough to deal with...but what a blessing to have answers and to not to have to go through more testing and more months of questions.<br />I was going to ask the same question as Two Greyounds...will this make your eligible for disability? That would help take off some of the financial burden.<br />We'll be keeping you in our prayers. Sleep well.Tamihttps://www.blogger.com/profile/06381915866366125201noreply@blogger.comtag:blogger.com,1999:blog-8658305222332655387.post-22727235933996745122009-05-06T06:00:00.000-07:002009-05-06T06:00:00.000-07:00I'm glad that you finally received some answers. ...I'm glad that you finally received some answers. I'm sure it's not what you wanted to hear, but at least you know what you are dealing with now.<br /><br />I was going to ask you if this is considered a disability and I looked down to see one of your ads say that it is and you may qualify for disability income. <br /><br />I hope you are able to get the rest you need.<br /><br />Hugs!Two Greyhound Townhttps://www.blogger.com/profile/05121726016336858051noreply@blogger.com