Comments on: Hello. My name is Sarah, and I have Ehlers-Danlos Syndrome. http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html Amazingly informed & therefore properly opinionated. Wed, 22 May 2013 02:20:16 +0000 hourly 1 http://wordpress.org/?v=3.5.1 By: Mary http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-142932 Mary Mon, 20 May 2013 12:14:14 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-142932 Sarah, I see that your post was written 5 years ago. Hopefully, in the mean time, you have found something to help with your constant pain. If not, I have a suggestion. Let me back up to say, I also have EDS. My greatest constant pain derives from the fact that, as my neurologist says, my spine “looks like I jumped out of an airplane for a living.” Herniations, ossifications, calcifications at all levels of my spine. The nerve irritation and impaction at all levels results in nerve inflammation and nerve pain through-out my body. Everywhere those nerves travel. I tell you this as background info to my suggestion. Approximately 5 years ago, I began using two in home traction devices: 1) a full body inversion bed, and 2) an over the door neck traction devise. Both devices separate my spinal discs to temporarily relieve some of the pressure on my spinal nerves. Neither process is pleasant. However, both process provided almost immediate results for me. From the first use, both processes provided a tiny period of reduced pain after treatment. This encouraged me to continue using these traction devises. Over time, I found that the periods of pain relief following traction grew longer. It turns out that the traction actually allowed the inflammation of my spinal nerves to subside. (So, although the herniations, ossifications, etc were still there, the nerves themselves were less inflamed. Therefore, the nerves could travel through these irritants with slightly less impact.) Consequently, the periods of reduced pain following traction grew to be greater and greater. Now, 5 years later, I still use the inversion bed daily. However, with it I am usually able to control my pain to the point where I can be upright most of the day & evening. So, if you have not found your own pain solution, you may want to google “inversion bed” and see if it is something that meets your needs. (There are a variety of types on the market now. I don’t have any particular recommendation, other than make sure it is stable looking. I tried one at a sporting goods store that was really wobbly and scared me.)

]]> By: Danielle http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-141443 Danielle Wed, 15 May 2013 05:02:59 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-141443 Hello Sarah; I am so sorry to hear that you have this. To be perfectly honest I have the way less severe version of this. My rheumatologist never gave it a name; just that my body produces too much collagen and it makes my joints move too far and than I hurt. I started having symptoms in early 2000 and I was only 15 at the time. No one really knew what was wrong with me; first I had x-rays; then I had CT scans then lots of painful blood work and cortisone injections. I have seen many many specialists and was told it could be anything from a rotator cuff issue to cancer. Yes my drs told a 15 year old me I may have cancer, but thankfully it wasn’t that. I’ve been told I have drug seeking behavior because I tried to tough out the pain for a few years and it just got to the point where I couldn’t anymore. So after not seeing anyone for at least 3 years I finally went into a rheumatologist thinking it was just simple arthritis. He ran an obnoxious amount of tests; everything from lupus to HIV….yeah I wasn’t too thrilled abou that one. Luckily all the tests came back negative or normal. And that’s when he told me I have a genetic issue; he sated it wasn’t as bad as ehlers danlos but it’s was along the same lines just much more manageable. I am taking pain meds twice a day (nothing compared to what you have to do) but I’m still getting used to it and if I miss one dose I’m in the most intense pain I’ve felt in years. It seems my body is getting a little dependent on having something to manage the pain. Up until recently I’d only been taking your over the counter ibupropehn; I would take 6 at a time but still; my dr switched me to Celebrex and while I’m not thrilled to be taking medicine everyday I am very glad to finally feel what it’s like to not be in pain every waking moment of the day. I may not know exactly what you’re going through; but I do kind of get it and I also wanted to say that you’re a true inspiration

]]> By: gkerah http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-140792 gkerah Sun, 12 May 2013 20:26:53 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-140792 i’m so sorry i know you said no pity posts but i can’t help it. i hope you get better. this sounds really painful

]]> By: Leese http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-135538 Leese Mon, 29 Apr 2013 17:22:25 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-135538 Thanks so much for writing this. I was diagnosed with EDS3 age 40, after 2 years of agony from a partially dislocated SI joint. This is a really great bit of writing and can only help spread awareness.

