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vrimj
Posts: 2 Member
Hi new to knowing about EDS and working hard on reducing the load on my joints
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Hi, was diagnosed with joint hypermobility syndrome and attendant fibromyalgia and secondary raynauds only last month.
Was off and on active with exercise due to longstanding hypothyroidism, but now have to view exercise as medication.
Was given a Fitbit today and have a database of exercises suitable for JHM and fibro, and am slowly building up a plan, the basis of which is 5k 3 times a week.
It's all a bit new to me, but I am fortunate to have a physiotherapist stepson who is a bottomless pool of knowledge
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Hey how are you going. Feel free to add me.0
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Hi there. I was diagnosed Thursday. Thinking about getting a second opinion because I was diagnosis JHS not Ehlers Danlos and I believe I have the Hypermobility type. I'm not ready to give up dancing so I am working on strengthening my trouble areas.0
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I was diagnosed two years ago. Hoping this group gets revived as I've been waiting a long time for people to post here.1
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I was diagnosed two years ago. Hoping this group gets revived as I've been waiting a long time for people to post here.
I hope so too. Initially I was glad to know but now I am battling to not get too down about the permanence of this diagnosis given the pain and no suggestions for living (not just surviving)from the doctor I so.1 -
It was a huge relief at first to know that it wasn't all in my head. Now I have done a lot of research on it and am starting my own treatment. I have over the counter bracing that I wear on really bad days, walking crutches that I use when walking outside my house, and lots of different over the counter topical pain creams. For some reason pain meds and I do not get along very well. Partly, I've found out is from not eating enough. I had starved myself into my kidneys shutting down. Now that I'm learning how to eat, I don't know what to do with all the energy I have because it seems like every time I try to do more a joint will pop out. But I have dropped over 20 pounds in the year since I started eating more.2
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I have EDS and then was hit by a texting driver three years ago that set me into a tailspin. When the wreck happened, I was a dress size 6, but I have since gained almost 100 pounds and I barely recognize myself. My doc says the meds combined with limited mobility have played a role in the gain, but I've attributed a good part of it all to emotional eating. Whilst it feels like the extra "padding" helped stabilize my joints some, I think it was just me trying to justify keeping the weight on. I'm in a better place now, having forgiven the driver and myself, and I am ready to work on getting back to the weight I was before (or close to it anyway), even if the rest of me will never be the same.1
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Welcome to the group Katie_Gee19! As you can see we are not very active here. I am hoping to change this as I know so many of us need the support we can give each other. Sorry I didn't see your post sooner, I've had a very busy couple of weeks with family reunions, Great Nieces and Nephews first birthday parties, and geocaching. The power in our neighboring town went out last night during a thunderstorm and that knocked out our internet.1
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Hi @Katie_Gee19 I too am trying to get back to "me". I struggle to lose if I don't go to extremes. By which I mean the Tracy Anderson method in which you eat often but few calories and workout intensely daily. Or the use of a weight loss doctor who decreased my calories to 1000 a day and gave me diet pills. I would like to lose slowly to keep it off but with the inconsistency of my body allowing me to exercise it seems it is all up to my diet and being in pain or angry about not being able to workout often lead to me making poor food choices. I have been looking for any additional support. I was in a great challenge but it ended and at this point I am wait listed for the next term. Feel free to add me1