]]> By: Sarah http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-128942 Sarah Tue, 09 Apr 2013 23:24:02 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-128942 Thanks Tucker. The more people who speak up, the more educated the world will be.

]]> By: Tucker http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-128564 Tucker Mon, 08 Apr 2013 21:28:38 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-128564 I also have hyper mobile EDS, though a less severe form. I wanted to thank you for educating people about something most don’t know about. It is shocking to see how many doctors just assume the pain is in your head. It’s sad that there is so much research to cure other diseases, but nothing for EDS. However, you never know when someone can discover a cure, so keep your hope up. Thank you for posting this.

]]> By: kayla http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-126709 kayla Thu, 04 Apr 2013 03:32:04 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-126709 Thank you for writing this. I also have EDS and i felt like i was alone most of my life with this disorder. I was 13 when they told me I had EDS. At first i didn’t realize how much this would affect my life but that changed a lot when i got my wheel chair and walker. I had to be home schooled due to the fact I could not sit in the class and focus when in so much pain eventually i gave up on life for a while. It killed me not to be a normal teenager. But one day i realized i wasn’t the disorder, I was a kid. I couldn’t give up and i didn’t I had to keep trying my best. I am 17 now and trying to figure out what i want to do with my life.

Recently i got of all of my medications due to all the side affect. I try and do thing with nutrition and mediation. It seems to help a lot more than the meds ever did I can think clear and focus on what I am doing.

]]> By: Sarah http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-122736 Sarah Wed, 20 Mar 2013 17:24:48 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-122736 I would suggest looking for a local support group. I am part of a Northern California EDS support group on Facebook that is very helpful. Talking your issues out with others is hugely helpful. There will always be good days and bad days. You will feel better sometimes, and worse others. As for drug recommendations, I hesitate to make any. I worked very hard to get off of all drugs because I didn’t like the side effects on my body and my mind. That means that I do hurt every day, but less than I did with the pain medication, amazingly. If you can find a chronic pain specialist who you trust, and pursue alternative treatments at the same time (physical therapy, meditation, diet changes, etc.) I think that will be the most successful combination for you. Good luck to you!

]]> By: adrienne perezz http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-122591 adrienne perezz Wed, 20 Mar 2013 02:52:48 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-122591 Hi,
I am new to this and finally coming to terms with severity of this progression. It’s been two years but in
last year my back has desiccated I have herniated and bulges and tear in multiple ares polyarticular arthritis and hybermobility eds as well as inheriting a bout of depression related to all this happening…which was only supposed to be a tear and bulge disc now I have this. I have declined so much recently that I’m willing to try anything. I honestly have no less than 3 appointments weekly and that to put it lightly I’ve had up to 3 in a day and I know this has no cure but just for once I’d like to hear some good news and to the point where my Dr is urging me to be on permanent disability. I was just looking for someone to talk to. It’s very upsetting to me that I have to lay in bed until my pills kick in so I can become useful. I would love to talk more although like u stated about u have good and bays.my hands cramp up also which renders me virtually useless. I’d like to get some type of advice or perhaps you know where to go to join support groups. I am 28 and am very worried about the whole wheelchair thing and I truly hate relying on drugs to get thru my day. My! husband carries me up the stairs to bed and has been very supportive but do u know if there is any physical therapy references or diet for eds… I willing to try anything! In conclusion I’m sure I have put much more wear and tear on ly body serving in the army for years and currently in the national guard (ca) Im trying to look into get medically discharged asap but like anything in military its hurry up and wait… Any advice or just a few words of encouragement would be greatly appreciated never seen or heard of any one with this syndrome but I’m scared to death as my mom was wheelchair bound by 30 related to multiple sclerosis..any drug suggestions that help u would be awesome… Physical therapy ..any tips would be welcomed and appreciated…thank you

]]> By: Carmen http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html/comment-page-2#comment-121013 Carmen Thu, 14 Mar 2013 18:53:35 +0000 http://librarianinblack.net/librarianinblack/2009/05/hello-my-name-is-sarah-and-i-have-ehlers-danlos-syndrome.html#comment-121013 Hi,

I also have eds, you might want to see dr. Frankamano, she’s great, I think she’s in Baltimore. About pregnancy, my mom was fine and then she had 3 kids, only after the 2nd one was she diagnosed with eds.

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